Fortunate with Neighbors

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

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

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

Gamma Completed

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

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

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

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

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

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

A Little Radiation Before Tykerb

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

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

A few belated photos

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


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

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

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

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

Learning to Touch Type

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

Back to School

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

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

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

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

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

Too Busy To Post

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

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

A Cycle of Sorts

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

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

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

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

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

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

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

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

Round and round it all goes.

Summer Vacation - Almost

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

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

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

Shopping with my fingertips

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

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

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

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

Still, I miss jaunts on my Country Squire.

June has come and almost gone

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

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

Belated Mothers' Day Photos

Here are some pictures of our Mothers' Day Hike

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

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

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

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

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

Quick Update

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

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

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

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

Disoriented in the Orient

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

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

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

Disoriented in the Orient

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

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

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

More Kool-Aid

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

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

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

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

Sigh

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

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

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

Thinking about the trial appointment

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

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

Thank you MIJers!

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

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

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

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

Plan B, or is it C?

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

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

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

Disappointed

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

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

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

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

An Encore

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

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

Too Busy to Post Much

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

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

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

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

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

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

Busy and Long Day

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

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

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

Run Run Run

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

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

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

Here's hoping the week goes well for all.

Looking Good

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

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

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

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

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

Sqeezably Good Looking

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

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

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

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

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

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

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

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

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

A Pilgrimage (of sorts) and my Birthday Week Celebration

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good News

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

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

Future Plans

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

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

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

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

Almost Time for the Kotatsu

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

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

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

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

The Talk and a really strange toilet experience...

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

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

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

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

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

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

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

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

2. Get over this grief!

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

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

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

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

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

It's been a while

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

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

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

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

Exercise

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

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

New Regime Again

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

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

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

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

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

Tiptoe the Chinese Hamster Posts on Her Trip

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


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

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

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



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

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

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

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

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

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