Detours

I managed to keep my schedule for my October MRI and ten days of radiation to nip the pain producing cancer in my pelvis, making good use on my time between finishing my last chemo and starting the next regime. Two days before the scheduled MRI I noticed a few things I thought my neurosurgeon should know (trouble talking and mini-convulsion on my right side for about 30 seconds) so on the day I got the MRI I stopped by to leave a message and was told I should call him at the hospital on the next evening as he was out of town. He answered right away even though it was Saturday night and explained that the MRI showed some swelling around the Gamma rayed area and that if I had any leftover steroids (I got a three day supply each three weeks to deal with post chemo days but always stopped at two days because post chemo days have been okay.) I should take a big dose and go in to see him first thing Monday morning. He said that I should immediately take an ambulance any time if I had any seizures. The steroids did their job and I didn't need any emergency transportation.

After my 60 seconds of radiation on Monday, I stopped by neurosurgy and got more details and a presciption for more steroids plus an anticonvulsant and we made plans for to me check in to the National Cancer Center the next week for the final two days of radiation and another craniotomy. The kids and I spent the week getting ready for them to feed themselves and go to and their respective schools in time etc. We even got all the Halloween costumes together so the could go have fun at an annual party. I thought I'd been dragging them there all these years, turns out they were having fun and were game to go even if mom didn't drag them. Good friends were there watching out for them and the the three who went (J had school) say they had a good time.

Plans went well and I came home yesterday. I'm stuttering a bit but am improving as the part of my brain that work the motor control for speaking had a little trauma. I know that I don't sound like I usually do, but I can still speak in English or Japanese I consider any apraxia very mild.

I have appointments all week, some for getting ready for the new chemo (Tykerb and Xeloda, need to check liver and heart functions) and others for evaluating another "iffy" area in my brain for possibly another Gamma surgery. The nature of this breast cancer means it tends to keep popping up so I remain vigilant and zap when (and where) necessary.

Today I'm off to elementary school to check out this year's art display.

A Little Radiation Before Tykerb

The "lifetime limit" for one of the chemo drugs in my regimen is six to eight treatments so I'd been expecting to hear about the next step sometime this month as I'd already had six. Last week's CT scan showed tumor progress so there is no reason to stay on for another treatment or two. While I take a break from chemo, I'll be heading downtown every day for radiation to my pelvis to get rid of the pain in the... but I'll still remember to take my meds for a while until my ten days of rads kick in.

In mid November I'll start and oral drug that was recently approved in Japan, lapatinib (Tykerb), and an oral chemo drug capecitabine (Xeloda). The Tykerb works like the Herceptin I had and supposed is more effective when used with Xeloda. I've had Xeloda before without any side effects but also without much tumor shrinkage. I've heard good thing though from ladies who've been on Tykerb with and without Xeloda. I'll continue to get monthly Zoladex IVs for the bones.

A few belated photos

The kids agreed that Niagara Falls was a major highlight of our trip.


Of course anything involving jumping came in at a close second. Fortunately they didn't want to try going over the falls in a barrel.

My cousin entertained with a magic show at our Thanksgiving in August and then made these awesome hats.Showing thanks for all of the good times?

It may be pride, but I enjoyed the character of my hometown with its quaint colonial flair and miles and miles of rolling green hills.

Of course running into family and friends there makes it better than any old town with a view.

Learning to Touch Type

People of my age are likely to have had typing classes in high school but I found that even when had a job with a typewriter (remember those?) I tended to look at the keyboard as I typed. I still find myself pressing backspace and retyping the very letter I mistyped as if I were using those sheets of white-out paper that could be slipped between the paper and the typewriter ribbon to remove or cover up unwanted letters with the hassle of painting on a liquid white-out and impatiently waiting for it to dry or risking a major mess, possibly a hole in the page. I was not a great typist. I've been training lately though, thanks to a combination of the kids and our cat. If anyone leaves the laptop open and unattended for even a minute, Koro sits on the keyboard and removes the keys. I've been able to replace the keys I've found but there are a number of soft (silicone I assume) blue pads with no keys.

Back to School

All the schools are concerned about H1N1 flu and we've been asked to take each child's temperature every morning for a couple of weeks and go see a doctor for every sniffle, sneeze or ache before heading off to school. J came home early with a slight fever and a scratchy throat on Monday and L woke up at 4:00 a.m. on Tuesday with a headache and promptly threw up twice. I took them both to the clinic down the street to be diagnosed with a common cold and a stomach bug respectively. They stayed home although they already felt better because school was almost over by the time we finished at the doctor's office. Everyone went to school today.

J was relieved that it wasn't the swine flu as she has a big event coming up at school this weekend. Many of her classmates are wearing surgical masks at school, hoping to ward off the flu until the school festival is over. I imagine it will look a little strange; thousand of teenagers presenting their projects and trying to show visitors a good time while wearing masks. I hope that it stays cool for the weekend so I can go and listen to J's wind orchestra concert.

M has to start narrowing down her high school choices. I guess we should check out a few more festivals and open houses. She is not very excited by the prospect of entrance exams. Next February and her school is trying to stir the entire 9th grade into a frenzy about matriculation so I expect she'll be in a bad mood for the next six months. She is looking forward to her school trip to Kyoto this month at any rate.

I've been to the hospital a few times since returning from our wonderful trip to Central New York. The neurosurgeon didn't like some swelling around the gamma-knifed tumor and wanted a PET scan to confirm that it was not active cancer. Thankfully, it wasn't, but we have to watch the area to make sure that any necrosis in the area doesn't spread. He wanted to know if I'd been having trouble speaking or with coordination on my right side (no problems that I'd noticed). Of course as soon as he asked, I found myself at a loss for words. I'll see him again on 9/11 (when I go for my next chemo) and we'll decide if I should take steroids to keep any swelling down.

In the meantime, the restaurant a friend and I had reserved for a big luncheon in November called to cancel our reservation as they are going out of business. This was after we'd sent out hundreds of flyers with information on the restaurant and started taking reservations. Auuugh! Fortunately we were able to check out a few more options today and reserve a new place near the same station and the event will take place on schedule. We even managed to keep the same theme, Italian, and about the same price. So, any AFWJer who might be reading this, please know that we are looking forward to seeing you at the Kanto Fall Luncheon and further details will be posted shortly in the e-groups and other group media.

Too Busy To Post

Well, my kids are just having an awesome time traveling all over New York State and seeing rainbows here and there. I managed to connect with a few classmates at the local pub and then more again at another classmate's annual picnic on his farm with an awesome view. (We're returning tomorrow for a hayride behind some beautiful Belgian draft horses). They were most impressed by Niagara Falls and still full of energy after hiking up Whiteface with my brother and his family. The Enchanted Forest in Old Forge with water park fun and carnival rides among the fiberglass fairy tale characters satisfied their hunger for cheesy entertainment and they were quite excited to take the wheel for a while on my cousin's party boat at White Lake. My brother and his wife hosted an August birthday bash for my niece, N and L at my brother's place with some mean margaritas, fajitas and a wonderful spinach salad last night.

Among and around all of these activities N has had two piano lessons from a very pleasant local piano teacher and is practicing some exercises now without being asked or told to do so. She sat down at Mom's piano when we arrived and started playing although she hadn't had any music lessons other than at elementary school and my mom was excited that is actually sounded like music. We'll be looking into lessons in Tokyo and trying to figure out the logistics of piano access if N would like to continue.

A Cycle of Sorts

Monday I'd been looking forward to a visit by a former student Ikue, a very pleasant young woman whom the children adore. I cleaned up the place a little bit (never seems to make much of a difference) and bought some snacks and green tea. The recent lack of my bicycle meant that snacks and tea were about all I could carry in a single shopping trip so I decided I'd order rice and a few other heavy things for delivery on Tuesday and stretch the cup or so left in the storage bin.

Ikue's brother, Ken, who helps out at our language school from time to time, called to let us know that she'd arrive around 3:00 p.m. and that he'd be with her. He was hit by a car last week and has a splint on his leg and tape on his wrist so they came by cab. We were glad to hear that there were no broken bones but it sounds like his bicycle was totalled.

The doorbell rang while I was changing so I had M answer it. I heard her thanking someone and she came to the kitchen with a bag full of freshly picked tomatoes from "some lady with a dog, a chihuahua maybe..." So now I have to ask our building manager who might have a small dog and a plot in the community garden to figure out exactly where the delicious fruit came from.

As I was relaxing just after lunch, my cancer survivor friend from the fourth floor decided to stop by with a six and a half pound sack of rice. She'd been getting behind in consuming all the rice her meal and grocery delivery service had delivered and "needed some help." She stayed for tea and chatted away until the doorbell rang and our anticipated guests arrived and made her way downstairs after asking to to keep her updated on this week's CT scan results.

Ikue and Ken brought ice cream and now own the souls of the two younger children who were home and the little boy from downstairs who'd been hanging out here all day. They also brought a gift box of Asahi beer which S is enjoying this week. Ken produced two birthday gifts, one each for L and N who will have birthdays while we're in the States. L was very happy with his Pokemon cards and N with her puzzles which she insisted on doing right away with help from us all. It was a pleasant afternoon with no bickering on the part of my children, probably because two of them were away.

A few minutes after or afternoon guests left, the little old lady from the third floor shuffled in with her usual greeting "Is your mom home?" I always answer with a hello and a yes I'm home to which she dejectedly replies "Oh, she's not home?" and I have to convince her that I am really here and guide her to a chair. She brought her shopping bag and wanted to know if I could top up her rice supply. She has a large Ziploc bag that holds about five pounds of rice (or so I thought). I transferred the new supply from the fourth floor to the bag and learned that it actually holds about six and a half pounds. She's helping the lady on the fourth floor now. I also had some cans of fish, curry roux, a cabbage, some pork and some Japanese bottled sauce that she likes to refill her refrigerator and pantry. She asks for these things a few times a month and pays me back when her pension is deposited to her bank account every two months.

While I was guiding the lady back to the third floor and carrying her food, the next door lady rang the bell and gave N five tickets for free admission to the Yomiuriland pool a few stations away from here. Of course N couldn't remember her name and described her as the cute old lady with glasses who likes music. I was able to thank her when I saw her in the hall the next morning, taking out the trash.

I love how stuff seems to go around like this. Last week a few frozen fish from Kyushu offered to our building manager (also from Kyushu) turned into a can of beer a few evenings later. Somebody had given it to him and he gave it to me to share with a visiting friend while we were up on the roof watching fireworks.

Round and round it all goes.

Summer Vacation - Almost

J's last day of school was Wednesday but her after school club, the wind orchestra, is so active that they'll be practicing every day all summer so she gets up and heads off to school every morning anyway. The string orchestra, wind orchestra and glee club have pooled their resources to book four large buses and rent an entire hotel (well, a medium sized ski lodge) in the mountains of Nagano for four days next week for an intensive training camp. She'll return the evening of the same day that N departs for her three day trip to the Chiba coast with the sixth grade. This means a little more space on the floor for the non-travellers to sleep in comfort for five nights next week. N is happy that she'll return just in time for the local summer festival at school.

M finished school today and has her package of summer homework which I hope she starts soon so we can leave much of it here when we travel. She wasn't too happy with her report card but she did better than I expected she would from the amount of effort seen (more like not seen) this term. Fortunately none of the grades were below average. We have a student-parent-teacher conference first thing Tuesday morning where we'll talk about her hopes and plans for high school and what she'll need to do to achieve them. She's having trouble imagining past a day or two in the future and thinking about the next three years seems a little daunting. Attempts to open conversation remain unappreciated so far. Aaah teenagers - I'm not sure which is tougher; being one or having one (or two or three).

N and L have the same three day weekend and then a morning of school before they bring home their report cards and stacks of summer homework assignments. The rest of their school stuff is clogging up the entryway where they dumped it before running off to play in the park. Again, I hope they can tackle most of it before heading to the airport. I'd hate to have them do all this work and have it lost in transit on the way back.

Shopping with my fingertips

Until April, my bicycle was the equivalent of the Ford Country Squire my mom used to drive in the 1970s. I ferried kids around on it until they were old enough to ride their own bicycles and I transported tons of groceries home. I even stacked a new set of futons on it and rode home one day to save the $12 delivery fee. I didn't appreciate my vehicle until I found myself suddenly unable to use it in April.

When I started having hallucinations and couldn't ride straight on my may home from shopping in April, I quickly got of the bike and pushed it home through the myriad of telephone poles, sign posts and even buildings which kept jumping out at me from the left. If I hadn't been dealing with cancer in the first place, I might have been terrified; "What is this?!" Instead I just called my oncologist and took care of it right away.

The doctors confirmed that my optic nerve was slightly compressed due to swelling around the tumors they found in my brain and I had medication to decrease the swelling before and after surgery. The most recent MRI I had showed that my brain is clear of cancer (good!)and that the swelling in my brain that was still evident immediately post surgery was gone. This is great, except I still don't feel confident riding my bike.

The neurosurgeon says that it may take some time but I tend to think that I'll end up getting by OK by compensating and looking around more carefully rather than relying on my peripheral vision. In the meantime, I can walk to the store and buy and carry enough food for a meal or two at a time, or I can order groceries from the same store online and have them deliver. A combination of the two has been working well and nobody is going hungry.

Still, I miss jaunts on my Country Squire.

June has come and almost gone

I have been moping around all month, lamenting the heat and humidity and not really doing much at all. I have managed to get plans rolling to visit my parents from late July for three weeks with the younger three children. J has too many things going on at school to get away so she'll be in charge of the cat and S is terrified of flying and being surrounded by friendly strangers so he'll be in charge of himself.

I had to make a few trips to the Japanese passport office to get the documents right before they'd accept our applications for the kids' passports (L's signature was outside of the lines but they wouldn't let me sign and add "by mother" as they determined that he's old enough to sign for himself so I had to fill out a new application, take it home, have him sign it again...) I think I have everything right now, per their instructions, and will turn in the applications tomorrow morning. My British friend was kind enough to drive me there last week and also swing by the immigration office so I could transfer my residence permit into my not so new passport and purchase a multiple use re-entry permit valid for three years. She has offered to give me a ride tomorrow too. I'm very glad as her car is airconditioned and she is entertaining. Much nicer than the train. We were able to meet two North American friends for an inexpensive Indian buffet lunch to boot.

Belated Mothers' Day Photos

Here are some pictures of our Mothers' Day Hike

I haven't been doing much on the computer these days just because the kids were home a lot for some holidays and I've been relaxing a lot. A friend gave me an iPod Touch so I've been lurking and looking though (and calling people on Skype).

On Mothers' Day, some friends and I went for what turned out to be a 5 mile hike through a fairly well groomed trail. The younger two ran ahead and I worried a little about being such a slowpoke but they were smart enough to wait at our destination and not go off with strangers. This was one week after the 5/1 gammaknife surgery I had to blast the smaller of the two brain tumors (at a different hospital than where I had the craniotomy on 4/17) but I'd been told that I could do anything from the day after the surgery and to go ahead and dance, have wine, sing karaoke...if I wanted to by the lovely gammaknife neurosurgeon so I suppose it was OK.

It felt good to be in a forest before the heat and bugs came out but I was worried about having to go a little slowly while the kids went off ahead. They knew enough to wait at the end of the trail anyway and the friends walked ahead and make sure they were OK. I rested the next day but surprised that I had no aches or pains from all the ups and downs of the trail parts (about half of the walk was paved). The friend took lots of pictures I'm hoping she'll send some so I can post some here.

I had a round of appointments yesterday, the first since I checked out of the Ntl. Cancer Center on 4/25 and blood work and heart scans showed I was fine to start Adria/Cyto chemo so, after working out the post chemo prescriptions with my breast/lung Dr. (who seemed a little surprised and pleased I'd gone out to the mountains), I got a baseline lung x-ray and headed off to see my neurosurgeon who said he didn't need and MRI that after all (skipped breakfast for naught!). He brought up the prescription from my breast/lung Dr. on the screen to compare with the anti brain swelling steroids and anti convulsion meds he wants to decrease as one of the chemo tolerance steroids is similar. We shuffled things around a bit and I'm on a lower dose over all post chemo and then half of that until June 5, my next chemo day.

I'm planning to take the children to visit my hometown from 7/27 to 8/19 and have been making itineraries this morning. Hopefully all four can go but my eldest, J, may be too busy with the band she joined in her new high school. She's spent a summer with my parents all on her own, as has M, but the younger two have no memories of an American small town summer on the lake with Grandma and Grandpa so I really want to do this.

Quick Update

There's so much I want to write but with the family home for some holidays, I expect we'll be a little busy doing fun stuff in this fabulous spring weather.

I am home and feeling fine after a whirlwind couple of weeks including a craniotomy to remove what turned out to be six centimeter tumor from the center back right side of my brain at the National Cancer Center and then gamma ray surgery at the Tokyo Women's Medical University just yesterday to kill off the almost three centimeter tumor behind my left temple. This postponed chemotherapy plans a few weeks but I'll start on Adriamycin and Cyclophosphomide on May 15 to blast away at the lung and pelvic bone metastases and am ready with my spring line up of kerchiefs and caps for this summer's no hair look.

The onset of the symptoms of the brain tumors and my gut reaction to get myself to my usual hospital immediately were so sudden that it caused a bit of a panic on the home front but battalions of friends jumped right in to make sure that my family was OK, that I had everything I needed while I was in the hospital and that my family and friends had updates. It was not only a huge relief, but also heartwarming.

So, on to Golden Week - No school for six days and lots of sunny days...picnic time.

Disoriented in the Orient

Last Friday started lurching around like a drunk so rush home to call my oncologist and he urge me to get to the cancer center right away. An adventurous journey to my station on downtown as confusion and nausea escalated got me here in about 90 minutes where I stumbled to the restroom and lost my lunch before checking in being whisked upstairs for an MRI.

Dr. F. met me back up in the room he'd arranged for me and confirmed two brain tumors; 4.0 and 2.5 cms. The big one comes out Friday and then the team will reassess the situation.
Meds are keeping symptoms at bay and my room has a view.

I may not post for a while because this computer is hard to use but I feel lots of love and prayers from family and friends around the world.

Disoriented in the Orient

Last Friday started lurching around like a drunk so rush home to call my oncologist and he urge me to get to the cancer center right away. An adventurous journey to my station on downtown as confusion and nausea escalated got me here in about 90 minutes where I stumbled to the restroom and lost my lunch before checking in being whisked upstairs for an MRI.

Dr. F. met me back up in the room he'd arranged for me and confirmed two brain tumors; 4.0 and 2.5 cms. The big one comes out Friday and then the team will reassess the situation.
Meds are keeping symptoms at bay and my room has a view.

I may not post for a while because this computer is hard to use but I feel lots of love and prayers from family and friends around the world.

More Kool-Aid

I get a three week break from Herceptin starting today. We decided that the Herceptin and Taxotere regime has lost its effectiveness and that a stop-gap chemo until Tykerb becomes legally available here is the next step. A few years ago I had a Kool Aid red colored chemo called Epirubicin. From April 21st, I'll start a similar drug, Adriamycin. This one is orange, and is as toxic to the heart as Epirubicin so there's a "lifetime limit" to worry about. Herceptin also affects heart function adversely, so I'm taking a break to clear the system for a few weeks before blasting away with this old fashioned nauseating, hair reducing chemo once every three weeks for a while. Lucky that I have lots of good anti-nausea medications to make treatment a little smoother.

I skipped the Hercptin today but ahead and got my Zometa, the bone strengthening IV, today so I won't have to go in next week and I can enjoy J's entrance ceremony.

I'd expected a longer day of treatment and left lunchboxes full of chirashi sushi for the kids so I decided to take advantage of the beautiful weather and walk a few stations before heading home on the train. I went from Tsukiji to Jimbocho via Ginza, Yuurakucho, Hibiya (near the imperial palace) and Kanda. In Kanda there are a few large sporting goods stores and one of them had boxes and boxes of various training wear out on the sidewalk on the final day of a blowout sale (or maybe they just fell off the back of some truck...) Brand name tee shirts, cotton tennis slacks and jerseys for 300 yen each, the sign said. "J needs sportswear for high school..." I thought as I rummaged through the boxes and battled my way into the bowels of the store where the cashier asked if I had a "service card." The walk was a spur of the moment idea and the discovery of the sale pure luck so of course I had no service card. Did this mean I couldn't partake in the bargains? I must have looked a little panicky because the nice guy told me that it wasn't a problem and he rang up my purchases for 243 yen each so J's gym wear cost me a total of 729 yen. He gave me a "service card" for 20% off on my next purchase. I still don't know where he plucked 243 yen from though. Oh well, I like nice guys, it was a nice treat to get a bargain on something I needed to buy anyway and walking is good for my heart.

Tomorrow we're off in search of sakura (cherry blossoms) with onigiri rice balls and tea.

Sigh

I met with Dr. F. today before my I.V. and he had bad news. There aren't any trials that I qualify for after all. He said he could try contacting colleagues in the U.S. but he knows that it would be very expensive and not covered by any of my National Health Insurance. He can also look at other hospitals in Japan but from what I've seen, the National Cancer Center seems to be the hub for trials.

The Tykerb approval I'd been expecting in December is likely to happen in June. He says I can try different chemo drugs to tide me over until the Tykerb is released. I feel pretty good for someone biding time until the next drug comes out...

I will go ahead make an appointment with the home hospice clinic to get that ball rolling anyway. Then I guess I'll make a list of all the drugs that women in the online breast cancer support group have had success with and hand it over to Dr. F. when I see him next Tuesday for bone scan results and treatment. I can get some input on whether they're available for breast cancer treatment or when they will be. Now I'm free to enjoy the foreign wives association picnic on the first. J plans to go with me tomorrow to walk around Tsukiji and Ginza while we wait for my skeleton to absorb radioactive injection the bone scan. She can carry any bargains we find at the market home for me.

Thinking about the trial appointment

I'm sure that they have my medical history but I thought I should have a digest on hand when I talk with the doctors about whatever trial they're hoping I'll take part in.

Here it is:
Nov 2004 - partial masectomy (clear margins) - ER/PR++ HER+++
Dec 2004 - Started Tamoxifen
Nov 2005 - Mets to axial, clavicle and neck lymph nodes - Rads for 30 days, then CEF-T Chemo for 7 months
Jun 2006 - Lung mets showed up mid-chemo , shrank a little w/final few treatments - oral toremifene
Oct 2006 - changed hospitals
Dec 2006 - Tamoxifen and monthly Zoladex
Feb 2007- Dramatic growth of mets! Stopped Tamoxifen and Zoladex
Mar 2007 - Began weekly Herceptin
Jun 2007 - Added weekly Taxol to regime
Apr 2008 - Yet more lung mets - stopped Taxol
May 2008 - Started Xeloda - 3 weeks on 1 week off
Aug 2008 - Got a port!
Sep 2008 - Stopped Xeloda, started weekly Navelbine
Dec 2008 - Tumor progression, stopped Navelbine
Jan 2009 - Taxotere begins again, once in every three weekly Herceptin IVs
Mar 2009 - Added Zometa because of painful pelvic bone event, tumors progressing

Thank you MIJers!

Last year at this time I was overwhelmed with the worries of paying for ongoing life extending cancer treatments and then overwhelmed again by the support of MIJ sisters, women in an online group in Japan. Thanks to the pledges and donations I received, I was able to relax and focus on getting my weekly treatments and enjoying time with my children this year.

The National Health Insurance plan has a contingency to assist members when their 30% share of the medical costs is high so I have been able to keep my medical costs down to 44,400 yen a month plus train fare after the monthly refunds. I've been able to continue teaching at my husband's English school as well as a few extra teaching and editing jobs here and there so things don't seem so dire financially this year. Whew! Thank you for helping through that all MIJ.

Treatment-wise, I've worked my way through the various treatments that were available and and the tumors in my lungs are still growing, probably more slowly than with no treatments. I'll be getting a bone scan next week to check on some spots that look cancerous on my hip and pelvis. The treatment for these bone metastases will be radiation every day for two or three weeks when I decide that I need help with the pain. I'm not in pain now though, so I'm in no rush to roast my rump just yet. I will be talking with a team of oncologists on April 1st about possible phase one clinical trials. Phase one is just after the lab research, basically when they need to find out how much humans can tolerate before it either stops working or the side effects become worse than the disease. It's exciting that I may get to try new treatments sooner rather than later. I guess I just have to wait until April to find out exactly what trials though, no matter how impatient I am.

I am glad that I feel well enough to get out and around with the kids and enjoy this lovely spring.

Plan B, or is it C?

Not wanting to waste the weekend I wrestled away from the children's friends and other activities, when we all felt fine after all on Friday night, I decided to use the refund from the canceled ski trip on a day at Disneyland. L was very pleased as he had never been. We took an early train and had a great day in spite of the crowds.

We got back around 10:30 and were surprised to see that S had scraped old paint off the bathroom walls in order to repaint them this weekend. We were too tired to do much but change into pajamas, brush our teeth and go right to bed anyway. S came home after 11 and was surprised to see us. He thought we were off skiing because he hadn't heard when we told him that we'd canceled. He was going to surprise us with home improvements.

Exhausted from our adventures, we slept in until noon today and he had plenty of time to paint without all of us underfoot. Then I set up a "Do Not Cross" line with masking tape across the door so the kids, who listen as well as S does, wouldn't go and touch the new paint after I told everyone "Don't touch!" (Which they all understand as"Touch and see why she says that.") The visual reminder has been effective all day. I took the children to a large public bath a few stations away for the afternoon so now we're as clean as the newly painted bathroom is. Tomorrow is a new week.

Disappointed

I had some very sharp pain last week right where my right leg meets my butt. I'm the sort of fool who doesn't recognize pain and has her first child at home but last week I could barely walk. I decided to have the local orthopedic surgeon take a look at it and get an x-ray last Friday. I gave him my history of cancer and, after he saw the x-rays, he asked a few questions about how recently I'd had a bone scan etc. It looks like I ever so slightly chipped my pelvis when my bike slipped a few weeks ago and the area was a little stressed. Then when I crouched to flip hot rice in the rice cake making event at jr. high school last week, the area was stressed again and BAM! Pain! He didn't like how the x-ray looked and didn't want to say anything specific until my oncologist saw the films. Fortunately, the pain has eased and I can walk again.

The weather forecast was for some snow on Tuesday so the Cancer Center wasn't so busy; nobody wants to risk falling down on slippery streets. My neighbor from downstairs had an appointment so we went together. Three out of four children stayed home from school with a stomach bug so I planned to rush home. I showed my films to Dr. F. and he asked to be excused while he ran over to show them to the osteo guy who was even less busy than our breast and lung specialist. The consensus was that my bones are in no imminent danger of crumbling, but now would be a good time to add bone strengthening Zometa once a month to my IVs and think about two weeks of radiation to the pesky bone mets so they won't be such a pain in the butt, literally. He sent me upstairs to have some more x-rays taken and then on to treatment.

I'll make up my mind on the radiation this week after I decide if the pain is really my bones or if it's from pulling something while doing the rice cake crouch. No rush, as I'm already in treatment for cancer. I'll have a CT scan on the 13th and a bone scan on the 25th at any rate. I think I should go ahead and get the radiation before it gets hot and humid (from mid April to October) making possible side effects (itchy itchy and a little sore) even worse.

So, I had Zometa on Tuesday and the side effects, for the first dose at any rate, were listed as slight fever, flue like aches and nausea. Not unlike the stomach bug already raging at home. Whatever it was, these symptoms hit with a vengeance on Tuesday night and I had to cancel lessons on Wednesday evening as I had no energy. Poor S wasn't feeling too well either but he managed to teach his classes. L and N stayed home today but it looks like the worst of it is over. I had to cancel our ski trip though. Sad.

An Encore

J's artwork was chosen again for the annual public school art exhibit at the Tokyo Metropolitan Museum of Art in Ueno. I'll be sure to take a picture and post it here when we get it back. We took the opportunity to go look at the exhibit and buy a book bag for high school at Ameyoko Street, the land of discount shops.

A friend and I took the train out to Chiba yesterday to attend the Gala Banquet celebrating the 40th anniversary of the Association of Foreign Wives of Japanese. Actually, there was a three day convention and the dinner was on the second night but I just couldn't manage to get out for that long. I really enjoyed meeting many of the ladies I'd been corresponding with in our e-groups in real life. The food and entertainment were fantastic and I had a blast. I'm glad my friend was with me because the train ride home was very long.

Too Busy to Post Much

Thank you for crossing your fingers for J. She had her exam and group interview for her first choice high school on January 27th. Most of the students we saw returning to the nearest station as we were on our way to check the results on the wall outside the school office on February 3rd looked pretty glum so she was very nervous by the time we got there. She was overjoyed to find her number on the list of students who were accepted. Wooo hoooo!

There is an orientation for her on March 24th, so we've decided not to go to the U.S. this spring. I will probably go in July with just the younger two or maybe even on my own. My high school class is planning a reunion. M can't miss any school this coming year if she wants to apply for early decision by interview for the high school she's thinking about and J will be busy all summer with brass band and high school culture festival preparations so a trip for them is out. N will have a school trip to the beach in Chiba at the end of July and S won't be too happy if she or L miss any school so the solo trip is looking better (and more relaxing for me!) My brother and his family may be travelling to Japan this summer so I guess I should try to coordinate a little more. So much to think about...

This puts us back at square one of the bucket list; taking the kids skiing. I found a very cheap bus tour that gives us transportation to and from Tokyo, two full days of lift tickets, a night in a small hotel with an all-you-can eat chicken hotpot dinner and buffet breakfast and free skiwear and ski rental. We leave on Friday night March 6th from Harajuku and spend a night on the bus and the bus home leaves the ski area around 4 p.m. on Sunday so nobody has to miss any school and we can make the most of our weekend in the snow.

My next task is to scour the local second-hand shops for goggles and gloves for L, N and myself. J & M are set as I was given said items last year for their school ski trip.

The next item on my list was to attend one of the national events of a women's club I'm in. Each year the Association of Foreign Wives of Japanese has a convention somewhere in Japan. I've never been in a position to travel without the kids (or with them much for that matter) but this year the convention will be near Tokyo. I still can't really spend a night or two away without a lot of grief but I have managed to sign myself up for the celebration banquet on the second evening and plan to make a nice day of it. It's a chance to meet old friends and new who are coming from all over Japan for a workshops and social fun. I'm loking forward to meeting some of the women from some of my e-groups there. This year is the 40th anniversary of the founding of the club and I've heard that about 160 women will be at the celebration (note to self - search for my black slip to go under the sexy dress I plan to wear). My friend from Maine who lives down the street will go with me. I expect we'll be on one of the last trains home that evening.

Nothing like going hog wild and getting out twice in the same decade.

Busy and Long Day

S accompanied J to the high school she hopes to enter. Today was the first round of interviews and essay writing. There was a sign at the gate forbidding anyone but students with validated interview registration cards from entering so he spent three hours in a nearby coffee shop. I'll go with her on Monday to see the results. Cross your fingers. More than J realizes is riding on the results.

I had to wait until the other three made it out the door before heading downtown for my full course of tests, consultations and I.V.s. L had a headache and I almost decided to stay home but as he wasn't feverish or nauseous, I hid the cord for the Wii remote control and told him to stay in bed until S and J returned in a few hours. I was more than an hour and a half late for my appointment but fortunately the computerized system enabled my doctor to know that I was not in the building and he filled the slot with someone who had arrived early for a later appointment. I had to get my blood drawn and also an x-ray before talking with him. He was as thorough as usual and even typed in that my daughter was having her entrance exam for high school on my electronic record making me chuckle. He also imput my travel plans for March so I'm waiting on J's high school results before purchasing any tickets.

The x-ray showed that there is no dramatic tumor growth since my first round of Taxotere on the 6th of January. I'll have a CT scan in early March instead of this week as the results should be more clear after two or three rounds. With all the delays, many other people got places in the chemo room before me and I had to wait for more than an hour for a bed. I didn't start my I.V. until close to 1:00, when I usually finish and head home. I used the time productively shopping for tuna, eating a few plates of conveyor belt sushi, picking up my presciption for two days of anti-nausea pills and paying my hospital bill. Then I had a three hour nap while my superzap stuff was pumped in through my port one drip at a time. I got home around 5:00.

Run Run Run

Wish M good luck in this weekend at the annual Ekiden (a relay race type marathon). She's been on and off and on again this week at school with a cold and then a stomach bug but she seems well enough to run her 4 kilometers on Sunday.

Then J has a test and a group interview for a one in five chance at a place in her first choice high school. If she gets in we won't have to jump through all the hoops of taking tests for her second choice (the safety net) and then later for this first choice place place. First (and hopefully only) phase results will be posted on February 2nd.

I have the next round of Taxotere on Tuesday and a CT scan on Friday (I'll see the results on February 3rd) and will hopefully be able to make some spring break plans.

Here's hoping the week goes well for all.

Looking Good

M got a "makeover" at a new hair salon as her Christmas present and was quite pleased with how manageable her locks are and how luxurious the service was on her day of pampering. The staff was pleasant and hopeful that I'd also sign up for a haircut (as I looked like I needed one rather desperately). I decided against personal pampering of the hair type as I'm probably going to be bald by January 20th and wouldn't want to deprive the kids of any barbershop fun later. She got the full treatment, cut, treatment, straightening, massage, a beverage...and was given a voucher so that friends she introduces get a 50% discount on their first visit.

A few days later, she decided to brighten her hair for the winter holidays with what she thought was a temporary coloring. She, of course, didn't consult me or anyone else in the house, or even read past "sprinkle on, wait, rinse" on the outside of the box, which she immediately discarded under several layers of potato peels and other trash, where it wouldn't be discovered. Then she wore a hat for three days, thinking we wouldn't be suspicious because sleeping in a hat keeps the heat in and it's been so cold lately. I finally told her that I knew that she'd done something to her hair and that I wouldn't be angry but would she please show me.

Helig ko! (Swedish for Holy Cow according to an online translator) All she needs are blue contact lenses! She insisted that it would wash out in a week or two but agreed to let me dye her hair back to caramel brown if it didn't before school started on Thursday. She went off on Thursday, confident that nobody would notice...J came home saying that the teachers had discussed the "situation" and that her teacher had asked her to tell M that the artificial color was not appropriate for school. M said her teachers asked her about it and that she explained that she'd thought it would be temporary (yeah, until it grows out in a year or two). We had a home spa night and she's back to brunette (still artificial, but it won't look so strange as it grows out).

J needed to do something to sharpen her image for the upcoming high school entrance test and interview so we took the 50% off voucher and headed off for another afternoon at the hair salon (minus the straightening and treatment). She has fairly short hair so she was worried about having enough for the stylist to work with but she ended up with quite a nice cut. She was impressed by the attention she got and enjoyed the massage too. With the discount, is was 1,950 yen for the whole experience. L and N had 1,000 yen / 10 minute haircuts last week at another nearby place so all in all, the kids look quite presentable, for a change. J said that the stylist mentioned that I could use the discount voucher that she gave her to enjoy a haircut too (as three weeks had passed since the previous attempt to entice me to cut my hair and it was even bigger now) and J explained that I'd be bald soon. Maybe next fall...

I had Taxotere after my regular Herceptin drip and A pre-chemo steroid drip last Tuesday and came home with a three day prescription for Decadron (the steroid) to keep me from having adverse reactions to the Taxotere. Of course the steroid makes me feel yucky in its own way, but I think that the week went fairly well. I hosted J's brass band for lunch on Wednesday and helped out at a school event on Thursday, watching over the 9th graders as they made campfires and cooked pots of vegetable and pork miso stew. Now I have to clean the closet out to look for my stash of hats as I'll probably need them in a week or so.

Sqeezably Good Looking

I had a lot of luck yesterday, bad and good. The bad luck was that I ended up on the super crowded train to treatment because I took too long to make the obentos (lunch boxes) for the kids. It was so packed that I couldn't move my hands anywhere and some guy took the opportunity to give my derriere a squeeze. I tried to glance around and the men around me were all younger than I was so I wondered if perhaps one of them either liked big butts or had made a serious mistake (the poor fool). Or maybe any old butt would have sufficed.

It was just a quick grab/squeeze/release but it was a bit of a surprise. I ended up laughing it off (Merry Christmas whoever you were!) and deciding that it must be my lucky day (not necessarily good luck, but luck of sorts) so, just after treatment, I ventured into the big official Tsukiji market right outside the off limits auction area to look for some ankimo (anko monkfish fish "liver") for a friend. I was treated to all sorts of bantering and bargains.

Quite a few foreign tourists wander through the market with narrow cobblestone aisle after aisle of "middle vendors," rectangular vending areas separated by plywood and Plexiglas filled with fish of all sizes and kinds on boards held up by crates. Each vendor has a license to attend the early morning auction to bid on fish for their shop and cart their bounty to their nook of a shop. Most of the foreign visitors apparently don't look for anko fish liver or ask about prices so I think that they were a little surprised by my approach.

One old geezer added double the amount of ankimo and discounted some crab meat because, he said, I'm so beautiful. I got guffaw out of him when I told him that I hear that all the time and tossed my head. Instead of paying 2400 for all of the stuff, he only charged me 1200. Then a shy younger man at another shop handed me back too much change and smiled and waved when I looked surprised and asked if it was OK. He was probably happy to get rid of his tuna jaw even for only 200 yen (it was too big to fit in my biggest pot but has been dealt with).

I was on a roll; I got some good pink tuna for the kids' Christmas tuna on rice sushi bowl dinner (I had to teach last night so we're doing turkey tonight) and the young man marked the chunk of very fresh tuna down from 2500 to 2000 yen. I added 500 yen worth of the nakaochi at another store and was given an extra handful from the guy scraping it off of the tuna spine while I paid the warmly dressed little old lady with an outdated geisha style hairdo and wire rim reading glasses behind the ledgers in a booth with a heater at the back of the shop. There are hundreds of these little booths occupied by abacus wielding grannies while their sons and grandsons (and a few daughters and granddaughters) cart, cut and sell fish "out front."

At the next shop, I joked about giving my husband cheap herring roe for New Years' at another store as the beautiful big yellow whole "pods" can be expensive and he always expects me to cut them into dainty pieces anyway. There was a 300 yen bag of "pod" scraps and I smiled and told them that I'd go treat myself to lunch on the difference. This time the "financial officer" with a big black bun of hair on the top of her head laughed and told the guy out front to give it to me for 200 yen. My bag was getting a little heavy by now and I hadn't even stopped at the outer market to buy a small turkey and pick up some more sliced almonds for Florentines yet.

I walked out of the market area through the fresh produce section and was given a Christmas discount on the last box (about four pints) of sweet smelling, firm looking, fresh strawberries when I mentioned how happy my four children would be to have such fine fruit for Christmas breakfast. Then I headed over to dried goods wholesale store for my almonds before hitting the poultry shop to get one of their last three turkeys.

For people in Japan, an eight pound bird seems humongous. It was the biggest bird that would actually fit in my tiny oven and I have to turn it over a few times so it heats evenly through and then cover it with foil so the outside doesn't get burned to a crisp. My arms are still sore from the over ambitious shopping but I had a lot of fun getting my bargains and the kids are happy to have good and fresh food.

Time to go make some gravy and get this show on the road.

A Pilgrimage (of sorts) and my Birthday Week Celebration

J and M had final exams from November 25th to the 27th and were complaining about the noise level during the three day weekend just before then. Chatting on Skype with an American friend in Tochigi, we decided that a visit there might be in order. I had a Saturday evening get-together with the ladies from the elementary school newspaper committee so we decided on an overnight visit from Sunday. We also made tentative plans to go see Nikko as my friend hadn't been yet and neither had my children.

The kids were quite excited about getting to go somewhere and were up before dawn on Sunday morning, giving us lots of time to get to Tochigi, buy tickets there for our trip home the next day on a special express that goes through a few times a day all the way to Shinjuku and leave our overnight things at my friend's place before returning to the station to head on up to Nikko. My friend treated us to the fancy express train to Imaichi, the station just before Nikko, as I wanted to make a pilgrimage to Masashi Gyoza.

Twenty six years ago, on my birthday, my high school classmates treated me to gyoza at a small shop near the high school in Imaichi. A young couple ran the tiny shop serving gyoza and only gyoza; either crispy fried ones or slippery boiled ones in a bowl of hot water. Soy sauce, vinegar and hot sesame oil were on the counter for customers to make their own dipping sauce or flavor their hot water accordingly. The prices were cheap and the gyoza were really good so I wasn't surprised to hear that they'd moved to a large location a few years later.

The station master looked a little worried as I approached to ask for directions to the store. He probably thought that the group of foreigners had gotten off one stop early by mistake and were wondering where the World Heritage sites could possibly be. When I asked in Japanese about the dumpling shop he was so relieved he lapsed into the local dialect and even pulled out a map to mark with a pen so we wouldn't get lost.

We found the shop with no trouble and had to wait for some seats as the place is still quite popular. The price had increased over the past 26 years, but was still very cheap at 210 yen for a plate or bowl of six pot stickers or dumplings. The couple behind the counter looked familiar but I was a little shy about asking if they were the same people or not so I ordered a double dose of yaki gyoza (the crispy yet juicy ones) for each of us. While my friend and I chatted, L gobbled his gyoza with great gusto, finishing even before his infamously fast eating older sister did. He said that they were really good and I refrained from divulging that they were full of vegetables like cabbage, nira (sort of like chives) and garlic. He thinks he's allergic to vegetables.

After we finished, the proprietress came and we spoke a bit. My kids were very surprised when they asked if I was Kathy and broke into smiles remembering how I'd visited their shop years and years before. N wondered how these people in a place far from home who spoke a different sort of Japanese would know who her mom was. As we were leaving, the lady came out with a bag full of cans of juice for us to take on to Nikko and enjoy.

Nikko itself was very crowded on the second day of a three day weekend so we decided it would be best to walk a mile or so up the hill to the World Heritage area with big 300 year old cedar trees, a pagoda, a Buddhist temple and Shinto shrines. The line for an inside view of the Toshogu Shrine compound was long so we detoured and viewed Futaarasan Shrine behind it and enjoyed walking along the avenue of cedar trees. We caught a bus back down the hill and went in search of Kanaya Hotel Cheesecake at the Kanaya Hotel Bakery Shop near the station. They had sold out much earlier in the day so we wandered in search of a coffee shop for a little refreshment before catching the local train back to Tochigi with hordes of other people who also couldn't get reservations on the fancy express train. I was glad that we hadn't planned on a day trip as it would have been awful to stay on that crowded train all the way to Asakusa.

The kids were delighted to be treated to sushi at a family style conveyor belt sushi place near my friend's house and I had a great time catching up with my friend and relaxing at her apartment later. We watched an episode of Grey's Anatomy , a show I'd never seen as I don't have cable TV, time to watch TV or even first dibs on the remote control. Of course now I want to see the rest of the series. (Chuckle)

On Monday morning we took a walking tour of Tochigi, a city that I'm sorry I never explored before. The town has made big efforts to preserve and present their history well and the canals and Edo period (and even a few Meiji period "modern" buildings) were intriguing. The lady running the sweets shop along the canal was pleasant and even presented each child with an extra snack when we stopped to buy some sembei rice crackers as a souveneir for J and M.

Our express train had us home just as J was frying some rice for a late lunch and in plenty of time to get ready for my afternoon English lessons. I was glad that I'd been able to have such a pleasant mini-vacation, J and M appreciated the quiet pre-test weekend and L and N agreed that the gyoza were the best they've ever had.

Tuesday was treatment day - "Happy Birthday! Fill'er up!"

I met friends on Thursday (while the kids were in school) for a Thanksgiving buffet at the New Sanno Hotel and it was a rather spectacular spread. I wasn't hungry all day Friday. I did meet some foreign wife friends for coffee in the morning before heading off to school for parent teacher conferences for N and L.

I finally had a bit of an appetite on Saturday morning, just in time to take
the kids, a pot of mashed potatoes and a pot of mashed kabocha (Japanese pumpkin) on the train across the river to another American friend's house for a family Thanksgiving. I think this is the first time I've managed to have all the kids with me at one of these events in about five years. I made sure to feed N a lot before we went so she wouldn't devour everyone's share. The weather was nice enough that the kids could play outside so my friend's house wasn't too crowded. She made a pecan pie and roasted the turkey, other people brought other dishes and some really great wines. It was a feast for all. All but L that is; he whispered sadly in my ear that there was nothing for him to eat. I reminded him that he'd been begging for mashed potatoes for breakfast but he said that he liked them freshly mashed. Poor boy...It's a good thing I had a few onigiri rice balls for just this sort of situation. Problem solved.

We spoke of things to be thankful for, and I was thankful to be here and have good friends to share these good times. The kids said they enjoyed the day and they waited while I got a thousand yen/ten minute haircut at the shop near the station before we got the train home.

That evening I planned to meet a foreign wife friend who was bringing another foreign wife guest from out of town over for a pint of Guiness at the Irish pub down the street. A few other foreign wives said they'd come along and we ended up being a group of nine from a few places around Tokyo. Unfortunately, the pub had been rented out to the local Berlitz Language School for their year-end party and we had to find a different place. When they asked me "Are you from Berlitz?" at the door, I should have said yes!

We meandered through the shopping district but all the bars were full so we ended up at an inexpensive Italian restaurant (one of a chain) for our wine and beer powered gabfest. I felt a little bad about not being more organized about reserving someplace, but I'd only expected 3 or 4 of us, maybe 5, so the big turnout was pleasant surprise.

I relaxed on Sunday and Monday and met friends for buckwheat crepes for lunch in Shinjuku on my way home from treatment on Tuesday, cycled to a friend's house for delicious chili for lunch on Wednesday, went to N's big concert with the entire fifth grade at the local auditorium and pasta afterwards with two of the other moms before the newspaper committee meeting at N & L's school, met a friend after shopping on Friday before J's and M's parent-student-teacher conferences and relaxed at home today until a friend stopped by with some winter coats that her boss thinks would fit me and some fun Christmas treats and lights.

My week of celebrating turned into two weeks and now I have to bake some Florentines for the annual Christmas cookie exchange on Monday. Travel, friends, parties, more friends; what a blast!

Good News

After I had my CT scan last Tuesday, I'd put it out of my mind as I didn't want to worry myself sick waiting for the results. I did such a good job that I forgot completely until I walked in to see my doctor yesterday morning and he was clicking around on his computer to bring the images up for our discussion. The CT scan results (which are much more accurate than an x-ray) showed that, while not dramatically, the Navelbine was helping to shrink the tumors. The three biggest tumors shrunk a few millimeters each. This means that I can keep my new silvery grey wig in its box for a while as the Taxotere should be saved for when I need more dramatic results. I forgot to ask my Dr. exactly how much more Taxotere I can have before it is either ineffective or is more trouble than the cancer it fights. That can wait until next time. I ended up going back on Navelbine after the three week break from chemo so I was a little tired today, but more energetic than past post-Navelbine days because of the break and, probably, the good news.

The Dr. did encourage me to continue with the hospice preparations as the hospice certified place will need him to send them my records and a request to have them see me before I actually go see them. There aren't many hospice certified hospitals in Japan but I found one on the list which is not too far away and which has a good network of qualified professionals who can do home visits to assist with the home-hospice option instead of or during the apparently long wait for a bed in the hospice ward itself. My downstairs neighbor's former student used to work at the big general hospital where the hospice ward is so she called the woman and got the low down on whom we should ask for and what to expect. We'll probably go on a tour or my first consultation together in January.

Future Plans

M and I had a productive day on Sunday, going to a high school guidance fair to see a huge variety of public schools so she could start thinking about what she wants to do and where she should go to high school to get the most out of those years. It's a lot like choosing a college. She is so different from J so the same schools J was looking at were not inspiring to her, but now she seems excited at the prospect of high school and beyond. We've signed up to visit a few of these schools later this year.

My neighbor and I went in to the cancer center this morning and I was glad to hear that my heart scans from Friday were fine and that I could get my usual dose of Herceptin today. Dr. F. asked how I'd fared with my counselor last week and if I would like to use that counselor as my regular contact at the social services counter. He encouraged me to continue researching and gradually making plans and to make my preferences regarding various aspects of medical and other care known to the counselor so she can help make things happen should the need arise. Planning is not really a problem as I figure I can amend plans as conditions change; who knows what my preferences will be when I'm ninety?

I had a CT scan right after my visit with Dr. F. and then had my treatment. My downstairs neighbor had her consultation with Dr. F. and met me in the chemo room to sit and talk before we headed off to the fish market to try a new sushi shop and then walk off lunch in the market. Next week I start Taxotere again, when I see the CT scan results.

The rest of this week is filled with teaching, a lunch with some Japanese friends and the biannual elementary drama festival which is always something the kids are so proud to do with their entire grade. L and his friend from downstairs are giving me a preview, acting all the the other kids' parts to practice as I type. L and N have Monday off as a consequence of their Saturday performances. The immediate plans for the future are to bake cookies on Monday.

Almost Time for the Kotatsu

What's a kotatsu? It's what the kids are begging me to set up and the reason we have to move our furniture around and put the dining room table into storage. A low table equipped with a heater and some blankets is all they need for a snuggly, comfy winter. Well, they also say they need lots of mikans (Japanese tangerines) to peel and nibble while they become the Japanese equivalent of couch potatoes until spring. It's incentive enough to get them to help with the cleaning anyway.

I had a different technician than usual for today's heart scan and she wouldn't share any comments other than that I'll be able to discuss the results next Tuesday when I see Dr. F again before my CT scan. I was assigned a social worker at the support counter and we spoke for about half an hour about my concerns and specific needs. Not much of the information was new, but I did get some good literature that will make explanations to S a little smoother.

I spoke with my 77 year old medical mentor downstairs this evening. She has connections with medical facilities all over Tokyo and a good grasp of what it good and what to avoid. It turns out that she has started gathering the same kind of information and that I may be able to help her a bit. We'll both go to the counselor on Tuesday as we're looking for a home hospice oriented clinic near our apartment house and not just the usual simple home nurse type service which she has already been using for the past decade for simple check-ups from time to time.

A friend and supporter has reminded me of some simple meal services that might be useful in getting the kids to learn and enjoy a little cooking. Ingredients for meals are delivered already measured out or chopped with instructions on how to finish cooking the meal. It's cheaper than ordering completely prepared meals and the meal plans are well balanced. It should be fun to try these once in a while and let the kids cook meals with minimum fuss. I'd heard of these services before but was very grateful for the reminder.

The Talk and a really strange toilet experience...

I was expecting this talk sooner or later and today was the day. I nursed a cold all weekend and although I feel better now, I still have laryngitis. I went in for my usual pretreatment blood draw plus an x-ray to see how the Navelbine is working and the Navelbine is now applying for unemployment. The spots in my lungs have grown in spite of the continued Herceptin and Navelbine and my heart seemed a little enlarged in today's x-ray so I had no treatment today (which was the bonus, a day off!).

While giving me a very thorough exam and checking to see how much oxygen was circulating with one of those finger sensors (plenty, he was glad to report) he gently approached the subject of palliative care and end-of-life preparations. He wanted to know if I'd made any special considerations and stressed that he wants me to have quality time while I'm around and that as I'm not showing any symptoms of the lung tumors (like palpitations or getting out of breath easily) that now might be a good time to work on my Bucket List.

He asked about the home situation and listened while I explained about how much support at home I could expect from past experiences (um, not much) and then insisted on walking me down to the counseling and welfare coordination office to introduce me, hand them my file and explain a little about the complications that he hopes they can work out for me. Then he asked them to get as much info together for me about palliative care and hospices, in hospitals or at home with home nursing etc. and financial aid for a discussion on Friday, when I also have an appointment for another heart scan (looks like it's sayonara to Herceptin for a while).

Next Tuesday I'll have a CT scan to get a better look at the situation. It was very sweet of him to do that for me instead of just telling me to stop by there on my way out. Probably as an apology that Tykerb is still in the pipeline and won't be approved in Japan until spring at least (I'd been hearing "this winter" until today.

I had a British friend with me today and she was a little worried when she saw my oncologist escort me to the counseling place, but gave me real big hug when I explained what had gone down. Then we went out and laughed in death's face by indulging in steak for lunch and an evil dessert (which we split and still couldn't finish) with some restaurant vouchers I'd won from a magazine before heading home. Now it's back to broccoli, squash, carrots and brown rice for me. The restaurant had fully automated toilets; I walked into the stall, closed the door behind me and the toilet lid whirred and raised itself, making me jump a bit before bursting into laughter (me laughing, not the toilet).

Home for a nap (no treatment, too much lunch!) and then online to check for local resources again and update my files so I can have a list of questions for my Friday session. PLEASE FEEL FREE TO TOSS IN SOME SUGGESTIONS HERE ABOUT WHAT I SHOULD BE ASKING REGARDING HOME CARE ETC.I'm sure some of the stuff will be a little culturally different than for Hospice in the U.S. and it'll be interesting to see what the deal is here. One of my seasonal survivors' lunch friends can help with info as she has National Hospice Association connections.

Anyway, I have some goals bumping around in my brain:

1. Accept that I'm not just letting go and living in anger or despair,but choosing to enjoy as much quality time as possible and live positively until the end.

2. Get over this grief!

3. Get as much info on hospice and palliative care in Japan as possible from NCI, the Internet, friends etc.(I already found a Home Nursing Station that offers end of life care that's in our neighborhood to deal with medical things and will ask around and see how the people in our building have felt about them in past cases)

4. Prepare husband and kids - This is a bit of a monumental task, but a few baby steps at a time are fine.

5. Make a Bucket List(GO SKIING WITH THE KIDS THIS WINTER!)

Looks like I'll go back on Taxotere for a few more rounds from Nov. 18 or 25 as it was effective in the past, and then when the limit is reached, take a break from treatments and let my body recuperate while I have as much fun as I can with my kids and watch and wait.

And here I was thinking I should go get a trim. Maybe I'll get curls again the next time I get hair. Shall we take bets?

It's been a while

I've been having trouble organizing everyone's schedules these days and we haven't done much as a family lately. I decided to let the children decide about whether or not to go to this year's neighborhood sports day and kept quiet about it beforehand. If they really want to go, I thought, they'll talk about getting ready and make plans. On the day of the event, I was up early, but the kids all slept in until well after the event started. So, this year I didn't need to make a fancy three tiered lunchbox. Nobody complained. Halloween sort of went the same way this year, as the kids who might have enjoyed it most were too busy with their friends to notice or ask about doing anything special. They did play with some costumes with their friends and have a little candy and mandarin oranges, but we didn't have any parties, do any decorating or do any trick-or-treating. I did serve pumpkin soup for dinner at least, although I'm not sure if anybody really got it. I feel like such a Grinch some days.

Recently, I substituted for another American at an English conversation class with some very lovely ladies who've been studying regularly together for the past 25 years. They all love to laugh and the lessons have been great fun. The regular teacher has contacted me about taking over permanently as he will be too busy for the semi-monthly sessions. The ladies are sharp and full of fun and information, so I'm looking forward to these classes.

Plans for this month include a Thanksgiving buffet at the New Sanno Hotel, a U.S. military run facility downtown. A neighbor here knows the head chef and can get is reservations. It will be right after my Thursday morning classes with the aforementioned lovely ladies so I'll be a bit rushed to get from point A to point B in time but I expect it will be worth it. The kids have school that day but the will accompany me a few days later to a belated Thanksgiving potluck at an American friend's place. Double turkey and trimmings! Whoo hooo!

This weekend I've been dealing with a bout of the common cold which seems worse than ever probably because I never used to catch colds (or if I did, they didn't slow me down). Plans are to sleep in all day tomorrow and be better by Tuesday morning for another blast at the immune system. I'll get an x-ray to monitor (hopefully) progress of the treatment. Knock on wood.

Exercise

I'm getting lots of it running around taking N to school when she has too much to carry or if it rains. Last week we had a call from school; N had hurt her foot and perhaps it should be looked at. S cycled over to school and gave her a ride home. He said he thought it was a sprain and we iced it and made her rest with it raised a bit. I took her down the street for and x-ray and we learned that she'd broken her fifth metatarsal bone in her left foot. She has a removable cast so she can shower and has to use crutches to keep weight off of it for a while. It makes carrying a lot of stuff to and from school a bit troublesome. Fortunately, some friends are glad to help her out on the way home so I don't have to pick her up. I hope that she's learned a lesson about jumping down the stairs from the fifth step instead of walking to the bottom.

I had my second Navelbine "push" on Tuesday. It knocked me out as much as it did the first time. I guess Tuesdays will be my down days for a while. A little meal planning on Monday should let me sleep all afternoon, evening and night Tuesdays. I think I'll take a break on the 28th of this month when J and M have their music festival at school; I'd hate to rush back to catch the second half of it and sleep in my seat there.

New Regime Again

Last spring I was offered Xeloda or Navelbine, either with a 30% chance of doing much. I tried the oral Xeloda over the summer and had a "vein access system" embedded to make my IVs a little easier and be ready for the Navelbine or whatever comes next after the Xeloda stops working. Treatments have been very easy with the port.

Last week I had an X-ray before talking with my oncologist and we decided to give up on the Xeloda and start Navelbine next Tuesday. The largest of the tumors in my lungs had grown from 2 to 3 centimeters over the summer. I'm not having any breathing troubles and could live for a long time with tumors hanging out in my lungs as long as they do not progress, so a change of strategy is needed. Time to stop these pests with a little more IV chemo. to tide me over until Tykerb, the next miracle drug for HER2 positive cancer patients, is approved by the Japanese government for use over here sometime this winter.

The Navelbine is derived from periwinkle plants and, like other plant alkaloid chemo drugs, is a little caustic. The weekly IV will be a short "push" instead of a long drip. No pre-chemo steroids or anti nausea meds are needed so it shouldn't make my Tuesday treatments too much longer, especially with the easy access port which will also keep the Navelbine from burning away at the veins at the access point.

In the meantime, it's school festival season and we plan to visit a few high schools so J and M can get a better idea of where they'd like to aim for when they take their respective high school entrance exams. J has pretty much decided already, but is interested in visiting a few more schools to validate her thoughts on it all.

N and L can tag along as there are lots of things for kids to enjoy at these festivals. I'll be glad for the comfort of my SAS shoes with all the standing on trains and buses and the hiking around, even if we need to change into slippers (which we have to bring with us) at most of the schools.

Tiptoe the Chinese Hamster Posts on Her Trip

We made it to Japan! Kathy’s brother J escorted us after we spent a few days
with his family in Ithaca, NY. Check out our travel magazine.


We were surprised that Tokyo is so far from Narita Airport. The sign at the bus stop said that it would take 140 minutes to our hotel which was actually on the other side of Tokyo and then some but there was a huge thunderstorm and it took us three hours! Kathy and her two younger children were a little afraid when lightening struck the building where they were waiting and the power went out for twenty minutes.

We were all glad to check in to J’s hotel and rest up before our big day of sightseeing on Friday and trip to a hot spring on Saturday after Kathy’s older two daughters joined us. The cold beer looked very refreshing after a long day of Buddhas and beaches but we three decided to refrain in order to get over the jet lag.

Fireworks from the roof of Kathy's apartment were fun in spite of the drizzle and the low visibility due to all the smoke.



Kathy took us to the National Cancer Center in Tokyo today. (26Aug2008) It looked huge from below and the big Tsukiji fish market next door ... seemed tiny from the 19th floor.

Look at this sheet of origami cranes that some patient made out of a single piece of paper. They must have had a long drip! The Chicken was able to speak with them and learn that cranes are a symbol of longevity.

　
　　
The nurse smiled at us and was very interested in my album. She checked Tex’s compression sleeve and was pleased that there was no swelling. She took this picture of Kathy and us.

A Herceptin sister who has treatments on the same days brought Kathy some rice balls made with genmai and grilled salmon wrapped in nori (Kathy says it’s paper-like sheets of seaweed and I thought it tasted pretty good when she gave me a few grains of genmai without the salmon). The nice lady patted us all on the head and sent her best wishes to the Her2 Support members. She has a wonderful laugh.

After treatment, Kathy took us on a quick tour of the neighboring fish market. Some of the people there thought I was a rat and didn’t look too happy, so there aren’t many photos. I can’t imagine why anyone would eat things with tentacles when pine nuts and other seeds are sooooo good. Kathy’s kids love chomping on boiled octopus.

Tex, the Chicken and I have enjoyed our time with Kathy and her family but we are looking forward to returning to Pink's place soon and recuperating from the international travel.

Life Goes On

I was surprised at how much manual labor is involved in implanting a port. The surgeon had to tug fairly hard to make a space for the resevoir portion of the device and then carefully push the catheter part into the vein. I saw why it took longer than expect when I saw the x-ray confirming placement; those catheters are quite long. I didn't feel a thing thanks to the local anesthesia, but I wasn't surprised that I had a sore should the next day. I was told to keep the bandage on until Tuesday, when I go for treatment, and that showering and bathing were not a problem. The bandage kept moisture out and would have worked fine if I'd stayed home and relaxed in the airconditioned living room all week.

Did I relax at home? Of course not! I got back from my overnight stay in the NCC spa around lunchtime on Wednesday and took the kids out to karaoke for two hours before meeting S at a cheap Chinese restaraunt for lunch. The private airconditioned karaoke room and the cool Chinese restaraunt were fine and I was glad to have no dishes to wash. The area under the bandage stung a little but was fine after a shower and a good night's worth of sleep.

J and I left M in charge of the younger two with food for breakfast and lunch and went to an open house at one of the better public senior high schools on Friday. She'll be taking tests to be accepted to a high school so we're checking out as many possibilities as we can to decide where she wants to try for. This school look really great; a good blend of academics and other character building challenging yet fun events. This will be the first time in her life when she can be surrounded by similarly talented students with like interests. She manages well now in spite of the riff-raff, but I expect that this is due to the training she's had at home in concentrating among the chaos created by her siblings.

We finished our tour around noon and I mentioned to J that Mrs. Y lived on the other side of one of the nearby stations. We decided to call and see if we could meet for an impromptu cup of tea. Mrs. Y said that she had plans downtown but could meet us so we walked on to her station and she caught a bus. We coordinated by e-mail messaging on our cell phones and she suggested we wait in the cool bookstore near the station. We browsed for a while and were very pleasantly surprised when she showed up with her daughter M. M and her husband have been in Colorado with his job for the past few years and I haven't seen her in a very long time.

They changed their plans and the four of us enjoyed a delicious lunch in a new Italian restaraunt near their station. J had a wonderful time at our leisurely ladies' lunch and we head home in a good mood, arriving around 4 p.m., a little later than our estimated "lunch-time" frame we had given M but apparently the younger two had slept until about lunchtime anyway and there had been no problems.

All that walking and talking in the heat did a number on the bandage and it peeled off on its own from the sweat to reveal four neat but still yucky black stitches and a fairly neat and well healing incision. I washed and applied iodine and let it air dry for a while before covering it with a non-stick bandage from our first-aid box. I expect the tugging sensation to go away after the stitches come out.

RePORT

I got a bed in a quad with a spectacular view and no room mates.The TV runs on prepaid cards and also has an internet connection with a doohinky "ring scroll mouse" I can use to click on a cyber keyboard to type excruciatingly slowly.

I had a quiet day and my port went in smoothly. My neighbor came by with a friend of hers to sit and talk for while.

More details when I have a real keyboard.

Hmmmmm and Wow!

Dr. F showed me the CT scan results from last week. The good news is that the cancer has not spread anywhere outside of my lungs. The not bad but still not great news is that the lung tumors are still slowly growing. I've only had the Xeloda oral chemo and Herceptin IV combination for two months, so the next scan, in October, will be the decision maker. I'll probably stop Xeloda then and go on to a IV chemotherapy drug called Navelbine. I haven't had any trouble with Xeloda side effects at any rate.

Tuesday I go in to have a portacath surgically inserted to a vein on my chest to facilitate the weekly IVs. No more poking and prodding search and destroy every week. In the U.S., this procedure is an outpatient one, in and out in a few hours. Here they keep people overnight. The kids have a few things they can cook and eat and there is a large variety of inexpensive take-out food nearby so I know I can relax during my night away.

A few months ago one of the domestic phone/media companies was offering 1,000 yen gift cards to people who responded to a survey. Women in an online group here requested that their gift card amount be offered as a contribution to help me with my medical costs. Last week 52,000 yen was sent to my account. I was awed by the support and am very thankful to know these women, some in person, most only in cyberspace.

A Nine Year Old

L made a Monster Cake for his birthday. It was actually banana chocolate chip bread, baked in the stainless steel mixing bowl per his instructions to achieve the pot-belly he needed. It was good enough that it didn't need frosting or whipped cream so he used sweet straight pretzels (Pocky Brand) to stick it all together. Friends from downstairs came over and were duly impressed by the obviously home-made cake.

We celebrated the birthday a day early by going to see the new Miyazaki animation "Ponyo" on Tuesday evening. Cute and simple movie with a catchy tune. "Alright already! Stop singing it over and over again!"

I sure showed 'em!

A neighbor gave us some free tickets to Yomiuriland's waterpark so I
took three of the kids yesterday (the other one went off to a track
meet). Most Japanese pools are only slightly deeper than my waist, in
case people can't swim (and so many people never do learn to swim!),
and my kids and their friends never have any chances to actually jump
or dive into the water. This pool had a 5 meter deep diving pool
though, with some low diving boards and a platform about as high as
the old low diving board I remember at our local pool when I was a
kid.

People were enjoying taking turns timidly dropping off straight down
into the deep water and building confidence to actually try jumping
or diving. A few fathers (the moms probably didn't want to risk
wrecking their make-up by getting their faces wet) made everybody
(about 70 people standing around watching and or waiting for their
turn) laugh making huge splashes belly flopping off the 2 meter high
platform. The lifeguards supervised well and made sure that each
diver was out of the pool before they let the next person jump.

My daughter N challenged me to go off the platform so I stood in line and waited for a turn. The lower diving boards had shorter lines so I was able to see N and her big sister J jump a few times while I waited. When my turn finally came, the crowd seemed suddenly silent. What was this fat, white haired, foreign grandmotherly person doing up there on the platform in her bright blue swimsuit? N was smirking in anticipation of a big splash.

Did I walk and stand at the edge and drop off feet first? No, I took
two quick but firm steps and a jump and propelled myself up and over
half the pool, flying through the summer sky in a perfect swan dive
(my first in several decades). I heard a big collective "oooooh!" as
I glided splashlessly into the cool, deep pool.

Boy did I show them! :-) The amazed look on N's face was precious.
I think that this makes up for my dismal performance velcro-wall
jumping earlier this year (which she did enjoy though).

Shave and a Haircut Five Cents

Well, a little more than five cents...more like 3,000 yen, but still a good deal.

I'm noticing that as estrogen levels are down (the chemo seems to
have stopped the menses this time around), my hair (now that it's
grown back) is nowhere near as thick as it used to be yet is
prolifically growing in unnecessary places. Of course half of the usual volume is still more than most people, but my hair line is a little farther north than I seem to remember and a few stray eyebrow hairs showed up farther south (on my chin!) and I had a peach fuzz lion cub face that didn't feel too sexy.

I finally decided to do something about the pelt on my head so I went
to the local barber shop today and got a very short haircut to shape
and control things a bit and I also had them shave my face for an
adventure (included in the cheap haircut). The haircut took about 4
minutes but the shave was a 20 minute mini-spa for the rest of my
head.

This guy caressed my face with his straight razor so thoroughly that I'm surprised I still have my recently regrown eyebrows (they're slightly more precisely shaped than before). He even did the bridge between my nostrils, my eyelids, the bags under my eyes and my ears. Then he massaged my face, head, neck and shoulders. I kept thinking of Sweeney Todd as I submitted myself to the barber's blade. Thoroughly chilling...which was good as today was meltingly hot.

Cyborg

I enjoyed breakfast with my neighbor at the Cancer Center this morning before we headed off for our various medical agendas. She had a mammogram and I had blood tests, an x-ray, a consultation with Dr. F and my Herceptin. Dr. F was concerned that the veins in my right arm are not faring so well these days and he recommended that I have a portocath surgically "installed." This is an overnight stay in Japan although I've heard that it's outpatient surgery in many states. He was ready to schedule me any time this month or next so I requested mid August when S should have some evenings off from teaching as most of Japan is on vacation. It's also probably a busy time at the hospital when people are trying to squeeze in surgery during vacation time.

Other than scheduling my surgery, we also looked at the x-ray results and the lung tumors haven't changed from the pre-Xeloda baseline x-rays of two months ago. Well, they aren't bigger at any rate. I'll know more about how they look after my CT scan on the 29th, which will be discussed on August 5th unless anything really drastic rears its head. The CEA (a cancer marker) number was up a little too, but that's been up and down along the way and is nothing to worry too much about.

My neighbor was finished before I was as I had treatment after my consultation and also had to drop by the pharmacy outside of the hospital to pick up my prescription. She decided to head back home on her own as the mid morning trains are not so crowded. I stopped by the market in Tsukiji to pick up some cheap tofu, cheese and squash before heading home for a late lunch of leftovers and a nap before going to J's school for a mini-concert. The brass band did an excellent job.

Tomorrow I start the paperwork shuffle to get documents from city hall that are required by the hospital at check-in time. They need some proof of who I am and who will foot the bill I guess. I will ask if they can bill city hall directly per a program I've heard about with the National Health Insurance system but I expect it'll be the same old run around.

Sizzle sizzle sizzle melt

N stayed home with a tummy ache and a slight fever yesterday but had too much energy this morning so I agreed to take her and L to the public pool which opened for the summer on the 10th. I was glad my swimsuit still fits but ended up staying in leafy shade of post-blossom wisteria arbor where the ants kept raining on me as I relaxed in the relatively cool spot with a good view of the pool. J was off at an event at the Metropolitan High School of Science and Technology on the other side of Tokyo with a friend, checking out possibilities for next year as they have to choose and test into a high school next winter. M was at track practice in another city as our city doesn't have a full-spec track and their junior high school doesn't have enough space to run more than 60 yards unless they run in the streets, dodging traffic, around the school. The kids go on weekends and pay a hundred yen to polish their techniques on a real track.

S stayed home with the door locked, so M had to break in when she arrived a few minutes before N, L and I did. She was quite distressed and angry to learn that he was actually home and just not answering the doorbell or opening the door when he heard her crawling through the tiny space that any burglar can use to deprive us of our treasures, if they can find any in this mess, that is.

Tomorrow is the second stage of M's Pre-2nd grade test of English proficiency. Wish her luck on the interview. J gets results back tomorrow afternoon from a recent practice entrance exam at a local study center. I have to go with her and make sure they don't pressure her into joining their summer study sessions as several hundred dollars per subject. The test was free and is a good diagnostic tool for her to find the areas she should be brushing up on over the summer.

Summer vacation starts on Saturday and softball, swimming lessons and other things all start on Tuesday. Looks like I'll be up at 5:30 every morning for a while. I plan to take a lot of siestas this summer.

Summer is here - I think...

I haven't turned on the news to see if the meteorological agency has officially declared Japan's extra season, the Rainy Season, over but it sure feels like it must be. We had thunder and lightening at 5:00 a.m. yesterday and the forcasted rainy day blew away with the wind making me sorry I hadn't worn sunscreen when I went out to do some errands. L is running around in his underpants as it's too hot to wear more and too sticky to sit on our chairs without them. The bathtub is full of cool water for the kids to use as a mini pool when they need to cool down.

I started to fill in my datebook with the various schedules and it made me dizzy with how busy the summer "break" is turning out to be. I plan to do as much as possible in the relatively cooler mornings and then sleep all afternoon every day while the kids go off to and return from all of their activities. Slow life - I have to keep telling myself.

Of course, before the actual summer break begins, I'm rushing off to meet friends who will also be tied to home entertaining and feeding their children or who will be off traveling or visiting family all summer. "Hurry up and relax before we miss the chance and can't see anybody until mid September."

Prelude to Summer

I had a phone call at 8:43 a.m. to my cell phone as I was paying my bill at the cancer center downtown before my 9:00 a.m. I.V. M hadn't arrived at school. It looks like J went back to bed after her ham and cheese pannini sandwich and loquats or couldn't manage to roll the others out of their futons. I'd taken a later train than usual to make sure that someone got up...S never came out of his room, probably quietly waiting to see how long they'd all sleep before someone realized the time and raised the alarm. What AM I thinking, leaving my babies to fend for themselves while I take the trash out and traipse off for treatment? How selfish and irresponsible I am! I did explain what I thought had happened, confirm that M was not ill and apologize to the teacher; that's all I could do. All of the sandwiches were gone when I got home at 1:oo p.m. but L and N told me that they didn't eat any breakfast. Sigh.

On an upnote, the two ladies who always get their Herceptin I.V.s on Tuesday morning were already in the lobby when I arrived and one of them told me she's dubbed us the Tenteki Trio. Tenteki is the Japanese word for I.V. so I guess an English equivalent might be the Treatment Trio - One for all and all for one! We wrote our hopes and aspirations on colorful strips of paper to hang on the hospital's star festival bamboo branch of hope (tanabata). Mariko-san, the seniour member of the trio, gave me some rolled sushi she'd made and a can of organic carrot juice which she'd frozen to keep the sushi cool. I had she sushi for lunch at home and it was beautiful and delicous.

N is excited about the 5th grade trip to the mountains tomorrow. She'll walk around with a forest ranger and learn about trees and forest management in the afternoon, have dinner and a bath and gaze at stars with her classmates before bedtime. The next day is a trip to a commercial dairy where the kids will enjoy sampling as much ice cream as they can eat after their tour of the plant. They all come home on Friday afternoon. Older sisters M and J will be grateful for the quiet evenings before their final exams on Thursday and Friday but I'll have to think of some diversion for N and L over the weekend for the Monday exams.

I've been trying to figure out when I can see some friends for coffee or lunch before I get busy with everyone coming and going and needing three meals a day during summer break but the weeks until summer are already looking fairly busy. Last chance before fall...

Wardrobe Switch

With limited space in most Japanese homes, ours included, people tend to store out of season clothes in plastic cases in a storage area or the back of their closets. This involves emptying the dressers and wardrobes and refilling them with the upcoming season's apparel from the plastic cases and then refilling the cases with last season's clothes before trucking the cases back to our storage room in the basement of our apartment building. I procrastinated until the last minute (the week when the schools announce that students may wear their summer uniforms and that they'll need their school issue swimsuits for P.E.) so we're still mid-shift and our place looks like a Salvation Army secondhand shop.

On the way to the National Cancer Center today the students who commute to school stood out more than usual in their lighter colored summer uniforms. I took a local train and was amused to see little girls hesitantly lean out of the doors each time the train stopped so their friends boarding at each station could find them. The students are gradually replaced by sleeping company employees. I still don't know how they manage to sleep while standing up in a crowded train though.

The numbers from my blood work looked OK today and the x-ray I had showed that the lung tumors haven't grown in the past month. My feet were a little swollen from a busy weekend of walking to and from the stadium where M's track meet was held and from irritated toenails, remnants of ten months of almost weekly Taxol. As there appears to be no infection, I didn't ask for antibiotics but Dr. F. did tell me not to hesitate to call and get a prescription if I noticed any pain. The yucky parts are growing out quickly now that I'm off of the Taxol at any rate. A little pink nail polish and I'm all set.

I had my usual Herceptin I.V. , paid my bill and went to get my prescription for the next three weeks of Xeloda filled out. I think that I've gotten used to the drug so I shouldn't be so sleepy this time around. I'll have a CT scan at the end of July to get a closer look at what the Xeloda is or isn't doing and revise my strategy is need be.

I picked up a block of sushi egg tamagoyaki in the Tsukiji street market for the lady on the third floor and headed back to Shinjuku to meet my British friend who'd been shopping there and two other foreign wives. They were just finishing lunch when I arrived but still had plenty of chat left in them to last while I tucked in to my plate of Indian curries, naan and salad. I enjoyed seeing them and having company on the train home.

This evening was my turn to join the junior high school neighborhood patrol so I delivered the tamagoyaki and headed off to school to unlock the patrol box and don an international orange mesh vest with reflective strips and walk around the neighborhood with three other PTA moms for forty minutes. When I returned the vests after our uneventful tour of the neighborhood the track coaches came over to thank me for taking some of the team members to the big track meet on Saturday. It had been a Saturday open house at school so they hadn't been able to take the team and they needed a parent to accompany the members scheduled for that day's events.

It made for a busy day on Saturday but I enjoyed watching the kids go through their warming up routines and competing. M ran in the girls' 800 meter event which was broken down into about 18 heats of 20 or 21 runners and she came in about fiftieth over all, not good enough to go to the "all Tokyo" event in July, but better than her personal best so far, so she was quite satisfied. Her best friend came in first over all in the girls 100 meter hurdles and a few of the other team members also qualified for the next stage.

Rain and Trains

After so many rainy days last week, rainy season here has been officially declared on the public television news. The trains have had troubles with all the rain and have been running slightly off schedule. It made for a bit of a delay on Tuesday when I took my friend from downstairs with me to the Cancer Center for her quarterly exam. We ran into the morning commuter rush and the trains were very crowded. At one station there were eight extra assistants on the platform assuring that the doors would actually close by either delicately tucking people into the train or barring the way so more people wouldn't lean into the masses on the train hoping to be absorbed and on their way to work instead of waiting for the next train. When the doors finally closed, trapping bits of umbrella tips and clothing to get soaked on the way to the next station where the doors on that side of the train open, the assistance crew did gestures to convey departure readiness to the conductor while carefully watching to make sure people were far enough back from the train. I plan to get the Dance of the Metro Assistants on my phone video next time I find myself on that platform in a rainy rush hour. They had lovely neon green vests and white gloves.

I maneuvered a space for my 77 year old neighbor near the courtesy seats and made sure that nobody could shove her or bump into her; she doesn't need that with brittle bones as a long term stage IV breast cancer survivor who beat all those bone mets. The person in the seat in front of us even responded positively to my request to please let my friend have the seat so the trip went well.

We arrived a little after 9:00 a.m. and each went our own way to get the medical part of the day over before meeting another survivor friend who synchronizes her quarterly exams with my neighbor's so they can enjoy lunch together. The ladies of this lunch club seem glad to have someone to watch over my neighbor on the trains there and back and have made me a regular member now. They've already made reservations for September.

I had my heart scan (echocardiogram) and lo and behold my ejection fraction is back up to 75%. This was a relief as I'd been concerned about decline due to Herceptin. Then I went for my I.V. and was just walking out the door of the outpatient chemotherapy center when my neighbor and her friend arrived on the escalator in search of me. We'd all finished early because many of the oncologists were away at a symposium (maybe in Chicago) so their patients weren't in for check-ups or treatment that day.

We went down to the lobby to pay our bills at the newly installed automated cashier machines which naturally had one employee (formerly from behind the cashiers' counter) beside each machine to guide patients in their use. I was a little surprised that the machines accept cash only. Other hospitals using similar machines allow debit cards, credit cards and cash options.

The rain and wind had picked up while we'd been shuffling around getting poked with needles etc. so we decided to take a taxi to the restaurant where we had reservations. Another survivor friend yet joined the three of us and we enjoyed a relaxing two hour lunch of dainty bite sized portions of too many courses of traditional Japanese cuisine for my chemo brain to remember. The discussion varied between comments on the appearance, texture, flavor and ingredients of the dishes and news about various doctors and associations. One of their favorite doctors is now the head of the Hospice Care Association in Japan now and they told me not to hesitate to ask them to contact him if I should have any questions about hospice here. He was also the doctor who got them hooked on this lunch routine. He used to have a big lunch party a few times a year with the women in his care.

Tomorrow is my big day as pre-school teacher for a day. A friend has asked me to substitute while she's off to the States for her daughter's high school graduation. I expect to have a lot of fun singing, dancing and making crafts with the cuties.

Xelodoze

The first week on this oral chemotherapoy went well enough; minimal nausea, no allergic reactions, slight fatigue. The only effect I was concerned about was swelling of my feet and ankles so the new and comfortable SAS shoes sent to me in the mail were too small. I'd been gleefully walking around in them for a few weeks and then BLAM! an alien replaced my already large feet with even bigger ones. A few nights of sleeping with my feet up on a chair resolved that and I can walk on my triple cushioned wonders again. Whew!

I had my Herceptin drip on Tuesday and then spoke with Dr. F. who'd been out lecturing at Tokyo University that morning. We decided that things are good so far and he gave me a two week prescription and sent me upstairs to get a baseline x-ray so we can compare in July.

Wednesday I rode out to the immigration office in Tachikawa with a friend who needed to get a re-entry permit. We met with another friend for lunch and laughs before driving home again to get ready for Wednesday evening classes.

This morning I decided to take a short nap after getting the kids off to school and the garbage out. I dozed off at about 8:30 and woke up when L came home from school after 3:00. Just a short nap...I'm not sure if it's a Xeloda side effect or if I just needed to catch up a little after those nights of half-sleep when I was keeping my feet up on the chair...I'm well rested for the upcoming sports days at each school at any rate. Now to plan all the picnic lunch boxes.

So far, so good

I made my way to the station in buckets of rain as this season's typhoon number four passed near Japan. The 6:30 train was not as crowded with commuters as usual and the trip to Shinjuku was not so packed. I took the looooooooooong escalators down from the Keio Line platforms (which are already underground) to the Oedo Line tracks near the center of the earth and was surprised to see that these trains were less crowded than usual too. I even got to sit down for most of my ride to Tsukiji. By 7:30, when I arrived at Tsukiji, the rain was not so heavy but the wind was whistling strongly through the city buildings. The number of people at the automated reception machines was less than half of the typical crowd. The TV on the lobby informed me that the morning trains for a number of train lines were running 20 to 30 minutes late because of the heavy rain and one train line had stopped completely. My morning train must have been one of the last trains before the delays began.

Dr. F called me in promptly at 8:30 and I told him that I'd decided to start with the Xeloda option. He confirmed a few things and explained again about what to expect and then gave me a prescription for a week's worth of pills to be taken after breakfast and dinner every day. He'll come up to the chemo room next Tuesday while I'm getting my Herceptin drip to give me the results of next week's blood work and ask how I'm faring on the Xeloda before prescribing another two weeks' worth. If I tolerate it well and the blood work looks good, I'll be on a three weeks on / one week off schedule of this oral chemotherapy and continue with the weekly Herceptin IVs for now.

The rain had stopped by the time I finished my IV and headed out the door around lunchtime but the trains were still running a little late. The sun was shining brightly by the time I got home.

I started on Tuesday evening and haven't noticed any trouble so far (knocking on wood).

Translation of Tuesday's Talk

Dr. F showed me my CT scan results and input a summary of our discussion onto the hospital computer file, printing out a copy of the summary for me. Here it is:

Results of the April 22 CT scan show the appearance of a new 1.8cm tumor in the lower part of the right lung. We determined that the effectiveness of Herceptin + Taxol has decreased. Recommend changing treatment to Herceptin + Navelbine or Herceptin + Capecitabine (Xeloda). The chance that either of these will be effective is about 20% and main side effects are decreased white blood cell count and inflamed veins for the former and decreased white blood cell count, diarrhea and hand-foot syndrome for the latter. After these drugs, using Lapatinib (Tykerb) which is due to be approved in Japan within the year, is in range.

As there has been a recent tendency for ejection factor to decrease, we're concerned that some heart damage is beginning to show due to the long term use of Herceptin. We'll re-check in a heart ultrasound in early June.

So, I didn't get any Taxol on Tuesday but I did get my weekly dose of Herceptin as my heart ejection fraction level from the last ultrasound, although lower than previous scans, was still within an average range. I asked for a week to think about the options as I thought I'd better read up a little more on the effectiveness and side effects of each before jumping in to anything. I'm leaning toward the twice a day oral Xeloda even if I still go every week for my Herceptin IVs. I have to make a list of pros and cons though.

The tumors that we were zapping away at with the Taxol have virtually disappeared, so I'm glad that it did work so well while it worked. The new tumor appeared after my January scans though, while I was still on Taxol, so I guess it's farewell Taxol, hello feeling in my fingers and toes (already returning after the three week break I had). The CT scan did confirm that there are no metastases to other organs or bones too. Costs will remain 44,000 yen a month max. after refunds so I won't have to worry about cost limiting my decision anyway.

Velcro Wall Jump

The kids and I (except M who had previously arranged plans) went to the annual Family Fun Festival otherwise known as Oyako Matsuri near the station. The kids were encouraged to make the usual fabric craft flowers to celebrate Mothers' Day and play various games with volunteers. This year the local youth center organization had a stamp rally where kids could get cards stamped for measuring their grip, flexibility and vertical jumping prowess at their booth. Completed cards could then be shown to receive a small prize like a pencil or a figurine or a ticket to try the Velcro wall jump http://www.metroinflatables.com/showgame.html?id=36 which was set up in the large room on the 12th floor where I emceed the kindergarten graduation party a few years ago.

Naturally, the kids wanted to try the ultimate stage of this physical fitness test so we went to get them some stamp cards to record their performance and were told that the parents should also participate. "Fine by me." I thought, and had fun gripping, stretching and jumping up with a string attached to a belt around my waist and a measuring device. Results: I have a much stronger grip than the kids do and I'm more limber than the kids are in spite of my stomach getting in the way but they can all jump about 10 inches high than I can.

Off we head to the elevator for the final stage. N and L were already in Velcro jump suits with Velcro mittens and feet by the time J and I arrived. The wall and a ten yard long "runway" were basically fancy variations of the age old inflated moonwalk with a similar inflated target shaped trampoline between them. This set filled the entire room.

L had trouble picking up any sort of speed on the huge air filled tubes and didn't bounce very high. N's performance was not any more inspiring. J and I were called over to get our Velcro suits. I had to wait until J finished her jump as they only had one large sized suit and the medium large one was just to small for big old me to squeeze into. I watched her struggle down the runway and throw herself at the wall to be peeled off by two volunteers and hoped that the suit would be too small so I could bow out of the potentially embarrassing situation. I couldn't decide which would more embarrassing, being too fat for the suit or to clumsy to even make it to the trampoline, and decided that injuring myself on a huge cushion of air was probably more inconvenient for all involved.

No such luck; the suit fit fine so I bravely made my way to the starting point. I managed to run in slow motion down the runway, jump (more like fall...) on to the trampoline and reach for the wall as I ascended only to find that I'd stuck to the wall before my feet ever left the trampoline. I guess it's made for shorter people. At least I didn't twist or break anything. I did wonder though, on the way out the door, where all the other moms were at this stage. They were probably downstairs getting pencils or cheesy figurines.

Good Pickin's

The ladies of our local chapter of foreign wives of Japanese men held a baby shower for a friend today. It was a potluck lunch and from the lovely assortment of dishes, it was easy to deduce that most of us were ready for a break from Japanese cuisine. We had spinach quiche, a Mexican salad with layers of lettuce, onions, avocado, salsa, olives, sour cream and cheese to be spooned over tortilla chips, cheese and crackers, tomato stewed chicken, a black bean dip with pita bread, a summery pasta salad, a healthy green salad, chocolate chip muffins, a chilled blender borscht with sour cream (yes, I finally found canned beets near Tsukiji!), a friendship cake (the starter was smuggled into Japan in a suitcase), chocolate mousse, a yellow cake topped with chocolate, strawberries and grapes - nothing Japanese on the table at all. We did have a little iced green tea on the drink table, with hazelnut coffee, raspberry leaf iced tea...I was nervous about offering my pitcher of violently purple soup but it sold well, not as well as the chocolate mousse, but that can't be helped. The kids had sushi with S as the lunch was a ladies only event.

A Break

I finished my IV early on Tuesday and had a few hours before my quarterly CT scan so I traipsed over to Shinbashi a few blocks away to shop at Hanamasa, a wholesale grocer, and save a little on the monthly food expenses. The CT scan technicians managed to fit me in a little earlier than my 2:30 appointment so I dragged my sacks of groceries into the changing cubicle with me and was finished by 1:30. The next two Tuesdays are national holidays so I won't have treatment or hear about the results until then unless Dr. F. finds anything he doesn't like, in which case he'll call and have me come in earlier. It's nice to have a break.

Tomorrow I plan to take the kids to the other side of Tokyo to watch M run 800 meters in a track meet if the coach deigns to accept her application to continue in the track team. The students have to sign up every year and he was giving M and two of her friends a hard time yesterday about appropriate attitudes, discouraging them from ever doing track and field again. The traditional thought, according to S, is that degrading students and telling them to quit is supposed to encourage them to try harder. Silly me, and I thought he was telling them to go home when he shouted "Go home!" to them. Sigh. The coach called last night to apologize for misjudging a situation and overreacting and asked if M and the other two girls could come in at 7:30 to discuss and resolve the situation. Hopefully peer pressure won't keep them all from throwing in the towel just yet; they're all pretty good at the sport.

More on the unexploded bomb

It seems that the bomb was never actually dropped, but that the number 1 engine of B29 T-42 (also known as Mrs. Tittymouse) of Squadron 875 was hit by flak and the plane lost its left wing, last seen going down in a spin on 04/07/1945. The bomb must have been part of the debris from that crash. An account written by a Japanese man who was a child in the neighborhood at the time describes the strong smell of gasoline and the shock of seeing the picture of a topless girl on the nose of the craft surprise that the plane was equppied with beverage dispensers offering coffee, tea or milk at a time when the Japanese military did not take indvidual soldiers' preferences into consideration even if it had been possible to offer such luxuries. He was also saddened to see how young the crew members who did not survive seemed when laid out in a row before being buried in the local temple, Empukiji, graveyard. The eleventh crew member surviced and was taken prisoner and sent to Omori POW camp and returned to the States after the war where he struggled much with PTSD.

This Week's Big News

On March 27, 2008, an unexploded 1-ton bomb thought to have been dropped in an April 7, 1945 U.S. B29 air raid was discovered buried in a neighborhood yard along the train tracks. Japan Self Defense Force experts have assured the city that there is no danger of explosion without strong impact so the yard has been cordoned off and security personnel have been dispatched to keep watch while the city informs the neighbors of disposal procedures and precautions. The city has announced plans to regulate traffic and clear a 500 meter radius of neighborhood around the bomb on May 18 for disposal of the unexploded ordnance. We're about 700 meters away but there are two stations and quite a few residences and businesses, including a 32 floor high rise apartment and two large supermarkets within the evacuation area. Apparently the Keio Line's underground train line pre-construction magnetic exploration and stories of the April 7th air raid led to the discovery. Maybe the entire neighborhood can come watch this year's city-wide kiddy sumo that day at the American School in Japan on the very far side of Chofu from anything (well outside of the 500 meter radius).

Rainy Tuesday

I left breakfast and lunch (well protected from the cat) for the kids and headed off to Tsukiji for blood work, an exam and discussion with Dr. F. and my usual full course of Herceptin, anti-nausea and anti-allergy pre-meds and Taxol with a saline chaser. We decided that as the neuropathy (numbing of my feet and hands) is not progressing and I'm not getting any rashes or other cumulative side effects, I should continue with the Taxol every three out of four treatments for the time being. Last night I spread out the CT scan images of approximately the same slice of my lungs from Oct2006, Feb2007, May2007, Oct2007 and then Jan2008 to visualize the journey so far and try to imagine how much smaller I can zap the lung tumors away with a little more Taxol. I still expect that I'll stop the Taxol sometime this spring as I don't like the side effects of the pre-meds (mainly the weight gain and sleepiness) and see that the tumors are back to their Oct2006 size (when I wouldn't have noticed them without a CT scan) and weren't taking up precious breathing space like they were from Feb2007.

The Herceptin has been effective in halting any tumor growth and I expect it will continue to do so even if I stop the Taxol. With the weekly Herceptin treatments, I could enter a stable status even if the no-evidence-of-disease NED stage is unreachable. I've been very blessed to receive support from a number of ladies in an on-line group to help me continue with the weekly treatments for the next year. Their encouragement and financial assistance has lightened my burden. I'm so relieved to know that I don't have choose between getting treatments and feeding the family.

I managed to get back in time to take L to the dentist as the dentist found two small cavities on Friday morning when I took all of the children in for a check-up and maintenance before the new school year. J's cap on her front tooth needed repair but she and her sisters had no cavities. L had one of his treated on Friday and the other today so they're done for a while. I asked my oncologist about precautions before dental work because one of my 25 year old crowns came off. I'm scheduled for next Friday morning now.

Time to tackle some of the new school year paperwork that each of the kids has brought home for me. I think we need an IN box and OUT box for each child...

New School Year

We managed to keep everyone entertained during spring break and are clearing out the desks and closets this weekend to make room for all the stuff each child will need in the new school year. I thought I was making good progress sorting clothes and putting winter things away but all of the room I made has just been filled with a big load of hand-me-downs from a German friend in the neighborhood. Her youngest son is J's age so L now has a wardrobe that will last through at least 6th grade.

We had a lot of picnic lunches to make the most of the wonderful spring weather we've been having so the kids are all looking forward to school lunches as a reprieve from onigiri (lightly salted rice balls wrapped in nori seaweed).

I traded my crossing guard duties on Tuesday with the mom who had Wednesday morning and wrote in all the class PTA meeting schedules on the calendar and I'm very ready for everybody to go back to school.

Why I never got a job with CBS

End of School Year

For most schools in Japan, the school year is from April to March with a few intervals off between each of the three trimesters (spring, fall and winter). We're looking forward to about two weeks off before L,N,M&J begin 3rd, 5th, 8th and 9th grades respectively. Ninth grade is the final year of mandatory education here and J will need to study for and take examinations to qualify to enter a high school. Both public and private high schools require some sort of tuition but the public schools cost much less.

The schools are rated on the level of competition to enter and the difficult to enter places seem to have more rigorous academic levels. There is a large variety of schools, some more academic, some offering practical occupational training. Most of the kids from our junior high school tend to go to the academically oriented schools in hopes of continuing on to university or occupational training schools later. We visited a few schools last year to get a feeling for where she might like to attend but have made no choices regarding goals as of yet.

I imagine that as M has different interests and strengths, we'll have to do the same school touring and searching next year to find an appropriate school for her. I'm thinking that I won't possibly be able to attend all the PTA meetings in a few years when we have children in four different schools, two of them probably a train ride and/or a bus ride away. I already have a hard time making it to all of the class meetings with two children each in two neighborhood schools.

I missed N's last class meeting last week because my IV took longer than expected and I decided to meet Mrs. Y for a late lunch instead of rushing back to apologize for missing the meeting. I made it to L's mini concert and last class meeting of the school year after pumping furiously back to the elementary school on my one-speed bicycle from a short afternoon of M and J's presentations in the jr. high gym. This Friday I'll attend half of a class meeting each for J and M as they've been scheduled for the same time after a general meeting in the gym for the 7th and 8th grade parents. Then in April, we do it all again to meet the new teachers...

I enjoyed the company of my neighborhood British friend on my trip to the cancer center today. She met me on the way to the station at 6:30 this morning and brought along crossword puzzles and a book to entertain me. She was even pleasant when the steroids made me all sleepy and I couldn't help out with the clues too much. I hope she had time for a nap this afternoon after the early morning and long trip. I slept for about an hour after I got home while L and two friends played Nintendo games in another room. Not much of a hostess...but L was glad to be able to have his friends over as he usually goes off to play at their places and we need to reciprocate once in a while.

Twins?

The mother of one of L's playmates who lives near the junior high school asked if L had two elder sisters there. She wanted to know if they were twins and was surprised when I said that they were in 7th and 8th grade. She went on to comment on how much they look alike and how wonderful it was that they were both in the track and field club. She'd seen them running laps around the school, one always a few minutes after the other. She was flabbergasted to learn that it was only M running lap after lap and that J is in the brass band. M was pleased to hear that her speedy laps had confused someone into thinking she was twins.

March is the end of the school year and M and J have three days of final exams next week so I'm taking L and N off for a sports event tomorrow and a friend's birthday on Sunday to cut down on the commotion factor so the girls can study a little.

Not much happening

I've had a cold three weekends in a row and spoke with my oncologist about it between the second and third times. My white blood cell count is still plenty high, which is good in terms of treatment. I just come into contact with too many people I suppose. We did speak about taking a break from the Taxol (chemotherapy) part of the regime from March or April and staying on the cancer supressing Herceptin as a QOL decision (quality of life).

I'm looking forward to seeing Mrs. Y, my former host mother, on Tuesday after treatment and then will going in a little later than usual the next Tuesday as my downstairs neighbor has her quarterly appointment and would like to travel there with me. The trains are less crowded after 9 a.m. but the wait for a chair or bed for the I.V. may be a little longer. This shouldn't be a problem though, as it is my "Herceptin only" day this month and the I.V. itself will only take an hour or ninety minutes instead of three hours. We can chat if she finishes before I do and then come home together.

Sorrow

I haven't posted much lately. A week ago today a seven year old little boy from down the hall was hit and killed by a kindergarten bus and we've all been quite sad. Today his little brother started taking his own kindergarten bus again but already he seems a little more grown up after losing his big brother and the week of mourning, wakes and funerals disrupting and changing his life forever.

HATS HATS HATS! Free Shipping!

I just updated my links on this blog to include a link to CJ Hats, a company founded by an Inflammatory Breast Cancer survivor who really understands about comfortable head wear and full coverage. I have about an inch of hair in some places now (this time around I have a very receding hairline and look like Phil Collins), in spite of the continuing chemotherapy and I am very glad to have nice hats to keep my head warm and comfy so I don't have to wear wigs everyday. Some of my hats are from friends here in Japan who have knitted, crocheted or sewn them and others are from CJ Hats. Mary Ann, the owner, offers advice and encouragement in addition to a very large variety of hats at very reasonable prices.

Right now, CJ Hats has a FREE SHIPPING OFFER and it's WORLDWIDE! (Friends here in Japan are often frustrated by the lack of international shipping services when shopping on-line). The site http://www.cjhats.com/ explains that shipping within the U.S. is free for orders over $50 and internationally for orders over $75.

Smells Goooood!

The funny and nice old woman from downstairs came by last night to ask for a loan of some rice until her pension arrives in mid February. She is very tiny and any shopping at all involves a long trip to the store and back with her day pack. She uses the day pack to keep both hands free to find her way there and back and it takes her about an hour to navigate the journey downstairs, out to the street and slightly more than a hundred yards down the street to the nearest convenience store and back and she tells me that the two or three items (a sweet red bean paste filled roll, instant noodles and a chocolate bar usually) that she buys are very heavy to carry. I can't imagine her lugging a few pounds of rice home from other farther away stores (she is specific about where each type of product should be acquired and very loyal to each store she visits). Although she is very reluctant to make use of the various delivery services, not wanting to be seen as anything but totally self sufficient, she has relaxed a little and will let me help out with the rice and a few other things, always insisting on giving me money later, when her bimonthly pension payments arrive. She always insists in paying me more than necessary so I stop by with treats like the sushi egg omelets that I "have too much of" or brownies, which I know she likes. Yesterday she stopped by to chat for a couple of hours while I cleaned the kitchen and she decided to give us her toaster that she never uses. Now I'm baking bread so we have something to toast this morning.

Forgot to say thanks for the s'mores....

We had an early Christmas dinner on Dec. 22 followed by S'mores made with ingredients in the big box Mom and Dad mailed us full of Christmas presents. It smelled like a summer evening with all the marshmallows roasting over individual candles. Roasting time was greatly increased due to lower calories of tea candles versus the heat of post BBQ coals. It made for an entire evening of fun.

Happy New Year!

Winter break is winding down. School and treatments both begin on Tuesday.

Warmest wishes to everyone for a happy and healthy 2008.

Dragging a bit, but hanging in here

I've had a busy week consulting people about jobs and about planning for the future as it looks like I need to contribute more financially. No specific plans have been made as I am still in the information gathering stage. Frugal yet nutritious recipes would be welcome.

My Cancer Center guardian angel fellow survivor brought me some delicious inari sushi she'd made so I enjoyed lunch during my IV yesterday and came home after a quick trip to the market to pick up some sushi egg omelets paid for and requested by a downstairs neighbor. Oysters, with which I've had some bad gastrointestinal reactions a long time ago, were being marketed nearby and I had a sudden revelation "Hey! I bet I could eat oysters on Tuesdays with all the anti-nausea and steroids I get for the chemo..." I didn't try it out though. Just a weird idea that came to mind.

I did find a cheap turkey at the poultry wholesaler so we'll have a turkey dinner on Saturday and turkey fajitas and turkey noodle soup later in the week. Something to look forward to.

OK, who was the last person out of the bath?

Our family follows the Japanese custom of using one big, deep tub of hot water for all of our baths each night. The actual washing is done outside of the bathtub and we soak up to our necks in relaxing hot water. A little hot water is added along the way if it cools down too much and each person lats the next person know that the bath is free when they emerge in their pajamas. When the kids were all small, it was easy to toss them all in at one time and do sort of a factory automation version of shampoo, shampoo, shampoo, shampoo, rinse, rinse, rinse, rinse, soap, soap, soap, soap, scrub, scrub, scrub, scrub, splash, splash... but now they're all big enough to enjoy relaxing on their own in the tub. The last person is expected to replace a roll-over cover we have to keep the water warm in case S wants to take a bath after he comes home or to keep condensation down. I can use the water for laundry the next day if it is still fresh enough.

This morning I heard a big splash and some sneezes from the bathroom as I was getting breakfast ready. I rushed over to see what it could be to find Koro swimming around in circles in last night's bathwater. She'd jumped up to where she must have expected the hard cover only to dive in to the bathtub. What a surprised but not angry look she had on her face. She seemed quite happy to be scooped out and wrapped in a towel. I should have checked that the top was on last night but I got tired of waiting for everyone to finish up and I went to bed earlier than the last couple of bathers. Once the toddlers are big, it's easy to let one's guard down. Wet cat!

Another Good Day

I figured out the mystery of the woman who gave me lunch last week. Her name isn't Chiyoko after all but Mariko. I'd planned to bring her some persimmon bars that I'd baked without sugar but the kids liked them so much that there weren't enough left. Also, I made them with butter instead of oil and Mariko is avoiding dairy products. Today she brought me more genmai rice balls and a tangerine for lunch, some pretty pickled onions and peppers in a jar, some more rice for dinner and a tupperware box with potato salad and broccoli for dinner. We chatted and her children are my age, but in Kyushuu, one married with a child and the other a nun in a Trappist order, busy baking Christmas goodies this month.

It looks like the Tuesday crowd is getting to know me; a man and his wife waiting their turn (his probably) for a blood draw smiled and told me to keep up the positive attitude and enjoy all those children of mine. The wife had been talking with my new friend Mariko. It seems like a lot of people smile in my direction there and I wonder if my wig might be askew sometimes. I usually smile back anyway. I'm getting used to seeing some of the same faces and I'm sure they remember me.

My monthly exam with Dr. F. was as thorough as ever and things are well. He scheduled me for the next season's round of scans and tests all the way through April so I could get into the system before it gets all crowded. I asked about changing the Christmas I.V. to the 28th as it is a waste to not keep blasting away and I'll have January 1st off, giving me a 2 week break from Taxol anyway.

Yay! Grr! Ack! and Beyond

Monday was the annual foreign wives cookie exchange and the large container full of lemon bars I baked on Sunday night evolved into two containers of a delightful variety homemade cookies from a dozen or so other wives and moms. The kids were quite impressed with the beautiful creations but didn't hesitate to enjoy munching away at the delicious treats.

Tuesday I made sure that two out of four were awake and sitting at the breakfast table before I headed off to Tsukiji. I got a seat on the train (yay!) and arrived in time to check in at the machines which accept our plastic Cancer Center cards and print out our itinerary for the day (yay!). Then I discovered I'd brought the wrong bag with me and that I didn't have my plastic card (Grrr!) so I had to wait until the manned reception desk opened at 8:30 a.m. to check in. I expected this to delay treatment a bit as I couldn't go for the blood tests until after that and I'd end up having to wait a little longer to check in at the chemo room. Oh well, what's a few extra hours of reading time before treatment starts...

The nice lady at the reception counter was able to re-issue a card, print out my schedule and send me on my way upstairs very efficiently. As I read my schedule on the escalator, I saw that I didn't have a blood test scheduled after all (Yay!, I get enough of them and they're always well within the safe limits to get treatment anyway.) I was able to advance directly to the oncology nurse station right when my doctor was walking by to his office. He looked around to see that the usual nurse was busy out back and asked me and another of his patients to hand him our files so he could send us on our way upstairs to the chemo room. (Yay! Back on schedule again!).

The other woman was dressed flowingly in muted oranges and bright pink and stood out as much as I did in the sea of grey, brown and black. She announced to me "Chiyoko went to the mission school." I assumed she meant herself, as sometimes people refer to themselves using their first names (but not much after elementary school). Her husband is/was and artist and she gave me a copy of a painting he had done of Mary. She said the original was currently on tour. We registered upstairs and headed back to the lobby to pay our bills before the late morning / early afternoon congestion at the cashier's counter. A gentleman of 70 or so was headed to the escalator too and he made a nice gesture and told us "After you" in English with a pleasant smile. My new friend Chiyoko was quite excited as in her 76 years she'd never received such treatment or so she said as she gave the man a huge smile and thanked him. I think is was our brighter colors and my blond wig that gave him a few smiles.

I went to the ATM so get some cash to pay at the counter only to find that the credit card bill for last months groceries had been deducted from the account yesterday and I had to shuffle funds from several accounts to get enough cash for the payment. (Ack!) This took a little more time than expected but I was able to hand in my paperwork and pay before heading back upstairs.

We sat together and talked while we waited for the bills and Chiyoko-san said she's on the same treatment as mine now but that she'd had full brain radiation (gamma knife) recently for the metastases to her brain. She seemed to be doing very well. She disappeared somewhere as I was paying my bill only to reappear back upstairs, outside the chemo room with some rice balls she'd taken from her lunch box to wrap in paper towels and offer to me for my lunch. We were each called by the nurses then so I thanked her for lunch and went to my reclining chair for my full course. She was on her Herceptin only day so she finished and left before I did although I was done by 12 (yay! so early!). I expect I'll see her next Tuesday too.

I walked to Ginza again to get a little exercise, catch a different train back to Shinjuku and save a few yen and I was home before 2 p.m. Today I'll go update the bank books and see why I haven't heard from city hall about September's reimbursement.

Slumbering Angels

My downstairs neighbor had her quarterly check-up at the Cancer Center today and I took a later train than usual so we could go downtown together. I made sure to put breakfast on the table and leave the Tupperware and chopsticks that J and M needed to take with them for their post final exam rice cake pounding event before waking J up with instructions to wake everybody up in time for school. My neighbor and I managed to arrive at the hospital a little after 8 a.m. and go our various ways for check ups and treatments. Her survivor friends also scheduled their appointments today so they could get together. They kindly invited me to lunch with them when I met them after my treatment just as they were finishing up with Dr. F.

Thinking that the kids were already home as both schools got out a little early today, I decided I'd go ahead and join the ladies for lunch as it was already too late to rush home and be here before they got home anyway. We had a pleasant time and my neighbor and I got home around 4 p.m. to an empty house as the older girls were at club or team practice and the elementary kids were out in the park with friends. I noticed the answering machine light flashing so I pressed the button to hear "This is Mr. H. from junior high school. Neither J nor M have arrived at school this morning..."

That's when I found the uneaten breakfast on the table and deposit of pyjamas, discarded school uniforms, dirty socks etc. scattered over the yet to be folded and put away futons. Guess I should have called the kids from the hospital instead of assuming they were all already in school. Oops.

I called the school to make sure that the girls had arrived in time to take their exams and was told that they had arrived with a few minutes to spare, just after the teacher had called. Whew!

S went to help out at the rice pounding event, kindly taking the necessary Tupperware and chopsticks that had escaped notice in the apparent rush to get out the door. J said that there was one 7th grade boy running a few hundred feet behind her as she ran in the front gate so she was glad that she wasn't the latest kid.

Wishy Washy Day

I gave a sample for my blood work this morning and was promptly called in for my check-up. My oncologist had printed out results from my Ct scans of July and of last week to show me how much the Taxol (the ultimate head lice control drug) had shrunk the tumors in my lungs. This was encouraging. He asked about all the possible side effects and examined my hands, checked for lumps, listened to my breathing, looked carefully for any swelling and asked about the general quality of my life to determine if the treatments have been affecting my quality of life. We discussed extending the Taxol treatments until I notice more side effects and he typed in a schedule for up to 26 treatments in the computer. So far, the only side effect that is worrisome is the gradual numbing of my feet. For some reason, my hands haven't been affected yet (knock on wood) but my feet feel like I've been skiing all day and my old (not very warm) ski boots were buckled too tightly. This isn't really a problem as I've always been a little clumsy and as long as I wear my SAS shoes or other well cushioned sports shoes, I'm OK. If this neuropathy advances to a point where it changes my gait, I will probably stop the Taxol and, per the original plan, keep up with the Herceptin. There goes the 20 time countdown goal.

I asked to see the bone scan results from a few weeks ago and he showed my that my skeleton had a little illumination on a spot on my upper left rib cage and another spot on my right hip that weren't there last November. As I have no symptoms (pain) the current course of action is to stay on the Taxol/Herceptin menu and keep an eye on the spots. These scans detect trauma (breakdown and regeneration) to bones and it might not necessarily be metastases to my bones and could be a number of things (I am a little clumsy and could have bumped my hip and the rib cage spot was radiated two years ago...). I need to research a little more. I tend to think that it is cancer spread, but feel that the Taxol is probably working on this too. Not shattering news, but still a little dismaying.

I walked around Shinjuku Station and Yoyogi today to get my exercise and look at the hundreds of men setting up billions of Christmas lights the Takashimaya Times Square area. What a lot of electricity and manual labor for a generally Shinto/Buddhist metropolis.

Sunday Fun

J and I left breakfast and lunch on the table with a note for the younger siblings and S who were sleeping when we tiptoed out the door at 8 a.m. to go to a musical instrument fair in Yokohama. Getting everyone out the door in time and dragging them to Yokohama would have detracted from fun for the day all around (J would have had to rush through the exhibit so we could get out before the other three broke anything and they would have been grumpy about tagging along when they could have slept in) and increased our total round trip time ("Where's L? OK, now where's N?...."). Our student/sometimes helper and his sister came over in the afternoon to play with the younger kids and the kitten, so they weren't at all unhappy about being excluded from the day trip.

We checked out Xaphoons (handmade bamboo saxophones from Maui), ouds (guitar-like Middle Eastern instrument with beautiful mother-of-pearl inlay and 11 strings), saz lutes and all sorts of unique instruments as well as a plethora of mainstream instruments and accessories. J was most impressed with the contra bass saxophone in this photo. There are apparently only four of them in Japan and this is the only privately owned one. The other three belong to various symphonies of bands. She was ecstatic when the people at the booth kindly encouraged her to play the monster sized sax. She actually managed to play a song from her brass band fall concert program, but it was hard to get the sound on the video of my cell phone as the very large conference center was filled with booths of other visitors sampling instruments and the low frequency output of the huge instrument couldn't compete with the din of clarinets, trumpets, alto saxophones etc. She had a great time.

We arrive home to sit down and play with Koro and her guests who were kind enough to bring Baskin Robbins ice cream.

An Early Day

Today was a Herceptin only day so I finished fairly early and had time to walk to Ginza and back before my early afternoon CT scan. On the main street, it is much closer than I thought from my previous foray via round-about back streets.

Nice Nap / Neighbor in Distress

The pre-Taxol antihistamine really hit me hard today so I took a nice long nap after I got home and L complained about my loud snoring. I woke up very refreshed and started getting batter and vegetables ready for tonight's OKONOMIYAKI.

Around 5:30 the little older lady from the third floor came up with a cane today, a first for her. She'd fallen down on Sunday and can't go shopping but is extremely reluctant to call for the government provided care services which she is eligible for or to go see a doctor. She asked if I'd be shopping tomorrow and if I could pick up a few things for her, giving me some money. I've decided to keep a record of the money as she tends to hand out more than necessary and I now she'll run out of cash before her next pension payment arrives in December at this rate. She stayed, talking while the kids and I cooked our dinner at the table, declining any because she had already eaten, but carefully watching how we cooked it all at the table. She'd never seen an electric griddle (hot plate) before and was very curious. After I finished cleaning up, I escorted her downstairs with some rice, tangerines, crunchy KARINTO sweet snacks and moleskin type medicated pads to put on her injury.

Next time I'm at city hall, I'm thinking of asking at the advisory desk about available assistance for solo geriatric citizens who really need assistance but are so reluctant that they would rather sit at home and drink tea for three days in a row before asking anyone for help shopping for food. It seems a little "Big Brotherish" but I've seen posters encouraging neighbors to feel free to consult. I know that ultimately it will be up to my neighbor to accept the assistance and I hope that the city hall personel will be professional and well equipped to convince her that she shouldn't feel shy about accepting the subsidized assistance she is eligible to receive and is actually already paying for with her health insurance payments.

A Variety of Events

M was up and out early with a lunch of two types of onigiri (rice balls); salmon and wakame seaweed and pickled plum and dried perilla. I sent her off with some other moms of athletes on her team for the second day of the big metropolitan jr. high track meet. Then I came home to make a sushi salad lunch for J to take to school open house observation day at school(M was exempted from school but her team mates who didn't qualify for the track meet had to go to school). She managed to drag herself out of bed and off to school grumbling a little about not being able to go to the neighborhood field day with S, N and L. I then packed appropriate lunches for the field day group; a dish called KATSU, which is a homonym for the verb "to win" (small pieces of pork breaded and deep fried), slices of spinach omelet, simmered sweet potatoes, more onigiri rice balls in several flavors, apple slices and barley tea. That got wrapped in a large square cloth and put into a bag with the plastic picnic sheet and cameras.

L and N woke up soon after the bag was packed and we all got ready to go. I took the picnic lunch to school with S, N and L to watch the first few events before heading off to the jr. high school for the "First International Communication Event" for the 7th graders. While I was setting up our picnic sheet, the head of the management committee from our building came over to say hello and give me some tickets for free games at a nearby neighborhood festival. He'd gone out of his way to get four tickets so the kids could all play at least one game. I gave them to N and explained that she and L could go after the field event, warning her not to dawdle as the festival would be over at 4 o'clock.

I left the field day fairly early, politely declining to join the tug o'war team for my corner of the school district in favor of meeting my Bulgarian friend for an early light lunch. We then headed of to J's and M's school to help set up. Our British friend soon joined us and the fun began.

The kids made and ate lots of minestrone soup and then heard the trio of foreign women with Japanese names talk about school in our countries. The 7th graders did a great job and my friends and I managed to talk long enough but not too long, coming away leaving a pretty good impression, according to some of M's friends who reported to her about the afternoon when she stopped by school on her way home from the track meet this evening.

L and N picked up a friend, one of our students, at the festival and he was entertaining them and enjoying the cat when I arrived home around a little after 4 o'clock. S was off giving a make-up class for one the students missed yesterday due to a standardized test eating in to the usual schedule.

It looks like we'll all call it an early night and go to bed soon after such a busy day.

Koro

Here she is. The name "Koro" is equivalent to "Spot" as N excitedly referred to the yet unnamed addition to the household as "the dog" when she thought it was her turn to hold it and pet it last week. She kept shouting "Who has the dog? I want the dog!"

Things have calmed down considerably and Koro seems happy to have people around 24/7, gladly curling up on the closest available lap. S was a little gruff about how much responsibility a pet will be and how we shouldn't have one, but he has been caught coo-cooing and playing with the kitten on several occasions and has inquired about the kitty food supply a few times, so Koro is here to stay.

Yesterday's Herceptin/Taxol infusions went well. It looked like rain so I decided to get my walking in for the day done by strolling through the Ginza, Tokyo's fashionable shopping area. It is about a 10 minute walk from the National Cancer Center and a universe away in atmosphere. The Cancer Center neighborhood has lots of guys in rubber boots and aprons hawking all sorts of seafood, vegetables, restaurant supply stuff etc. and stands selling cheap bowls of noodles, curry or raw fish on rice in fire hazard narrow alleys. Certain shops had lines of disheveled morning shoppers waiting for famously cheap and good treats for post shopping snacks or early lunch. The Ginza area has the Hermes, Fendi, Salvatore Ferragamo, Bulgari, Cartier, Chanel crowd tapping down the avenues in heels that would cover a few treatments at the Cancer Center. There was a long line of aromatic, well dressed ladies in front of a coffee shop selling Belgian chocolates. Fortunately the pre-Taxol part of my IV has anti-nausea meds so the perfume wasn't too overwhelming.

Meow

J rescued a kitten from the middle of the street today. She put it on the side of the street and tried to walk home but it squeaked and mewled miserably and followed her so she picked it up and asked around the neighborhood to see if anyone might be missing a kitten. Nobody knew of any recent litters of kittens and she ended up bringing it (her)home. She really wants to keep the kitten but our building has a "no pets" rule that can be broken for goldfish and other critters which can live quietly in small aquariums but not for puppies and kittens.

I found a comfy cardboard box to keep drafts out, trimmed the kitten's long and sharp front claws and fed it a little well mashed cat food and evaporated milk diluted with warm water and the mewling doesn't seem so pathetic now. When S gets home, J will attempt to convince him to allow the rules to be broken for a while and she'll try to find a home for the little thing. It looks like it's about a month old.

Lots and Lots of Tuna

The bloodwork room at the hospital was a little busy today after a three day weekend so my results weren't ready until a little after nine this morning. When they were available, I had my pre-treatment exam with Dr. F. and things look fine. I noticed a little pain over my lower ribs on my left side so we decided to move this year's bone scan up a month and I'll go back to Tsukiji on Friday morning for an injection of isotopes, wander around the fish market for an hour or two, go back and take a nap in the cramped machine where my radioactive bones slowly project their images up and out of me.

I finished my Herceptin/Taxol treatment at about 1:00 p.m. so I went to buy some sushi style egg omelets to use in J's and M's lunches tomorrow. I wore my Meg Ryan (more like Tryin'!!) wig and a cute guy at one of the tuna specialty shops called out his wares to me, addressing me as a young woman (ojousan). He must be partial to blonds; he gave me a 50% discount on a huge pile of very fresh tuna. (It was almost closing time, so that may have factored in...)

J was off at a friend's house when I got home, studying for the rest of her mid-terms tomorrow. She called at about 6:30 to ask how much longer she could stay. When I told about tonights menu, sushi rice topped with nori flakes, tuna, chunks of the omelet block, sesame seeds, soy sauce, chopped green onions and wasabi, she decided that she'd studied enouh and would come right home. I told her to invite her friend and they both rushed right over with a 5 kg bag of rice as a house gift from the girl's very generous mom. This is the mom who invited all four of our children to spend a few nights with them when I was in the hospital three years ago.

I had the kids assemble their own "maguro don" tuna rice bowls and all were pleased with the very fresh fish and the sheer quantity. Usually I have to creatively spread the tuna to hide the rice but thanks to the cutie at the market, today was a real treat for all. I sent some fresh sushi omelet (I bought two types, one plain, one with chicken and vegetables mixed in) home with J's friend in appreciation of the rice.

I wonder what style of hair the men at the big vegetable and fruit stand like...

What's Missing From This Picture?

I figured that my parents haven't seen this much of my head in about 42 years so I thought I'd go ahead and post a photo of my coiffure or lack thereof. I don't have many eyelashes left and I need a little practice drawing eyebrows...I'm down to the final 8 Taxol treatments and should finish in early December so I'll have more hair by Christmas.

I'm so full!

Our nephew and his son and daughter picked up his parents, sister and niece at Haneda in a rental car and drove them over here early this afternoon for a late lunch. The kids were excited about the visit because they had such a good time last year when we all went to a hot spring/spa in downtown Tokyo for a day the last time they were in Tokyo. I chose simple make at the table type food so I could sit down and enjoy the visit. The make-it-yourself sushi rolls and cook at the table takoyaki went over well. We topped the meal off with a plate full of persimmons, Asian pears and big purple seedless grapes around 5:00 p.m. and nobody was particularly hungry for dinner. A few slices of apple were all that some could manage.

N, however, in her usual bottomless pit style, is munching away at a unique roll of sushi she's made with leftover salmon, salmon roe, tuna, squid, cucumber, edamame (boiled green soy beans), chrysanthemum petals, wasabi, soy sauce and sushi rice in nori. She even took pictures with my cell phone as she created so she could have her sushi and eat it too. She inadvertantly achieved a dreamlike quality to her photos by rubbing her slightly greasy fingertips over the camera lens (now the phone smells like day old fish). I love it that she absolutely has to try everything, but hope that she doesn't want to share her sushi with me just now. I'm avoiding making eye contact with her by posting on the blog.

J and M were very glad to spend time with our grand-niece R from Kyushu. They've met her a few times when we visited Kyushu and when SIL and she and came to stay for a few days a few years ago. She's in the same grade as M, but is almost a year older. She and her mom brought pretty blue topaz necklaces for me and the girls as gifts.

S seemed to enjoy the meal with his brother. It was great to relax with everyone here at home instead of going out somewhere and worrying about keeping all the kids entertained and under control. Out nephew's son and L are the same age and his daughter turned 6 yesterday. N had fun playing older sister and even took all the "younger" kids to the park for a while.

Our niece (R's mom) and SIL were very helpful and all the dishes were washed and the kitchen was sparkling before they all drove off to our nephew's place to spend the night. I enjoyed the time we spent together as they are very pleasant and encouraging people.

Still Tickin'

Every three months I get a heart ultrasound exam to make sure that the Herceptin isn't damaging that important organ. The doctor who did today's exam confirmed that my ticker is as strong as ever and that staying on the drug is no problem at this point. I'd stopped by the chemo room to put in my order for today's treatment before heading upstairs to the ultrasound room and they were ready for me as soon as my exam was over. I finished before 11 and was home for lunch.

Bragging

M was in the city track meet yesterday. She jumped and ran in three events and came home with two gold medals and a bronze medal. Not bad.

12 Taxol Treatments Under My Belt

It looks like I'm tolerating this stuff fairly well and it is working (hurray!), so the plan is to stay on for a while longer, possibly up to 20 times, so I should start growing some hair around Christmas.

Next week is my Taxol break and I'll have a Herceptin only day so I've scheduled my quarterly cardiac ultrasound then too to make the most of the trip to Tsukiji. S's brother and family will be visiting on the Sunday afternoon after that so I'm glad I'll have a little more energy next week.

M will be in a city-wide track meet on Sunday so I expect we'll take a picnic lunch and enjoy what we hope will be fall weather. It has been so hot that J still has swimming in gym class this week.

Invitation to Speak

M's teachers have been asking her lots of questions about me lately, trying to scope out whether or not I'd make good lesson material. She confirmed that I could probably manage to speak in Japanese and that I'm not a terrible cook, among other things. I must have qualified; I had a call today from the head of the year asking if I could participate in a general studies session/event on Sunday October 21st during a school open house and talk to the 7th grade about my first impressions of Japan and provide a recipe (and probably the actual cutting and cooking) for a "foreign" food that can be cooked over campfires behind the school and consumed at lunchtime with rice.

I suggested a big pot of minestrone soup, thinking that it might be economically feasible and epicurically (I know, it isn't a word, it just sounds like one) tweak-able to a simple enough flavor that the students won't waste the entire pot just because of too many tomatoes and a little oregano. It might not be particularly American, but neither is chili, either of which were more likely to be approved than Rocky Mountain Oysters (bread crumb clean-up is pesky and the hot oil is too scary over an open fire...even if I could find the proper ingredients locally).

They liked my idea and will be in touch with me again after they recruit a few other parents for manning the fires, chopping, stirring etc. They're hoping I can bring a few friends from other countries to talk about food and culture and things which may have surprised them when they first came to Japan too. I said I'd ask around but that most of my friends might not be available on Sunday or, if they were, might not be able to contribute to the menu. So...any takers?

The now bilingual recipe (which may just show up as gobbledygook on non-Japanese encoded computers), using local ingredients, is as follows:

Simple Minestrone Soup for 5 (100) people
５(１００)人前分　かんたんミネストローネ・スープ
120 g (2.4kg) carrots, chopped 1cm角に切ったニンジン
90 g (1.8 kg) chopped cabbage適当に切ったキャベツ
1/2 (10) celery ribs, thinly sliced薄くスライスされたセロリ
1/2 (10) onion(s), chopped 1cm角に切ったタマネギ
1 (20) slices bacon, chopped　適当に切ったベーコン(optional)
3 g (60g) garlic clove, minced みじん切りニンニク
10 ml (200 ml) vegetable oil サラダ油
710 ml (15 l) water お水
1 (20) (14.5 ounce/ 411g) can(s) diced tomatoes, in tomato juice 　　　　　　　　　　　
缶詰め角切りトマト、汁ごと
3 (60) beef, chicken or vegetable bouillon cubes固形スープ（コンソメ）
95 g (1.9 kg) cooked elbow macaroni 茹でたマカロニ
0.5 g (10 g) pepper胡椒
0.5 g (10 g) salt 塩

Saute carrots, cabbage, celery, onion, bacon and garlic in oil for 5 minutes. Add water, tomatoes and bouillon; bring to a boil. Reduce heat. Simmer, uncovered, for 20-25 minutes or until vegetables are tender. Stir in macaroni, salt and pepper; heat through.
野菜、ベーコンとにんにくをサラダ油で５分ほど炒めてから水、トマトと固形スープをたして、沸騰させてから弱火でふたをせずに２０～２５分又は野菜が柔らかくなるまでにこんで、マカロニ、塩と胡椒を混ぜ入れて、よく温めます。

A bay leaf or two and/or some oregano would be nice, but not necessary I suppose...

Busy Weekends

J is in the second of three years of junior high school. That's as far as mandatory education goes in Japan and, although public high school education is available, entry to high school, public or private, is determined by rigorous entrance exams. This means that there is a variety of schools to choose from and that most of the nice ones are a bus or train ride away. It also means that J needs to check out a few schools to see what she wants and figure out where to focus her studying over the next year and a half until the entrance exams (each school has their own $300 entrance exam so we'll try to whittle it down to a challenging school and a shoo-in). Hopefully she can qualify for and want to attend the better public schools as they only cost about $2,500 a year in tuition and other costs plus whatever the textbooks will cost that year. Private schools are three to four or more times that plus fees for uniforms.

Last weekend many schools had open house / school festival events so we went to three high schools in three days to do our scouting a little early. There were many anxious looking 9th graders checking out the schools as well. They'll be taking exams in early February for April matriculation. Of course we had to take N and L with us and there were lots of fun things for them to enjoy while we checked out each campus. Some of the classes had organized games or scare house fun.

L insisted on going through the haunted house at one school but begged me to go with him. We were handed a flash light and directed into a dark classroom where all sorts of things popped up in front of us as we made our way through, thoroughly scaring him. The "ghosts," all 10th graders, had trouble not smiling when they saw how cute he was, so it wasn't all that terrifying though. One even apologized for jumping out a few seconds too early. "Boo! ...Ooops, sorry." M didn't have track practice that day, so she came along with us and seemed to be inspired by how fun high school looked and how outgoing the students there were. She'll have to work a little harder if she wants to go there because it is one of the more competitive schools to enter around here. Somehow a picture of me in my beanie at the PTA coffee shop showed up on the school's website. Ugh!

The kids got to try tea ceremony at another school and learn more about taking trains to get around. We stopped by a station with a discount shoe store on the way home on Sunday and got L equipped for his fall season of running away from all the girls and had lunch at a cheap spaghetti restaurant where N spilled a large iced tea all over herself and the floor, prompting the kind staff to quickly mop the floor where she then proceeded to noisily drop her silverware. Wet and embarrassed, she was a perfect little lady for the rest of the meal and we bought her a new outfit at the post-summer clearance at UniQlo nearby. $5.00 for a skirt and a T-shirt and she even looked like a little lady. I carried her raggy and wet favorite sportswear home in a plastic bag.

The next day, N forgot her "handbag" on the train on our way to the Tokyo Metropolitan International High School causing a slight delay. The stationmaster told us that the cleaners would check the train at the end of the line and he took my name and a description of the dollar shop bag and advised us to stop by on our way back through the station later that day. The bag was found and placed in the lost and found at that end of the train line, in Chiba prefecture, a mere two hour detour..."Ah, I think I'll pick it up before my IV tomorrow because it is closer to the hospital and I can't be late for class today..." got a sad nod. She was having a tough weekend with all of these learning experiences...

Of course the next morning I had to leave for the hospital on a later train than usual because S was away and I had to make sure that everybody was up and ready to go off to school before I left so I decided to make the detour on my way home instead. I managed to get to the hospital by 8:30 and my doctor saw me at the reception desk on his way by so he went and got my files to approve them and send me on my way for treatment before his first appointment. I was finished by 1:00 p.m. and back on the train soon after.

A few stops, a transfer and 20 minutes or so later found me at the very far end of our train line where N's bag, complete with about $30 and her library card, was waiting for me to sign for and take home. There was also a vegetable stand right in the station selling the local produce so I bought some nice big potatoes for baking and a big bag of fresh tomatoes for a very good price. The cheap and fresh veggies made up for the extra train fare and I was back home by 3:00, a few minutes before L walked in the door from school.

N was very happy that her bag came home and only complained about a few pieces of origami paper she thought might be missing. All were happy with their baked potatoes for dinner. Next weekend we'll visit a few more schools and spend some time at the Shinto Fall Festival in the street near our house on Sunday.

Looking Goooood!

I had an x-ray before treatment yesterday and got to see the results. Compared with the early July x-ray, the spots in my lungs are much much smaller, some are even hard to find at all. It's nice to be able to breathe more easily physically and psychologically. I spent the morning at the gym swimming laps and feel full of energy now. S's elder brother (#2) and his wife and daughter will be in Tokyo for three days next month so I'm getting a little more serious about keeping off any more weight and hopefully loosing some by cutting out on sweet snacks and swimming more. Every new medication I've had so far lists weight gain as a side effect but I think I can take some of the responsibility...

I joined Skype this week because I finally got a headset with a microphone for the computer. It was fun to talk with a friend in Vermont without worrying about phone bills although we did have a few echo cho cho choes. The only other problem I see is that none of my friends or family are awake when I'm up and online...I'm sure we can coordinate sometime via advance e-mail notice....

J is off every day to a movie prop company in the neighborhood on a three day work experience for school. She was impressed yesterday with a large storage area full of nothing but samurai headgear and another room full of books in foreign languages for use on TV show sets. It sounds like most of the work she and three other classmates are doing is lifting and carrying.

Safe and Sound

The worst of the typhoon was during the night and we had no worries in our big concrete building. There was a cyclone about half a mile away from us and that neighborhood was out of power overnight because the electric company couldn't make repairs in the typhoon. The children were happy to sleep late on Friday morning and the sun came out as predicted, that afternoon.

Typhoon No. 9

Today's after-school activities have all been cancelled and the students have been sent home promptly as the edge of this season's ninth typhoon has reached Tokyo. Heavy winds and much rain are expected when the main part of the storm hits Tokyo around 7 p.m. today so I rushed out and stocked up on beer for S. The children each came home with a letter informing me that school will not be canceled but rather postponed tomorrow so they don't have to walk through the worst of the wind and rain which is scheduled to stop abruptly at noon.

Last Weekend of Summer

M has made the transition from U.S. East Coast time to Tokyo time very smoothly. We made sure to keep her awake until at least 9 p.m. and sent her to track practice the morning after she returned. She had no trouble waking up early this morning to go to a track meet with her team by train and bus. She wasn't here when the coach registered everybody so she and a few other team mates who missed a few days of practice won't actually participate, but they're expected to go to the meet anyway as "practice" for another meet that they will be in at the end of this month.

I was a little tired from the trip to Narita to get M plus the usual late nights and early mornings. I was up a little before 6 this morning to make a lunches for M to take with her and for the rest of us to take with us as we had plans to celebrate the end of summer homework pressure by ignoring the homework and going swimming with friends. The pool wasn't too crowded as most kids were probably home slaving away at their homework.

Tomorrow is more lunches and more places; M will go to the second day of the track meet to cheer the team on and we'll cycle over to cheer S on at the second half of the citywide PTA softball tournament. In the afternoon we'll pack up all the school stuff so each child can grab it and take it all back to school on Monday. It will be nice to have more space on the floor and no crustaceans in tanks among the jumble of shoes in the entryway.

We'll get all the futons out and make some dinner for S (who will be off teaching in the evening) before we leave for the evening soccer game so we can crash as soon as we get home and be ready to wake up and start the second trimester of school and the fall routine. Whew!

A Quick Note

I've been a little busy since Tuesday and haven't had time to post. All is well and I'm off this morning to pick up M at the airport when her flight arrives around 3:00. My parents called to report of her safe departure and had all sorts of heart warming compliments that made me awfully proud to be M's mom.

The siblings made a "Welcome Home" banner to hang on the wall and we'll have roll-your-own sushi rolls for dinner tonight to celebrate. I hope that M will be able to stay awake for dinner. We're all looking forward to seeing her today.

Festival Fun

The street in front of our house was closed for a few hours this afternoon for the annual YOSA KOI Dance Parade. The local commerce committees of neighborhoods at either end of the street hosted street party festivals and we spent the day being entertained and nibbling on barbecued seafood.

The kids were in a contest to see who could drink a bottle of fizzy soda called ramune http://en.wikipedia.org/wiki/Ramune the fastest to win two seats at a soccer game on Sunday night. My son finished first in his group of 6 1st and 2nd graders and then my daughter finished first in her group of 3rd and 4th graders so we now have 4 "SS reserved seats" at Ajinomoto Stadium in western Tokyo for a J League professional soccer game between Tokyo Verdy 1969 and Thespa Kusastu. It's nearby so I may send the kids alone if they're all ready for school the next day. I could wait outside at a cafe.

We were given some tickets for a neighborhood raffle. The prizes were donated by shops along the street where we live so they ranged from coupons for free massages at a neighborhood clinic, 11 lb boxes of greenhouse tangerines, autographed soccer goods, household electronics, cosmetics, coupons for yakitori chicken, rice crackers, a digital flat screen TV, a fancy semi-powered bicycle, 22 lb bags of rice etc. Friends and I laughed about how much we'd appreciate some of the prizes and which prizes we didn't really need, like a hair dryer or 30 lbs of kibble (not much hair, no dog).

The drawing began and a neighbor was the first to win a 5,000 yen box of two deluxe watermelons. We only had a few tickets and didn't expect to win anything but were enjoying the afternoon breeze and just being out with friends. It was a very big surprise to hear our number being called for the next prize, which was......drum roll......the hair dryer.

I and my friends whooped with laughter as J went up to pick up our new powerful 1200w professional-use beauty tool, retail value 8,190 yen. It is probably nicer than the dryer we already have which nobody ever uses but we've decided to put it up for sale in a local Tell and Sell Yahoo group. I think it would blow what little hair I have right off.

Final Week of Summer

We're down to the final few days of summer (but not necessarily the summer heat) and will spend this week shuffling stuff around the apartment making sure all the back-to-school things are in order and that space is cleared to make room for M's return. L will spend this afternoon finishing up his summer homework so we can check it, put it in his school bag and forget about it. N will have a friend over to complete their joint origami project and torment L.

I took N and L with me to a foreign wives coffee morning and was glad to see some nice ladies and hear how their summers have gone. Having the young ones with me meant that I didn't have to rush home to feed them lunch so we did a little shopping with some department store coupons I'd been carrying around for a while and bought some dinner ingredients and a little gourmet ice cream to treat them for being generally well behaved.

I spent the rest of the day tying up loose ends on a few jobs, taking L to the dentist and cooking dinner. The school pool will re-open for a final week of swimming fun tomorrow so I won't have to work so hard to keep N and L entertained.

Nine Days

Nine days until M returns. We are all anxious to see her soon. Cousin Richard sent some photos from a family gathering and we were glad to see that all look well.

Today's trip to Tsukiji was uneventful. It was a little busy this morning and I had to wait a little after my consultation with Dr. F. before my blood test results arrived on his computer. He saw a few patients after my exam and called me back in when the results were available to ask a few more questions and send me on my way upstairs to the chemo room. It was almost 11 by the time a recliner opened and my costly cocktails were mixed and ready for my IV to begin. I watched a Steve Martin movie on a DVD player, both borrowed from the nurse station, during my Herceptin hour and napped on steroids for my time on Taxol.

I walked out of the gentle airconditioning of the Cancer Center into the wilting Tokyo summer heat and swam through the humidity a hundred yards to the subway station and its cooler underground air and highly airconditioned trains. Now I'm at home on the 7th floor with all the windows and doors open, catching late afternoon breezes and thinking about actually starting on some of the translation work which has a Thursday deadline as well as about what to do for dinner. Harry Belafonte is telling Senora to shake shake shake, jump in "de" line and rock her body in time and the steel drums and calyspo are helping us pretend we like the weather.

Crayfish Crisis

L brought one of the second grade crayfish home to take care of over the summer. It had grown considerably since its capture over a year ago when the then first graders hiked to a nearby agricultural high school's experimental farm to fish for the creatures in the farm pond, which must have been stocked for that purpose every single child managed to catch one...The students who didn't want to keep a crayfish as a pet at home let theirs go back into the farm pond and each group of four or five students adopted one to keep at school and observe.

The clear plastic case had a list of names of the children in his group who usually take care of feeding the crustacean and cleaning the cage during the school year. None of them volunteered for the summer job so L brought the case home with him on the last day of school, along with a plastic bottle with a baby crayfish for him to keep, and did a fairly good job of making sure the water was changed and food was offered regularly with a little help from N. His friends asked about the crayfish from time to time, making sure that their group still had a crayfish.

Well...while we were off on our annual camping trip, the balcony must have gotten too hot as both crayfish failed to survive three days of neglect, even though we'd tried to shade their cases to keep them out of any direct sunlight. L was very sad at the loss and also worried about what his group would do without a crayfish. We decided to tell his friends about the demise of their crayfish and ask them if they felt we should take some chunks of squid on string to try to catch a new crayfish for their group to observe. They all agreed that they were sorry to lose their original crayfish but that they still wanted to care for a crayfish at school from September.

So...N, L and I headed off on our bikes for L's first (very wobbly) on-road bike ride to see if the ag. school farm about a mile away was open to the public or not and if we could catch and keep a crayfish or two. The teacher in charge told us that usually they don't allow the crayfish to be taken home as it would be a problem if people let them go in local rivers and the crayfish population became a problem. When I explained the situation, he agreed to let us catch two to take to school in September. Whew! Now L will write about his exciting first bike ride and the crayfish crisis as part of his summer homework.

Smooth Sailing

I arrived at the National Cancer Center early and had to wait a while for the reception desk near the examination rooms to open so I could give them my patient card to get my charts and have my oncologist authorize the day's treatment. A few minutes before the offices opened for the morning, my oncologist came striding down the hall and gave me a big smile on his way to his examination room. He must have decided that I looked well enough for treatment because he came back out of the "authorized personnel only" area a few seconds later to ask me for my bar-coded patient card so he could personally access the hospital computer and authorize my treatment a few minutes early. The receptionist was surprised to see me already on my way up to the chemo room on her way to the reception desk and I was finished with treatment early enough to enjoy a leisurely lunch with one of the wonderful women who have been encouraging and supporting me through these treatments. Now I feel very refreshed and am ready for for our annual camping trip, except for the picnic lunch that I should be making as I type...Okay okay! I'm on my way to the kitchen and beyond.

Shrink shrank shrunk

As expected, the CT scan I had last week showed that all the tumors in my lungs are much smaller. My doctor asked all sorts of questions to determine if I've been experiencing any neuropathy, did a manual and visual exam to make sure I don't have any lumps or swelling where I shouldn't and carefully inspecting my fingernails (which aren't particularly more brittle than usual) and finally we spoke of future plans. Other than a few creepy crawly feelings across the top of my feet once in a while, which could be short hairs landing after a gentle descent from my still thinning breeze-catching coiffure and blowing away before I actually see them or could be the beginning of temporary nerve damage, I haven't noticed any nerve troubles so far. No palpable or visual troubles were found. Next week is Herceptin only and then the following three weeks will be more Herceptin and Taxol, another Herceptin-only week and then three more Herceptin-Taxol weeks before returning to the weekly Herceptin maintenance regime. He asked about my summer plans to see if any rearranging in the treatment plan might be needed and also let me know that he'll be away on the 23rd of August but that another competent oncologist would look at my pre-IV blood work and authorize the treatment for me.

I slept through the entire I.V. and had to splash my face with a little water to perk myself up for the train rides home. I was back before 3:00 and off to school to pick up some forms from City Hall for L's upcoming dental appointments. He had a few cavities according to the school dental exam so we'll take care of that over the summer.

J arrived home from Canton last night so we made pizza tonight to celebrate and let her have something that wasn't Asian for a change. The three of them are watching a DVD from a set of three that she bought for about 300 yen in Canton which has 140 Tom and Jerry cartoons in it. The disks have Chinese and English soundtracks and subtitles which can be selected accordingly. She had a great time with her classmate's relatives. Now she has to settle into the rhythm of summer in Tokyo, which is cooler than Canton but still hotter and more humid than I prefer.

J says that this was a royal bed...




Lion? Bulldog?

Summer is Here!

N and L have been falling asleep very early this week because of their strenuous playing and swimming every day. We spent a few hours at the elementary school summer festival to cool down yesterday evening but decided to skip the second evening there and relax at the city pool in the afternoon instead. I was careful to wear a swim tee-shirt and lots of sunscreen. We enjoyed cool and colorful shaved ice at a stand after our swim. L is getting a little heavy for the back of my bike, especially back up the big hill on our way home from the pool, but he's still not quite ready to ride his own bike outside of the local park just yet. N and L are looking forward to J's return on Monday, expecting souvenirs of course.

L's Day Out

With N busy all morning with softball and swimming, J and M away and S off teaching all morning, L decided he'd rather go with me to Tsukiji than sit around home alone until his afternoon swimming so he took the 6 a.m. train with me to Tsukiji. We had seats on both trains all the way and had a little time to go up to the 19th floor of NCC to enjoy the view before I started on my round of blood draws, a consultation, a CT scan, pre-payment of today's bill, shopping for more tea to go with our onigiri (rice balls) and the weekly Herceptin-Taxol IV. He was very curious about all the needles and got to watch all six stabs I got today.

It should have been 3 stabs; one for the blood draw, another for the CT scan contrast and then a final one for the IV. My veins were not cooperative today and the CT scan tech needed 2 tries and and so did the chemo room doctor and then we had to switch the treatment IV after the first Herceptin part as it was leaking outside of the vein which would have been a big problem if it had been the more caustic Taxol. I ended up letting the CT scan tech and the chemo room guy use my surgery side arm to save a few veins in the usual IV arm. This is a no-no in terms of lymphedema (swollen arm) prevention but I figure that the arm has survived without much lymphedema for two years and eight months my arms were covered with tufts of sterile cotton and clear tape by the time we finished.

L borrowed a DVD player and some DVDs from the reception desk and sat at the end of my bed to enjoy "Toy Story" and "A Bug's Life" while I relaxed with my drip. He managed to eat his lunch and snacks without mashing too many crumbs into the sheets and only spent the final ten minutes spinning around and around on a nearby stool out of boredom.

We stopped by at a friend's house on the way back for coffee, conversation, creme brulee, and a book exchange. L was very glad to play with a friend and shyly impressed by the friend's pretty three year old sister. I was glad for a chance to do something social to break up the day. Very refreshing!

On the train on our way home, I heard someone call my name and looked up to see a former colleague sitting across the aisle from us. It was a pleasant surprise to see her after 14 years. She's still working at Sogo (my old company) and had heard of my ongoing treatments from Mrs. K., the boss' wife who came to Chofu for coffee and catching up last month. We re-exchanged phone numbers and said good-bye at Chofu Station where L and I got off to rush home to N.

N did a good job of holding the fort down this afternoon and was rewarded by the arrival of a child sized softball mitt from a kind and generous foreign wife friend in one of my Yahoo Groups (Thank you R). She did take a three hour nap after her morning exertions but it looks like she'll be ready for bed by 8:30 tonight, as will L.

Tsukiji Update

As I only had Herceptin last week, there was no need for a blood test this week to monitor my white blood cell content so instead of seeing my doctor for a pre-chemo check-up, I was supposed to just ask the nurse at the examination room reception area for my file and continue on up to the chemo room for my treatment. It always takes five to ten minutes for my file to be produced and the nurse to confirm that "yes I feel fine" and there have been no problems over the past week.

I was lightly snoozing in my chair near the reception desk when I heard a man's voice call my name. My doctor had brought the file out himself to tell me that he'd scheduled me for a CT scan at 10 a.m. next Tuesday and warn me to skip breakfast until after the scan. I'm looking forward to seeing how the Taxol is working. If the results are good, I won't hear about them until the next week's consultation but I expect he'll call if there is any bad news so we can re-group and plan the next strategy quickly. This is a month earlier than I expected to get a peek at my lungs.

I have energy today so I finished up some translating work, went swimming and did some shopping before logging in and frittering the afternoon away on the Internet. Class as usual tonight and then tomorrow I take M to Narita on the early morning bus for her flight to the States. Her suitcase is ready to go and we just need to find something appropriate to wear on the journey.

Precursor to Summer Vacation

We're in the middle of a very wet three day weekend before the last four days of school and then summer vacation. A friend is here and they're all playing well together.

I would enjoy summer vacation a little more if it were indeed a vacation. The kids are expected to go to school every day for the first two weeks for swimming lessons and the junior high schoolers are expected to go to club or team practice every day. They'll all have loads of homework to be turned in on the first day of school in September. N has signed up for the summer softball team at the elementary school and practice is every day from 6 to 8 a.m., before swimming. The tournament is on August 19th so she won't have practice the last two weeks of summer vacation.

M and J will have a few points taken off of their gym marks for not showing up for summer swimming as they will be making the most of some multi-cultural opportunities and won't be around at the required time. I hope black marks of non-participation won't affect their future prospects. (eyes rolling)

I'm wondering when we can fit in some quality summer fun. I'm sure we'll manage somehow and that I'll be glad when school starts again (mainly that I won't have to think about what to feed everybody for lunch everyday, even noodle lovers can tire of cold noodles).

Taxol Break

In order for me to continue to tolerate Taxol for as long as possible, I'll be taking a break after every three treatments. This week was my first break and I went in on Tuesday for Herceptin only instead of Herceptin and Taxol. I started early and finished early and was home again by lunchtime. I feel much more energy this week so I guess the Taxol was a little more taxing than I'd thought it would be, but tolerable. Last week and the week before I had to drag myself out to walk or get errands done but I could get out and around.

I felt great today so I went to the gym to swim a little. After I showered and stretched I noticed that the water level in the pool was down about a foot from the usual level. The usual little old ladies walking and swimming their laps splashed away as usual but all had to stop and laugh when big old Kathy stepped in and the water only came up to my hips (I was laughing too, thinking that my very presence raised the level a little for the rest of them). I managed to swim for forty minutes before heading off to the showers and bath. It looks like there will be some maintenance in August so I hope they fix whatever the problem is.

Then I tackled the huge pile of laundry and sorted out clothes for M to pack for her upcoming trip next week. I accomplished quite a lot and actually found the floor in the back room. Now I'd better stop writing and get some dinner on the table before going out for my Wednesday evening classes.

Hot and Humid

I appreciate the nice air conditioning all morning on Tuesdays these days. This morning I had an X-ray scheduled for 8:30 a.m. so I took the 6:30 train (before it got hot) and arrived at 7:30 to avoid the crowds and register for my pre-consultation blood tests and get the x-ray over with ASAP. I finished all the consultations and treatments by 1 p.m. and was home a little after 2. The x-ray showed that the Taxol has been shrinking the tumors a little.

Next week is my Taxol break and I'll only get Herceptin because taking a rest after every three treatments should keep me in shape enough to continue the Taxol longer. My scalp is feeling a little tingly and there is lots of hair on my pillow in the morning but I look no different in the mirror. The white hair seems to fall out first, I guess because it grows faster than the brown hair so the Taxol attacks the fast growing cells. I wonder if they should up the dosage to accommodate for all the Taxol that goes to my overabundance of hair... :-).

I think I'll try to get early appointments all summer so I can be home when the kids are home in the afternoons.

Better Day Today - Whew!

The pains yesterday didn't make any repeat performances today and the doctor thinks it was muscular pains from the symptoms I told him about. Blood work went well and I got my Herceptin and Taxol lunch special and made it home by 3:30 this afternoon. I am so glad that I feel so much better today. I was a good girl and I wore my white surgical mask there and back.

The jr. high school students are home early from school this week as there are no extra-curricular activities like band practice or track and field so the kids can study a little before their final exams. It is M's first experience with "tests that count." and she's been diligently looking through her textbooks and notes.

The elementary school should have started swimming lessons during gym class but they have a policy of no swimming in the rain or if the combined air and water temperatures are less than 50 degrees C (122 degrees F). What a waste of the school pool! What's wrong with purple lips? They've been begging me to take them to a pool every weekend but I think I'll pass on that and try to enjoy activities a little closer to home with fewer people around.

Holy Cow!

Until this morning, I've managed well enough with annoying discomforts that can be endured for the purpose of shrinking the ugly cancer in my lungs. This morning I managed to get up, feed the kids, make some lunches for the two who had no school lunch today and send everybody off to their respective schools. A half an hour later I started to get an ache in my chest which I felt could be from coughing all week. I noticed one of the girls had forgotten to take her packed lunch so I set off on the bicycle to deliver it to her school. By the time I got to the school I was wondering if I was having a heart attack the pains became so severe and spread all over my left side and around to my back (but not the arm). I didn't feel up to climbing to the fourth floor to find out which daughter forgot her lunch and lucked out when a teacher headed that way offered to take it to the teachers' room to have the homeroom teacher deliver it for me. A quick guess at which daughter might be lunchless and some thank yous later, I was wobbling back home on my bike, the pain increasing.

I decided to lie down for a while to see if the pain would subside and it did, after a little less than an hour. I slept all day and went off to teach my Monday afternoon classes and will definitely ask my oncologist about this at tomorrow's visit.

This is the first "pain" and not just discomfort I've had in this cancer experience and because I've always thought that I had a fairly high threshold for pain, it worried me that I had any pain at all. There could be a number of reasons for it from listed Taxol side effects (I'd have thought that this type of pain would be closer to the time of infusion and not 6 days later though) to panic attacks, tired muscles from coughing all week, pleurisy, viruses or heart attacks. It'll probably be something like a bra that was fastened too tightly (Where did I put that bra extender?).

Seems like I'll never run out of things to talk about with my oncologist. I'm glad things have calmed down at any rate, whew! The good news, I got the right daughter and she was grateful for the delivery.

Shorn

Feeling incredibly light headed after deciding when and where to leave the majority of my locks. I've heard varying stories regarding hair loss on Taxol either thinning or complete loss of hair and decided to start out with a very short cut and wait and see what happens.



Here's the "before" shot from last Saturday. I enjoyed a wonderful evening with the women from our old English playgroup, celebrating a birthday of the current leader with some nice wine and wicked chocolate cake. Very relaxing and lots of laughs. I don't know why this text is bigger than the text above, but hungry children are needing some lunch...

Hair We Go Again!

I asked about this cough that has been keeping me awake nights since the weekend and my oncologist sent me for a quick x-ray to determine if we should go ahead with today's Herceptin or not. He also prescribed some antibiotics and cough suppressants which I had to buy at a pharmacy near the hospital so that cost won't be included in this month's high medical cost refund system. Fortunately these medications were only 1,300 yen. Anyway, I went on up and got my x-ray after a fairly long wait as it was a busy day at the NCC. Then I made my way back down to Dr. F's office and he brought my fresh images up on his high resolution computer screen as well as results from my last x-ray a few months ago. He said that my coughing is from the cold but that it may be worse than just a cold as the cancer in my lungs is taking up important breathing space and that I could start on Taxol right away or next week (if I wasn't feeling up to it because of the cold) instead of in August. Basically, we were waiting for some symptoms to kick in before bringing in the big artillery and this cold qualifies as a symptom in his book. Being well enough to truck on in to the NCC qualifies as being well enough to get treatment so I opted for starting today.

So, I had to send an e-mail canceling plans to meet a New Yorker BC survivor friend who also lives out here in western Tokyo who is getting daily radiation at another downtown hospital. We'd been planning to head on home together. She was finished by noon, but I was just getting started on my five course deluxe treatment. I took a photo with my mobile phone...



The menu?

176 mg Herceptin in 250 mL saline solution for 1 hour (kick butt)

8 mg Dexart (Steroid) in 50 mL saline solution for 15 minutes (anti nausea)
?? mg Zantac (just noticed this was in the mixture too)

10 mg Chlor-Trimeton (Antihistamine) in 50 mL saline solution for 15 minutes (anti allergic reaction)

160 mg Taxol in 250 mL saline solution 1 hour (kick butt)

and

50 mL saline solution 10 minutes (flush veins)


I asked about anti-nausea meds over the next few days as this is what I've done in the past but as I'll be getting the Taxol weekly, the doses are smaller and the premedication steroids by I.V. are supposedly all that I'll need. So far, so good, I made it home OK on the train a little before 5 p.m. and actually feel better than I did this morning now that I have some cough medicine and anti-biotics. Now I have to look for a few more bandanas, scarves and summer hats to be ready in two weeks if and when the hair starts falling out. A cool look just in time for the heat of summer.

Martha Stewart Moments

A neighbor reminded me today to cook the pie and not the books to avoid getting Martha Stewart style ankle accessories. Good advice.

The recipe for J's birthday fruit tarte tells me to roll the sweet pastry dough to about an eighth of an inch thickness after I've chilled the dough for 20 minutes to make it a little firm and easy to work with. In the 30 seconds from refrigerator to the table, these 20 minutes of refrigeration were negated in the heat and humidity today. I tried, I really did, but I ended up scraping it all back together into a ball and manually pressing it into the pie pan for a more rustic appearance remniscent of my Play-Do years. It is now chilling and letting the the poor mangled gluten rest a little before I line it with aluminum foil and uncooked beans or rice to bake until golden brown. The oven light is not working so I guess I should get the flashlight out of the disaster readiness box so I can peek in from time to time.

While the dough was enjoying its first cool rest I went ahead and made the vanilla custard. With six egg yolks this tarte is not for anyone on a low cholesterol diet. My right arm is a little tired from all the whisking but this part of the tarte can qualify as a success. I even made a glaze by diluting, heating and straining some apricot jam. This will need reheating before brushing on the fruit topping at the last stage of assembly. After I bake and cool the shell, I'll coat the bottom with a little couverature chocolate that I've been hiding from the kids (who would want to use it for banana chocolate fondue upon discovery). This should keep the hopefully golden brown pastry from getting soggy after I fill it with the lovely custard.

Then the kids get to finish the process by trying to hide all the custard with mango cubes, cherries, sliced kiwi fruit, sliced bananas, blueberries, chunks of canned peaches and whatever other fruit we can find and brushing with the reheated apricot glaze for a brilliant sheen. This is the dangerous part, as too many cooks can jostle the pie and dump it on the kitchen floor. I have an emergency caramel roll sponge cake hidden in the back of the fridge for such contingencies.



I've finished the tough parts and have washed all the unnecessary utensils that I will remember to skip using next time and now should probably get started on making dinner as I'll be out teaching tonight.

I had my regular heart ultrasound yesterday and it is still big and strong so there is no trouble with continuing Herceptin.

Time flies!

It's already time for another ultrasound exam of my heart to make sure the Herceptin isn't doing me in faster than the cancer would have. I haven't had any palpitations (but I haven't seen the new Johnny Depp "Pirates" movie yet) and have been walking and swimming regulary so I expect to come through with flying colors.

Speaking of colors, both junior high girls were on the "green" team last Saturday at their school's sports day. They ran fast but were not able to surpass the "red" team this year. There weren't enough girls in their respective classes so both J and M were asked to run twice in the class relay race to even out the numbers. I washed and ironed the long green sashes that the school lent them to use as team headbands. They had Monday off to make up for the school event on Saturday.

M will run in a western Tokyo jr. high track and field event this weekend. L and N have school on Saturday as a special parents' observation day and emergency/disaster school pick-up drill. They get next Monday off while J & M head off to school as usual. I hope to pick them up at school on Saturday and rush off to the station with a bag full of onigiri to head out to the track where M will be running as it is her first event and we'd like to be there even if she's going through the "Oh no, I'm so embarassed my little sister and brother are here!" stage. Knowing my luck, we'l get there just after she finishes. At least we can see some of her teammates compete and walk around Minami Osawa on the way home.

Next weekend is the junior high Saturday observation day so J & M will be home the Monday after that. That's four Monday's in a row with two kids home. It confuses my sense of time a little and I never seem to know what day it is anymore.

May Onco. Update

I saw my oncologist today and the lung mets seem slightly smaller but now he's concerned about an enlarged lymph node right smack dab next to my heart. (Roseanne Roseannadanna "If it's not one thing, it's anuthah!") We compared the same images from February's scans and it's a little hard to tell if it is swollen or if my position was 5 mm off from 3 months ago so a slighly different perspective is offered.

I still have no cancer related symptoms so we decided on careful observation and continued weekly Herceptin IVs for now. He did give me a very big smile when he said that the Herceptin is working. If the August scans show further enlargement we'll blast away with Taxol and keep up with the Herceptin. The Taxol would be weekly with a one week break every month and I'd have to be careful about neuropathy so I don't mind waiting until I have some symptoms that need relieving before beginning possibly debilitating treatments.

Today seemed to take forever as it was fairly crowded so I didn't get home until about 4 p.m. but I did enjoy the time as a British friend came along to talk the time away. We worked on crossword problems and laughed at trashy magazine articles and news.

A Very Sunny Day

After a very wet day yesterday, we were concerned that today's sports event at the elementary school would be postponed. The fourth graders made 101 "sunshine dolls" (teruteru bouzu http://en.wikipedia.org/wiki/Teru_teru_bozu ) to ward off the rain and they worked a little too well. It was so sunny and hot that the teachers announced a special break halfway through the morning to get the kids out of the sun for a short time and let them drink cold barley tea in their classrooms while the spectators roasted away outside. This was a first in our eight years at that school. I'm glad I used sunscreen and wore sunglasses.

The school was divided into two teams, red and white, to play against each other. L and N were both on the white team this year, fortunately, and they lost 601 to the red team 626 points. The difference was small enough that all the kids seemed to have fun and nobody was too excited about winning or losing. Some of the events were non-competitive, like dancing or gymnastics. We're all a little tired after a long day in the sun.

Kiddy Sumo 2007

I took L and N to the Wanpaku Sumo registration tent at the local shrine at the appointed 7:30 a.m. on Sunday. After a lot of waiting around, some long speeches at the opening ceremony and some demonstrations of improper moves (using the mayor as a test dummy) the matches began. Halfway through the first grade matches I sent L off to get his mawashi, the wraparound Sumo "underwear" put on over his gym shorts. AS it was a tournament type event, each player continues until he or she loses and then they watch their friends or go off and enjoy the extra activities like catching goldfish, spinning tops, walking on stilts, making cotton candy or eating some of the special Sumo cuisine a former wrestler who runs a restaurant prepared in a huge pot under a tent.

L managed to win his first match but was pushed out of the ring after many unsuccessful attempts by his opponent to topple him in the second match. He seems to have good balance.

N went to be outfitted with some nylon sumo pants (J and M had the wraparound outfit but times are changing and the pull-on style seems more popular with girls these days) as soon as L's matches were over, but it took a long time for the 3rd graders to finish their qualifying matches so she had lots of time to play. She caught a bunch of goldfish which are now swimming in a bucket on the balcony as the crayfish L caught last spring is housed in our single aquarium. The crayfish might enjoy some sashimi, but I doubt the goldfish would enjoy sharing the same tank.

When the 4th grade girls finally did begin their matches, I got a good spot for taping it and sat to watch. N won her first match and was very pleased. Several of her friends were also participating so she seemed happy just to be their with them all. Her second match was against the running champion from last year, a willowy tall blond girl from the American school. N got in to push the girl out of the ring but the girl pushed her shoulders down and N touched the ground with her hands, losing the match. The other girl went on to become this year's champion again and I expect we'll see her next year and the year after unless her dad gets a new job somewhere else. N says she had fun and wants to go back next year, but I think it may have been the cotton candy as well.

A Little Music

We had a few days of dusty wind and then rain and I felt this way when the bright sky seemed to pour in the windows this morning.

Well into Spring

It's getting downright hot! The train to the Cancer Center runs in sort of a loop so I took the train in the longer, clockwise route instead of the usual jam-packed route this morning. It took about 15 minutes longer to reach Tsukijishijo Station, but I had a seat all the way and was able to relax after the crowded train in to Shinjuku. The treatment went well and I made it home in time to fry some noodles for S' lunch before heading off for parent-teacher conferences at the elementary school for L and N.

L and N's teachers tried hard to sandwich the difficult-to-say parts with news like "He/She is the fastest runner in the grade." or "He/She gets along well with the other classmates." L needs to work a little harder on his Chinese characters; he has trouble fitting them in the space provided and balancing the various components. N needs to slow down a little and do things one at a time; her work gets a little careless in her effort to finish first all the time.

J and M's school has returned to a three trimester system so we'll get report cards at the end of July and there won't be parent-teacher conferences until December, if then. Their school seems to cutting back on a number of things to get in enough hours of required classes. M is enjoying track and field and I'm the "parent supporter" in charge of relaying various club info to the other 7th grade moms. Fortunately, I can e-mail most of the messages on my cell phone of by computer.

We're gearing up for the annual Kiddy Sumo on the 20th, the elementary school sports day on the 26th and the junior high school sports day on June 2nd. That's a lot of rice balls...

Golden Week

The calendar shows a three day weekend at the end of April and a four day weekend from May 3rd. We've closed our language school for the week even though the kids still have school for two days this week.

M's U.S. passport has just expired so we need to take her downtown during embassy business hours (the embassy has both U.S. and Japanese holidays so they're only open Tue. and Wed. this week) to apply for a new one pronto. So much for a perfect attendance record at jr. high, she has to be present when we submit the application, as do both parents as she is under 14 years old and the passport agency is trying to avoid international abduction issues. If only one parent can go, an expensive notarized letter with reason for absence and notarized permission to apply for a passport for the minor is necessary. The nearest U.S. style notary is AT THE EMBASSY...Japanese facsimiles of notaries charge about a hundred dollars for each signature.

Actually, J and L's passports have also expired but N's is valid until the summer of 2008. With no immediate travel plans, I think we can wait until summer vacation so we won't have to keep them out of school for a day to apply in person. I think that the embassy notary can notarize the necessary forms free of charge so S won't have to go all the way downtown again. J will be 14 by then and no longer need permission from either parent (Yeah, sure...J: Arrivederci! I don't need you old folks, I'm off to see the world.) I'm glad that we managed to talk S into a trip downtown anyway.

With treatment on Tuesday and the embassy on Wednesday, I'm getting out and around a lot these days. Hopefully we can go do the pool with the slides that everybody likes or cycle over to Nogawa park with a basket full of rice balls wrapped in seaweed on Thursday or Friday so the kids can say they actually went somewhere or did something during Golden Week.

Tokyo Tuesdays

I think I'm getting used to this weekly routine now. I manage to find the right part of the train where I'm likely to get a seat in the morning rush, make the transfer to the downtown subway smoothly and not forget to get off the train at the station near the National Cancer Center (only forgot twice, suddenly remembering "Hey! That was my stop!" just as the train doors close and the train pulls out). That seems to be the worst part of my Herceptin treatments.

The treatments themselves are pretty simple; hand my file to the chemo station staff, take the escalator back down to the reception lobby where I can pay my bill in advance at the accounting counter which is not yet busy in the morning, get a bottle of green tea, return to the chemo room to be assigned a chair, get set up for the IV and sit for an hour and a half in a nice reclining chair sleeping or reading while the drug and a saline solution chaser drip. As soon as I'm done, I can go right out the door and get the train home instead of waiting for 20 or 30 minutes at the busy accounting counter to pay my bill.

The subway and train home are not at all crowded so I can sit and finish my book. It takes about an hour one way and I'm usually home for a late lunch and a short nap before the kids come home from school.

X-Ray Results

Well, the good news is that the ugly spots in my lungs are no larger than they were 6 weeks ago (the largest of the five I could see in the x-ray is about 6cm long and 2 cm wide) and may be a little smaller even. Also, I remain symptom free unless anyone looks at me with X-ray vision and sees the blobs. It isn't as encouraging as I'd hope it would be but women in a Herceptin support group said that basically this is what to expect. Their mets shrank with additions of other chemotherapy drugs to the Herceptin.

As I am not lacking oxygen or getting palpitations, I'll wait until after May's CT scan before possibly starting with more chemo with my Herceptin. I'm glad that the Herceptin has stopped the advance of the cancer in its tracks and will continue with treatments to keep it that way.

I used my postal account for today's treatments and was comforted to see that more friends have contributed to my treatments. I really appreciate everyone's generous support through messages and contributions.

Today's treatment went well and I got home earlier than expected so here I am on the computer.

Matriculation

M has been admitted to the local junior high school and will begin her one mile walk there tomorrow morning with a big bag to carry all of her new textbooks home to be labelled with her name. Fortunately, by junior high school, the children can do this themselves and I won't have to write or stick her name on every tiny item she might need at school. The weather cooperated and a neighbor offered to take a family shot of the three of us so here it is:




I finally got over last week's cold and am ready to go tomorrow for an x-ray to see how the Herceptin is working and to get my weekly dose of it. I guess I'd better plan an easy breakfast and lunch for the kids who won't be up when I walk out the door or who will be home for lunch because the junior high doesn't begin school lunches until Wednesday.

Celebrating Spring

Back to School

Three out of four returned to school today for a morning. M's entrance ceremony will be on Monday. I have a very nice Anne Klein black pants suit to wear as a lovely woman in the breast cancer survivors yahoo group I joined decided to cheer me up with a box full of nice clothes and even some treats for the kids. M will wear her new school uniform, which is the same as J's but a few sizes smaller. I'm glad that I won't need any anti-nausea medications or a wig for this year's ceremony because Herceptin is not so caustic as the chemo-cocktail I was on a year ago. I'm also glad that I can go at all and am sure to shed a few more tears at how grown-up M and her classmates all look in their clean new uniforms.

Next Tuesday I'll get an x-ray before my fifth treatment to monitor how the regime is working. I'm hoping that it is doing the wonderful things that I've heard it has done. If not...the next step will be to add another drug to the infusion, probably one called Navelbine, and get the hats and wigs out again for a while. I am comforted by the fact that there are options that I may try yet but am still hoping that the easy to deal with (physically anyway) Herceptin is working its magic. I'm also comforted by all the support I've been receiving through my cyber groups, emotional and financial.

Oops, I Missed a Week or So...

M got a new pair of eyeglasses the day before graduation. The red frames stand out a little but she likes them enough to wear them even at graduation so I don't have to worry that she'll try to get by at school squinting at the blackboard. The graduation itself was pretty much the same as J's ceremony last year. The kids were all nervous about maintaining formality that they all walked stiffly, without moving their arms when the fifth graders played Pomp and Circumstance for the grand exit.

A few seconds after the final student left the gym, the vice principal asked us to remain in our seats as a boy who had been ill and in the hospital for most of the past year had managed to come to school that day after all and they felt he should receive his diploma from the principal like the rest of his classmates. It took about five minutes to get all the sixth graders back to their seats as one class had actually made it all the way back to their third floor class room. The kids all seemed a little excited by the unexpected and unrehearsed portion of the event.

When everyone was assembled again, the principal had the boy's teacher call the boy's name and the boy climbed the steps to formally receive his diploma. The fifth graders weren't sure whether Pomp and Circumstance would be necessary again but the principal signalled to the music teacher that she should play something on the piano, much to their relief. She broke into the Alma Mater and the fifth and sixth graders all jumped right in spontaneously, singing the lyrics while the relaxed and smiling sixth graders casually jogged back out of the gym again with their classmate. Not a dry eye in the gym...

We had to hang around for the final class photo and then form two lines outside for the new graduates to walk through and receive flowers. M's teacher, Mr. Ono, was N's first and second grade teacher and this is his first year to have a sixth grade class. Halfway down the recessional line some of the teachers grabbed him and tossed him up in the air like a baseball star to celebrate his first class to graduate. After congratulating and being congratulated we returned home for buckwheat noodles for lunch. S took my afternoon class so I could attend the post graduation bowling and curry rice party with M.

Lots of Calories

M turned 12 today. She played with some friends in the park where the cherry trees are in full bloom and they all came up for birthday banana cream pie. The Joy of Cooking wasn't very specific about how much I should continue stirring over not in boiling water so the custard wasn't as firm as it could have been, but the friends were all duly impressed. They didn't know that pies and custard could be in one dessert and that either could be made at home. J performed "Happy Birthday" on the beaten up saxophone that a neighbor gave us and N followed a nice rendition of the first part of "Puff the Magic Dragon" on the recorder (melody) and xylophone (harmony and percussion) simultaneously. She can only play until the first low note though as she only uses one hand.

Last Week of School

This week's Herceptin went well. As it isn't one of those drugs that reduces white blood cells or causes nausea, I didn't need a pre-treatment blood test or steroid IV so I was finished and on my way before lunch time on Friday. I asked about a better day than Fridays as we have upcoming graduation, birthday and other important days on the next few Fridays so now I'll be on a Tuesday schedule and don't have to go until the 27th.

M's graduation is next Friday. S will take my afternoon class so I can go with M to the post grad bowling extravaganza. Then it will officially be spring break, although the children will all have only half days this week and a holiday on Wednesday so we're already on the three meals a day schedule. Fortunately it's still cold enough to have cook-in-a-pot-at-the-table fish and vegetable nabe (sort of like bouillabaisse).

So far so good

After all the necessary pre-treatment tests on Friday morning, my doctor finally called me in for a consultation and explained that the results showed that it would be fine to begin Herceptin and that I could begin that very day if I wanted. Before he signed the release he explained the procedure, possible complications and side effects again and reiterated that there have been some cases where patients with lung metastases have had severe and even fatal reactions and that I should be prepared to spend the weekend if the hospital if I showed any signs of breathing distress. After I mentally confirmed the state of my underpants (newish, no holes...), I assured him that I was ready to accept this possibility and we both signed the release to get the treatment going.

The chemo center was a little busy so I reserved a reclining chair and went upstairs for a cheap and light soup and salad lunch with fresh bread and a nice view from the 19th floor of the hospital before heading to the hospital cashier to pay in advance for my treatment. The hospital computer had my bill ready a few minutes after I had checked in to the chemo center, before I'd even started treatment, so I thought I'd save a little time and take care of the bill first.

When I returned to the chemo center, I only had a 5 minute wait for my chair and treatment began. They had a little trouble searching for convenient veins because my veins know about IVs and have all gone into hiding. If this treatment shows the success I'm hoping for, perhaps a portocath might be an option to discuss with the oncologist.

The Dom Perignon dripped for an hour and was chased by a small bag of saline solution and I had no side effects or reactions whatsoever. I finished in a little over an hour and was given the AOK to head home and to my afternoon class. It was a big relief to know that my body can tolerate this drug. I hope that it is as tough on the cancer as it is gentle on the system.

Down to the last 12 hours

This morning was the elementary school "Farewell Sixth Graders" event and the sixth grade moms were invited to observe the entire school saying good-bye and good luck to the children who will graduate in two weeks. L's grade played a song called "Sanpo" from the movie "My Neighbor Totoro" and N's grade played and sang their own original version of "Puff the Magic Dragon" very well. All the moms, myself included, had a good cry and the sixth graders returned all the musical greetings with a performance of part of the Dvorak's "New World Symphony" on recorders, pianicas, a piano, a few xylophones, a big drum and some tympanies. I may have missed a few instruments, but the performance was dynamic and impressive for a group of 11 and 12 year olds.

Tomorrow is the first day of my new cancer treatment regime. I'm waking up the kids a little early tomorrow so I can make sure they actually get up and eat breakfast before I leave for my early a.m. appointment. S will make sure they get out the door for school in time.

I did a few days worth of grocery shopping this morning and had the store deliver it all as it was too much for my bicycle and delivery is free. Now I don't have to worry about hungry children for a while.

I am very glad for the outpouring of support from friends and family that has made it possible for me to jump right in and blast away at this cancer.

Overwhelmed

I checked all the options at city hall and didn't have very encouraging results. Our income from 2005 was a tad over the limit that would permit me to take a break from the National Pension plan payments so I can't re-route that money. Also, I'm still too well to get any disability payments from the plan, but this is good news, survival-wise. The clerk who sat down with me (after donning a white surgical mask) to explore all the options that might become available, depending on how the National Tax Agency likes our returns this year, was pleasant and encouraged me to come back in July to try to apply for exemption from payments for a while.

The next desk, at the same counter, was the National Health Insurance clerk. There is a safety net for people with high medical costs. If our 30 percent of the bill for medical treatment for a single person within a calender month at a single institution exceeds 80,000 yen, the excess is reimbursed to us a few months later by city hall. There is a service where city hall pays the amounts in excess of 80,000 yen directly to my hospital instead of me paying it all and waiting for a refund, as this would make it easier in the beginning. This is unavailable though to us just yet so I'll have to keep trying along the way.

The clerk was sincere in his efforts to assist me and a nice enough guy that I almost look forward to taking my refund postcard there every month. Take a deep breath and retreat. OK, nothing has changed, I just have an 80,000 yen per month hobby.

Some friends in an online group have generously offered to help in a variety of ways and I have decided that if there was ever a time to learn to accept help, this is it. The messages I've been receiving from my friends and family have been very encouraging and I have much hope for this treatment. The generosity and encouragement have been pleasantly overwhelming, inspiring and much appreciated.

A Day Later

At Friday's visit, my oncologist showed me that the spots in my lungs had tripled in size since November and told me he wants me to stop the Tamoxifen and Zoladex and get ready to start Herceptin. He went on to assure me that he'd found a clinical trial I could participate in where half the patients are given Herceptin alone and the other half Herceptin plus Taxotere. I asked if the eight doses of Docetaxel I had last year didn't disqualify me and one of the extra oncologists he'd asked to sit in on our consultation chirped in that it did while he shuffled through my file and disappointingly agreed. He was quick to recover and emphasize that I could and should start Herceptin as soon as possible anyway and continue weekly infusions for as long as it continues to shrink and control the lung mets without damaging my heart. He explained how it works and mentioned that although he wants me to start Herceptin alone, I may need another chemo drug called Navelbine or other chemo options combined with it in the future and that there are all sorts of chemo options yet to sample when any one stops working. Another drug called Tykerb or Lapatinib is also about to be approved in the U.S. (this month) and will have some further trials for which I might qualify.

I'll get another heart ultrasound, an EKG, an x-ray and some bloodwork before next Friday's consultation and possible begin Herceptin that day or the next Tuesday, depending on the results. The first infusion apparently causes the biggest reaction, almost an allergic reaction, with most patients experiencing chills and hot flashes alternately but the subsequent treatments apparently do not. The biggest reaction will be to the family finances though and I'm checking all the available public resources to see if we'll qualify for a little (hopefully a lot of) help. Cyberfriends in various support groups have offered much assistance with information and suggestions.

I took advantage of my location and enjoyed an inexpensive sushi lunch near the fish market. The cute sushi chef seemed curious that I didn't fit the pattern of the foreign tourists that he sees in groups every day so he asked if I was a regular visitor to Tsukiji and I admitted that I was visiting the Cancer Center regularly. He asked if I liked OOTORO, the expensive belly portion of the tuna. When I said yes, he made a nice serving of it as a special treat for me. Nice guy.

I sampled goods on my way back from the market to the subway station and got a few bargains on vegetables, stewed walnuts and shrimp (S's beer snack) and yummy sushi eggs for today's Doll Festival salad sushi. The beer snack vendor even threw in a small bag of sweet black beans which I'd sampled and decided were good, but not good enough to buy the huge bag on display. If I'd seen the smaller bag, I'd probably have asked the price and purchased it, so I was glad for the freebie.

Today was the local Daruma Ichi, a festival with about 250 stalls selling all sorts of foods and trinkets in addition to daruma dolls near a big temple. J asked me to make her a lunch to take because the food stalls aren't all that cheap and she wanted to go with her friends. I made a fried noodle lunch for M too as her friends stopped by to see if she could play today and the weather was so nice that I didn't think she'd want to come home and waste an hour for lunch. Then I got the weekend grocery shopping done and took N and L on the bus to the festival. We met J and her friend who had finished exploring the temple and were desperately looking for the key to the friend's bicycle with no success. I lent her my phone and she managed to explain to her grandmother at home where the spare was and ask her to have her brother bring it to her by bus on his way to the festival.

Resolving that situation left us free to do our own wandering through the stalls of brightly painted daruma dolls of all sizes and the commotion of vendors hawking their wares. Of course it was a perfect situation to lose a kid or two, so I gave N & L instructions on where to meet if they got tired of wandering through the throngs. L soon went on his merry way and the instructions proved useful. We walked the mile and a half home enjoying the plum blossoms in gardens along the way instead of attempting to get on the crowded buses.

N helped me make our fishmarket egg and salmon sushi salad dinner to celebrate the Hina Matsuri doll's day which was today. She and L also filled and pressed 40 pumpkin gyoza together for me to fry. Now, happily full, we have to clean up a bit to make room to go to bed.

The Phone Rings

so I answer it, still wearing the soft white gloves I had on to handle the Doll Festival dolls and ornaments (I waited until so late so the dolls wouldn't get mauled too much before March 3rd, the Hina Matsuri Doll Festival Day). The dinky music box picture frame commemorating the event with a traditional song is tinking loudly away a little too fast because an energetic 9 year old has wound it up a little too much.

A woman's voice said "National Cancer Center, hold please...go ahead." and my oncologist came on the line. I went last Thursday for a CT scan and was expecting to see and discuss the results on March 9 at my regular monthly appointment. Dr. Fujiwara told me that the results arrived on his desk this afternoon and that the spots on my lungs have grown (in spite of depriving them of estrogen and tricking them with Tamoxifen) and that he felt I should see him sooner than next week to talk about the next strategy; Herceptin. I'll go tomorrow morning to see what plans can be made. He said that I should discontinue the daily Tamoxifen pills in order to prepare for a new regime. He mentioned that he hoped to get me into a clinical trial with Herceptin to help keep the costs down. I thanked him for calling and put the phone on its cradle just as the Doll Festival music wound down.

The results aren't so great, but at least I don't have to wonder how they were until next Friday and I can stop taking my morning pills so maybe some of these hot flashes will stop.

Where Did This Month Go?

My super survivor friend downstairs had a four day weekend in the hospital because her her regular physician who visits her weekly decided that her cold had gone on long enough and that she might not last much longer with her breathing difficulties. She was rushed off in an ambulance with her dinner still in the microwave and a pot of stewed fish and daikon radish on the stove. I visited her on Sunday and she had already bounced back from the brink to her usual vibrant self and was concerned about how bad her apartment might smell upon return, whenever that might be. She asked me to clean out her refrigerator, wash up a little, water her plants, air out her futons and bring her some more pajamas and a bathrobe. I told her that I'd be glad to do these things but that it would be Tuesday afternoon before I could deliver the pajamas and robe as the visiting hours at her hospital are very strict and I couldn't make it the next day. This was fine with her and she seemed quite cheered up by my visit. I had J with me as we were on our way to an interview test in northwestern Tokyo.

Monday morning I managed to get all of my neighbor's trash out before the garbage truck came. The refrigerator got a very thourough cleaning as there were quite a few artifacts from last century inhabiting the inner regions. I think that the refrigerator must be a 1997 model, as that was the earliest expiration date I discovered in the very back of the top shelf...

My friend called last night to ask if I'd come pick her up today as she'd been given the OK to check out. She said she didn't need the extra PJs or robe after all. I warned her that her refrigerator was a brightly lit cavern because I'd gone a little overboard on the cleaning and let her know that I'd go out and stock up on any food she felt she could eat. She laughed and said that she'd been needing some help cleaning it out and was glad for the space. I hope she isn't too shocked.

My kind and patient British friend in the neighborhood has offered to drive me there and help out so we're off to the hospital this morning.

Three Day Weekend

Not much happening now but I expect that we'll have a busy few weeks before M's graduation from elementary school. Her class is planning to surprise the teacher with a few songs at a post graduation celebration and a schedule for practising a few evenings before then just arrived by fax.

Wednesday is open house at the elementary school and the kids will have a jump rope exhibition. N came home yesterday and complained that her jump rope wasn't strong enough, showing me that it had snapped in half. When I questioned her further, she confessed to accidentally landing on it while jumping rope on a unicycle after school. Somehow I think that this is NOT part of the exhibition...The biggest problem with the snapped jump rope is that it was M's, not N's, to begin with. Tomorrow I shop for a new jump rope for M.

Not So Bad on a Sunday Morning

S suggested I try out the gym today to see if it was less crowded. I managed to time things right and finish my workout just as the aerobics class began so there were only 3 of us in the ladies' locker room. The bath and sauna work both working so I relaxed almost as long as I worked out. S and the kids were just beginning to fry some noodles on the hot plate at the table when I arrived home. Tomorrow I try the pool.

The Gym

S has encouraged me to join the gym he has been using since last spring. He said that the bath and sauna alone are relaxing and worth the membership fees and that I could use the pool mornings when the kids are in school. To get the most out of my membership, I went with him on the first of this month to sign up and get started.

There are a few gyms in the neighborhood, one is actually quite luxurious with flashy new facilities, lots of aerobikes, walking and jogging machines, step machines and 5 or 6 of every type of weight machine as well as all sorts of lessons in aerobics, yoga, kick boxing, swimming, water aerobics etc. available. I went there as a visitor with a friend from the neighborhood last spring and had a yoga class with about 50 other perspective members and their member friends. Another is a little older but has similar facilities and about half the classes.

The club S felt was the best bargain for our purposes is the oldest in the area. It attracts the less cosmopolitan clients. It has a 25 meter pool and a small machine studio with one of every machine, 5 stationary bikes, 3 walking machines, 1 jogging machine and a small mirrored area where classes of up to 10 can do aerobics (if they have full membership). I have a "training" membership which lets me use the facilities but requires 1,000 yen extra for every lesson I decide to take. There are only one or two classes a day.

S showed me how to use some of the machines and then rested while I worked out a while as he didn't want to overstress his neck just yet. Then we headed off to our respective locker rooms to relax in the sauna and use the big Japanese style baths and showers. He enjoyed his time in the men's bath, happily thinking of how he had generously provided me with a nice way to relax.

In the meantime, I was bustled about by a large group of women who had just finished their morning water aerobics in the pool and were heartily sudsing up and spraying their soap all over the place, having loud conversations over the jacuzzi jets about how the sauna was broken yet again and shoving around to make room in the big bathtub for their friends. I ended up showering quickly (without covering the rest of the bathers with my shampoo, I know proper communal bathiquette) and getting dressed to go out and wait for S.

He was surprised to hear about the crowd as the men's room is only busy in the evening. We've figured out that lunchtime might be the best time to go as the morning class ladies will have finished by then. I went yesterday to try this theory out only to find one woman paddling around horizontally in an undignified manner in a quarter of the usual amount of hot water as the tub wouldn't fill any farther due to some problem with the boiler. She shouted out happily to all who entered (not as many as the previous morning, as suspected) that as the sauna was still broken and the bath wasn't filling up, this was the only way to get warm after her morning swim. Great, a foot bath...The showers are powerful and hot anyway.

Today I took the kids to the local shrine's annual bean throwing event so I don't know how the gym is on Saturdays. There is a supermarket on the first floor of the gym so I can do the daily shopping on my way home from working out. I was glad that S was so encouraging about getting started as my 2 or 3 long walks a week don't seem to be enough to keep (more like "get") in shape and I won't be able slack off if he's there too. I think that he uses the bath and sauna more than the gym when he goes though...

Good News

The results on possible genetic blood disorders have come back and the news is good. I don't have the "faulty" gene that messes up my blood clotting abilities (or rather ability to stop clotting at the right point) or any other conditions that increase susceptibility to clotting and the blood clots are most likely from the Tamoxifen after all. This means I don't need Coumadin just yet and pressure stockings, walking and a little bit of daily aspirin should do the trick.

It was so uplifting to be told that I don't have an inherited condition
that I might just become a hypochondriac and go get tested for all
sorts of things so I can hear that I don't have them. Let's see, I know I don't have an under active thyroid, I'm not pregnant with quadruplets (even if I look like I might be...) I don't have plantar warts, my liver is healthy, my cholesterol is low(per to monthly blood tests)...there is all sorts of good news.


Today we take M to the junior high school for uniform fitting and purchasing a couple hundred dollars worth of gym suits and authorized school shoes. J's uniform already seems a little small even though we bought it "large enough to grow into" last year so we'll probably be a little more generous on the growth predictions this time around.

I had my 2nd Zoladex injection on Wednesday and got results from last week's ultrasound of the veins below my heart down to my ankles. I'd had a blood clot in my left calf two years ago when I was on Tamoxifen and now that my onco. wants to combine the previously ineffective Tamoxifen with monthly Zoladex, he wanted to monitor how the veins are handling it. It turns out that what I had thought to be sore muscles from ice skating around and around and around counterclockwise in the indoor skating rink was actually a 5cm clot in my right calf.

The soreness went away, but the clot was still visible by ultrasound last week. Knowing of my concern regarding Factor 5 Leiden (a genetic blood disorder), my onco. thought he should send me to the top hematologist in Japan for testing before prescribing warfarin etc. This means a trip with a letter of introduction to another hospital (Keio) between the cancer center and my home. I went right away, that same day, to be turned away at the reception desk for arriving 5 minutes after the 11 a.m. deadline for outpatient service.

I did learn that the "top specialist" would be on duty next Tuesday, so I'll try again then. Here's hoping that he won't need me to stay overnight for Heparin and observation....I'm wondering if taking an aspirin a day might be enough, but I guess this is something that I should let the experts look at as I really don't want a dislodged clot reaking havoc when it reaches my lungs and heart.

In my rush to get to the new hospital, I forgot to stop by the pharmacy near the Cancer Center and pick up my prescription so I had to go to 6 pharmacies near my home this morning to find one that carried the specific brand (not Nolvadex but a cheaper equivalent, which the pharmacies and doctors don't like to offer because their commissions are lower and they feel loyal to the drug companies for some reason) my doctor prescribed. What a pain in the...but good excercise, cycling around the city.

It was fun terrorizing all of these places just by walking in the door. They see blue eyes and immediately start pushing at each other to see who should attempt to help the foreigner, like penguins pushing to see which bird will jump into the freezing water first. Then two or three of the pharmacists will approach the counter together to help each other if I should suddenly say something in English. When I greet them in Japanese and explain what I need, the extras all bow and retreat to continue whatever they were up to before I graced their establishment. The next Zoladex shot will be on Feb-13, when the four hard core survivors have their elegant ladies lunch, to which I've been invited as a fifth member. Then I get a CT scan w/contrast on Feb-22 and discuss the results of that in early March to see if the Zoladex and Tamoxifen are working or if I should start Herceptin (if I can figure out how to afford it without taking food out of my children's mouths...) I really hope that the Zoladex and Tamoxifen are working for now so I don't have to make any big decisions just yet.

Anyway, I feel fine and am glad that things are calming down at home now that DH is recovering from his surgery and the kids are back in school after New Year's vacation.

City Jr. High School Art Exhibit

J forgot to show us (or even look at it herself) the newsletter from school with the names of the students whose art had been selected to be displayed at the civic center art show this year. A lady in the supermarket alerted us to the fact that J's art was on exhibit over the weekend, until today, with works for some of her good friends and upperclassmen. Good going J!

Sorry my photography leaves so much to be desired. The first few shots showed only white paper because of the flash. As I am generally very technically challenged, I had trouble figuring out how to set the camera onto manual and leaving the flash off. I finally just manually covered the flash with my fingers and tried to take the shot.

The art project was to draw a picture drawing only ink dots on white paper.

Fun On Ice

N and L enjoyed skating so much last month that we had to go again last week. L even wrote an essay about it for his homework. They're all asking when we can go again already. It's only about $15 per child, including round trip train fare, admission and skate rental (a few dollars more for adults).

2007 New Year's Day Breakfast

We only made a few of the traditional New Year's dishes for this year. The student who helped us with S's classes in December came over with his sister to help us cook and take a little home with them so we wouldn't have too much. We also had hot soup with "mochi" glutinous rice dumplings. I shared some of our black beans and mashed and strained satsuma-chestnut stuff with the 76 year old woman from the 3rd floor. She was happy to have a few traditional things to eat on New Year's morning.

Happy New Year

Just a quick post to say that S continues to recover and we're all well. We've been busy with the usual New Year's traditions and even had some help from the student who took S's classes last week when we cooked the New Year's dishes. He brought his sister along and we managed to cook most of the special dishes in a single day. We've been ice skating again and plans are to go swimming on Sunday. J will go to an Escher exhibit with a friend in downtown Tokyo tomorrow. School starts on Tuesday after the final holiday of the New Year, Coming of Age Day, on Monday.

Homecoming

S has been a good patient and the nurses have shown me how to help him into his neck brace. The stitches come out on Friday. Saturday morning I get a crash course in how to wash his hair around the brace and then they say he can come home if he promises to stay in his futon for a week or two. He's considering using a taxi instead of his original plan to get one train to Shinjuku, walk through one of the world's busiest stations to catch another train out to our station. I'm grateful that the doctor, nurses and our friends who have visited him have encouraged him along this line.

S is Stable

I went with S yesterday with my lists of questions which the surgeon seemed pleased to be asked and then we listened to all the other nurses and personnel explain their jobs and what to expect for S's surgery today. I was able to get the kids off to school, run a few errands, go to my old oncologist to demand (for the 3rd time) that cell samples from my tumor from two years ago be sent to the National Cancer Center before going to S's hospital downtown and waiting for the morning surgery to be finished. I turned out that the samples had been sent the very day of my appointment earlier this week so I'll take the package of blank glass slides back to the NCC when I go in January. I managed to arrive at S's hospital before the surgery was finished.

The surgeon leaned out the consultation room and called my name around 11:45 so I went on in to find that he had entered from the sterile operating theater side of the room, leaving his sterile shoes behind the heavy door where they wouldn't pick up consultation room germs or so I assume. I had to smile at the effect, a bare foot surgeon in his green cap and scrubs confirming that the surgery went well and that 4 of S's vertebrae had been "improved" with titanium spacers and screws. A search for laminoplasty revealed many illustrations of the procedure.

The doctor was all smiles and happy to comfort me that I'd be able to see and accompany my dearest husband as they wheeled him by in his bed back to his 6 person room in a few moments. S was fairly groggy and in a little pain, as expected, but seemed to relax about half an hour after the morphine drip finished.

I stayed most of the afternoon as my former host mother was home with the kids (Thank you K.Y. san) and I wanted to make sure he was breathing OK after they took him off the oxygen later in the afternoon. Feet and hands are all in working order so there was no nerve damage from the surgery. He was disappointed that the feeling in his hands (the reason he was so concerned about getting surgery in the first place) didn't return immediately after the surgery. I have trouble believing he really thought that the compressed nerves would bounce back to tip-top shape within minutes of surgery. :-) I expect that he'll always remain a little numb, but less so than before and that the numbing will not progress now that he's had the surgery.

It'll be Tuesday before he can get out of bed and go to the bathroom and I think being immobile may be almost as hard on him as surgery. I'm relieved things went well but the image of the barefoot 50 something surgeon on the clean white floor outside the operating theater will remain in my brain as one of those "Japan Moments

200th Post!

According to blogger dot com, this is my 200th post.

S came back from his consultati