Busy and Long Day

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

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

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

Run Run Run

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

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

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

Here's hoping the week goes well for all.

Looking Good

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

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

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

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

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

Sqeezably Good Looking

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

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

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

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

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

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

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

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

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

A Pilgrimage (of sorts) and my Birthday Week Celebration

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good News

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

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

Future Plans

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

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

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

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

Almost Time for the Kotatsu

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

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

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

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

The Talk and a really strange toilet experience...

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

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

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

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

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

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

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

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

2. Get over this grief!

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

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

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

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

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

It's been a while

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

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

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

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

Exercise

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

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

New Regime Again

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

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

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

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

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

Tiptoe the Chinese Hamster Posts on Her Trip

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


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

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

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



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

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

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

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

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

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

Life Goes On

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

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

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

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

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

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

RePORT

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

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

More details when I have a real keyboard.

Hmmmmm and Wow!

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

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

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

A Nine Year Old

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

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

I sure showed 'em!

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

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

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

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

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

Shave and a Haircut Five Cents

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

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

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

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

Cyborg

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

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

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

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