Mikan Days

Fortunate with Neighbors

2010-04-29T15:21:00.002+09:00

I've been lazing around home without much energy lately and shocking door to door salesmen with my shiny head (I should leave a hat in the entryway.) One of the track team moms has been bringing by scrumptious things for dinner on Wednesdays which has really helped me through the week. Yesterday, the doorbell rang and, assuming it was the the track team mom, I opened the wide to find another neighbor bearing food. She says she doesn't read English but she'd noticed there hadn't been any blog updates since February so here I am, before my afternoon nap, actually using the laptop.

Of course I'll have to rest up a little more before I can write my daughter has gone to attend high school in the U.S. and is having the time of her life so far and all about the house visit doctors and nurse I've signed up for. Negotiations with the various divisions in city hall have been made so the if and when I need care, I can get it right away. In the meantime, time for a snooze.

Thankful

2010-02-24T16:23:00.002+09:00

I and some other "international types" spoke the fourth grade about elementary schools in other countries on January 29th and I was glad to answer questions from L's classmates. He seemed happy to have me the too. It was a bit of an effort to speak because of lingering effects of last fall's brain surgery and gamma surgery, or so I thought. It turns out there was more in my head than I thought.

That night I woke up to two paramedics kneeling on my futon explaining that I'd had a convulsion and my daughter had called them because she could wake me up. I had my insurance cards and cancer center information in my bag next to my pillow so I quickly grabbed a change of clothes and went down with them to the stretcher/dolly waiting in the lobby. They insisted I should ride and pushed me up the slope out of our building to the waiting ambulance. M, who had called the ambulance, rode with me. At 3:30 in the morning, it only took 30 minutes to reach to cancer center downtown where I was examined and given a bed. There were no more incidents that morning and I gave M money to take the train home, assuring her that I was in good hands and telling which food should be eaten first from the fridge.

The regular staff gave me an MRI first thing Monday morning and sent me back to relax in my room. Results from MRIs usually take a while. I was surprised to be called to radiology the same morning and assumed it was a follow up on the pelvis radiation I'd had last fall. When I went in, the image on the screen was not a hip but a brain, and it looked quite festive with tumors lit up here and there. The Awaji Island Awaodori dance music and images came to mind as I sat down next to the screen. Here's a YouTube image http://www.youtube.com/watch?v=Uve3jpd4flg&feature=related

The radiologist figured out that I hadn't heard the diagnosis when I commented on how busy it looked in there. We talked about treatment and, as I'd expected, whole brain radiation was the next step. I'd stay in the hospital and have 10 treatments. As soon as I returned to my room upstairs, the neurosurgeon came in to apologize for not explaining before I heard about the treatment. We looked over the MRI images and counted 12 tumors. December scans were all clear so this was rather sudden.

Anyway, my good friends stepped in to bring food to my children and kind people offered to help me home from the hospital. Friends stopped by the hospital and brought treats to cheer me up after the healthy grilled fish, rice and vegetable menu. People generously donated cash so I was able to pay the bill and I'm thankfully home and looking forward to two graduations and two entrance ceremonies with spring break in between. I am so grateful for the support that helped me though this tough two week and continues to encourage me in the battle.

Time to break out the scarves, hats and wigs again.

Traditions

2009-12-27T15:26:00.002+09:00

With school and other busy things happening on the 24th and 25th, it didn't feel much like Christmas. Santa knew that I had an early hospital appointment on Christmas Day so he did a fly-by and deposited a few presents for the children on the balcony while they were watching TV in another room on Christmas Eve. I hope the neighbors weren't troubled by the crescendo and decrescendo of sleigh bells punctuated by a thump on the balcony in between. The girls got clothes and L got some batting gloves. We were lucky enough to score a hand-me-down uniform. A diminutive classmate of N's has graduated the little league and his mom called to ask to come over so she could give us the entire summer and winter set and an aluminim bat to boot. Everything was just the right size and it was in great condition so L was quite happy.

J and her brass ensemble have been practicing for a competition, so she's been busy all week and will begin her New Year's break tomorrow. The other 3 children started their break on the 26th. We'll have some friends over for a turkey dinner tomorrow.
Then N will have the pins in her arm removed and get a new cast the next day. Always busy, never dull.

Belated Photo Update

2009-11-18T20:37:00.001+09:00

Gamma Completed

2009-11-18T18:00:00.002+09:00

The iffy area in the cavity in my brain from last April's surgical resection turned out to be tumor action so I spent 92 more minutes on the Leksell Gamma Knife table at the Tokyo Women's' Medical Univ. Hospital to blast away with rays of Cobalt and clear the cancer again. As long as we find and recurrences when they're small enough, I can keep zapping away when necessary. This time, I had the procedure on an outpatient basis and a good friend gave me a ride home. I was home before the kids got home from school; an easy day, actually.

My son is hoping to join the little league so I went to practice on Sunday to get more information and scope out the possibility of getting a hand-me-down uniform. It looks like I'll have to call around a bit yet. There's a contract I have to sign, promising to participate in the roster of parent volunteers at practices and sell hot dogs or noodles as various festivals held on the elementary school grounds. It also warns that that two parents will be needed on the committee that controls the use of the school grounds and someone to handle collecting the $20 per month dues for each child will be chosen from the contract signers. It looks like the older kids ride their bikes to practice at the riverside field and the school grounds aren't used much...I guess I'd better look for a bike for L too now...He did come home from his trial day quite satisfied with his experience. He said that only the captain was faster than he was and that the coaches were nice.

M is getting ready to sign up for exams to enter high school. We've spoken to her junior high teacher who is in charge of guidance for his whole class (he's not very encouraging...), and we're off to visit the school she wants to attend for an open house on Saturday. Then we'll rush home so she can study for final exams at her junior high. These exams will affect her chances as they are a very large part of her grade and the grade is used in conjunction with entrance exam results in February. I hate the pressure these kids get from their schools about this all right when they're a mess of teenage hormones. She seems to be doing OK so far. She's finished the hard part; choosing a school in the first place.

Public or private, high school is not mandatory so tuition is required. Of course public schools are inexpensive but we can only try for one as the exams are usually on the same day, while the private schools have various schedules. There are hundreds of public schools, some really academic, some remedial types, some vocational etc. J's school is a super academic type. M is more interested in practical studies with a hint of academic topics so she chose a business communications high school. As N will graduate from elementary school and go to junior high in spring, I'll have four kids and four schools from April. I may need a manager so I get to all the class meetings and school events.

In the meantime, this month marks five years of post diagnosis breast cancer survival and I'm turning 45 so a week of celebration and Thanksgiving with family and friends is in order. We may see our niece from Kyushu who will visit her brother and his family this weekend as well. Before I get too busy, I think I'll take a walk to see some foliage tomorrow. The temple area near the Tokyo Metropolitan Botanical Gardens is usually stunning right about now.

Detours

2009-11-07T09:17:00.002+09:00

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

2009-10-14T11:19:00.003+09:00

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

2009-10-14T10:08:00.005+09:00

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

2009-10-14T09:46:00.002+09:00

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

2009-09-02T16:39:00.002+09:00

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

2009-08-15T00:39:00.003+09:00

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

2009-07-22T18:01:00.004+09:00

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

2009-07-17T15:26:00.003+09:00

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

2009-07-07T08:37:00.002+09:00

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

2009-06-28T20:39:00.002+09:00

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

2009-06-28T19:53:00.003+09:00

Here are some pictures of our Mothers' Day Hike

2009-05-16T16:33:00.004+09:00

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

2009-05-02T21:35:00.004+09:00

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

2009-04-15T20:06:00.001+09:00

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

2009-04-15T20:06:00.000+09:00

More Kool-Aid

2009-03-31T19:58:00.002+09:00

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

2009-03-24T20:36:00.002+09:00

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

2009-03-23T15:07:00.002+09:00

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!

2009-03-20T16:24:00.003+09:00

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?

2009-03-08T22:59:00.002+09:00

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

2009-03-05T18:30:00.003+09:00

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

2009-02-22T12:57:00.002+09:00

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

2009-02-10T21:59:00.002+09:00

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

2009-01-28T02:29:00.002+09:00

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

2009-01-23T22:01:00.002+09:00

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

2009-01-11T16:42:00.002+09:00

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

2008-12-25T18:41:00.004+09:00

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

2008-12-06T19:38:00.007+09:00

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

2008-11-19T15:32:00.002+09:00

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

2008-11-11T20:05:00.003+09:00

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

2008-11-08T01:09:00.002+09:00

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...

2008-11-04T22:03:00.004+09:00

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

2008-11-02T22:10:00.003+09:00

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

2008-10-02T18:37:00.002+09:00

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

2008-09-12T14:08:00.003+09:00

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

2008-08-26T21:45:00.010+09:00

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

2008-08-17T17:11:00.004+09:00

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

2008-08-12T21:07:00.001+09:00

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!

2008-08-08T13:41:00.003+09:00

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

2008-08-07T22:52:00.003+09:00

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!

2008-07-21T20:26:00.002+09:00

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

2008-07-17T21:24:00.002+09:00

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

2008-07-15T22:01:00.003+09:00

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

2008-07-12T20:47:00.003+09:00

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...

2008-07-05T21:55:00.002+09:00

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

2008-06-24T18:06:00.002+09:00

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

2008-06-17T21:42:00.002+09:00

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

2008-06-05T16:28:00.001+09:00

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

2008-05-29T23:45:00.002+09:00

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

2008-05-22T14:49:00.002+09:00

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

2008-05-15T16:07:00.006+09:00

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

2008-05-11T20:55:00.004+09:00

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

2008-05-05T00:43:00.003+09:00

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

2008-04-25T15:48:00.002+09:00

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

2008-04-16T15:42:00.003+09:00

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

2008-04-13T19:08:00.004+09:00

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

2008-04-08T20:36:00.003+09:00

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

2008-04-05T21:23:00.002+09:00

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

2008-03-18T21:29:00.001+09:00

End of School Year

2008-03-11T19:19:00.004+09:00

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?

2008-02-22T21:29:00.002+09:00

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

2008-02-17T12:21:00.002+09:00

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

2008-02-07T13:08:00.000+09:00

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!

2008-01-20T19:48:00.000+09:00

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!

2008-01-19T06:38:00.000+09:00

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....

2008-01-10T20:44:00.000+09:00

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!

2008-01-05T23:03:00.000+09:00

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

2007-12-19T16:56:00.000+09:00

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?

2007-12-14T13:33:00.001+09:00

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

2007-12-11T21:14:00.000+09:00

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

2007-12-05T09:42:00.001+09:00

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

2007-11-27T19:17:00.000+09:00

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

2007-11-06T21:08:00.000+09:00

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

2007-11-06T20:23:00.000+09:00

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

2007-10-30T17:23:00.000+09:00

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

2007-10-23T21:19:00.000+09:00

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

2007-10-21T19:59:00.001+09:00

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

2007-10-18T22:14:00.000+09:00

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.

2007-10-17T09:36:00.000+09:00

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

2007-10-12T21:42:00.000+09:00

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

2007-10-09T21:26:00.000+09:00

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?

2007-10-08T21:50:00.000+09:00

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!

2007-10-07T20:56:00.000+09:00

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'

2007-10-02T17:20:00.001+09:00

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

2007-10-01T09:05:00.000+09:00

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

2007-09-26T16:17:00.000+09:00

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

2007-09-20T20:35:00.000+09:00

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

2007-09-19T14:31:00.000+09:00

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!

2007-09-12T13:04:00.000+09:00

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

2007-09-10T19:43:00.000+09:00

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

2007-09-06T17:15:00.000+09:00

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

2007-09-01T20:24:00.000+09:00

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

2007-08-30T09:34:00.001+09:00

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

2007-08-26T20:11:00.001+09:00

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

2007-08-24T10:52:00.000+09:00

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.