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.
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.
Posted by Kathy on Thursday, December 25, 2008
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!
Posted by Kathy on Saturday, December 06, 2008
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.
Posted by Kathy on Wednesday, November 19, 2008
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.
Posted by Kathy on Tuesday, November 11, 2008
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.
Posted by Kathy on Saturday, November 08, 2008
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?
Posted by Kathy on Tuesday, November 04, 2008
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.
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.
Posted by Kathy on Thursday, October 02, 2008
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.
Posted by Kathy on Friday, September 12, 2008
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.
Posted by Kathy on Tuesday, August 26, 2008
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.
Posted by Kathy on Sunday, August 17, 2008
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.
Posted by Kathy on Tuesday, August 12, 2008
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.
Posted by Kathy on Friday, August 08, 2008
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!"
Posted by Kathy on Thursday, August 07, 2008
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
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).
Posted by Kathy on Monday, July 21, 2008
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
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.
Posted by Kathy on Thursday, July 17, 2008
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.
Posted by Kathy on Tuesday, July 15, 2008
N stayed home with a tummy ache and a slight fever yesterday but had too much energy this morning so I agreed to take her and L to the public pool which opened for the summer on the 10th. I was glad my swimsuit still fits but ended up staying in leafy shade of post-blossom wisteria arbor where the ants kept raining on me as I relaxed in the relatively cool spot with a good view of the pool. J was off at an event at the Metropolitan High School of Science and Technology on the other side of Tokyo with a friend, checking out possibilities for next year as they have to choose and test into a high school next winter. M was at track practice in another city as our city doesn't have a full-spec track and their junior high school doesn't have enough space to run more than 60 yards unless they run in the streets, dodging traffic, around the school. The kids go on weekends and pay a hundred yen to polish their techniques on a real track.
S stayed home with the door locked, so M had to break in when she arrived a few minutes before N, L and I did. She was quite distressed and angry to learn that he was actually home and just not answering the doorbell or opening the door when he heard her crawling through the tiny space that any burglar can use to deprive us of our treasures, if they can find any in this mess, that is.
Tomorrow is the second stage of M's Pre-2nd grade test of English proficiency. Wish her luck on the interview. J gets results back tomorrow afternoon from a recent practice entrance exam at a local study center. I have to go with her and make sure they don't pressure her into joining their summer study sessions as several hundred dollars per subject. The test was free and is a good diagnostic tool for her to find the areas she should be brushing up on over the summer.
Summer vacation starts on Saturday and softball, swimming lessons and other things all start on Tuesday. Looks like I'll be up at 5:30 every morning for a while. I plan to take a lot of siestas this summer.
Posted by Kathy on Saturday, July 12, 2008
I haven't turned on the news to see if the meteorological agency has officially declared Japan's extra season, the Rainy Season, over but it sure feels like it must be. We had thunder and lightening at 5:00 a.m. yesterday and the forcasted rainy day blew away with the wind making me sorry I hadn't worn sunscreen when I went out to do some errands. L is running around in his underpants as it's too hot to wear more and too sticky to sit on our chairs without them. The bathtub is full of cool water for the kids to use as a mini pool when they need to cool down.
I started to fill in my datebook with the various schedules and it made me dizzy with how busy the summer "break" is turning out to be. I plan to do as much as possible in the relatively cooler mornings and then sleep all afternoon every day while the kids go off to and return from all of their activities. Slow life - I have to keep telling myself.
Of course, before the actual summer break begins, I'm rushing off to meet friends who will also be tied to home entertaining and feeding their children or who will be off traveling or visiting family all summer. "Hurry up and relax before we miss the chance and can't see anybody until mid September."
Posted by Kathy on Saturday, July 05, 2008
I had a phone call at 8:43 a.m. to my cell phone as I was paying my bill at the cancer center downtown before my 9:00 a.m. I.V. M hadn't arrived at school. It looks like J went back to bed after her ham and cheese pannini sandwich and loquats or couldn't manage to roll the others out of their futons. I'd taken a later train than usual to make sure that someone got up...S never came out of his room, probably quietly waiting to see how long they'd all sleep before someone realized the time and raised the alarm. What AM I thinking, leaving my babies to fend for themselves while I take the trash out and traipse off for treatment? How selfish and irresponsible I am! I did explain what I thought had happened, confirm that M was not ill and apologize to the teacher; that's all I could do. All of the sandwiches were gone when I got home at 1:oo p.m. but L and N told me that they didn't eat any breakfast. Sigh.
On an upnote, the two ladies who always get their Herceptin I.V.s on Tuesday morning were already in the lobby when I arrived and one of them told me she's dubbed us the Tenteki Trio. Tenteki is the Japanese word for I.V. so I guess an English equivalent might be the Treatment Trio - One for all and all for one! We wrote our hopes and aspirations on colorful strips of paper to hang on the hospital's star festival bamboo branch of hope (tanabata). Mariko-san, the seniour member of the trio, gave me some rolled sushi she'd made and a can of organic carrot juice which she'd frozen to keep the sushi cool. I had she sushi for lunch at home and it was beautiful and delicous.
N is excited about the 5th grade trip to the mountains tomorrow. She'll walk around with a forest ranger and learn about trees and forest management in the afternoon, have dinner and a bath and gaze at stars with her classmates before bedtime. The next day is a trip to a commercial dairy where the kids will enjoy sampling as much ice cream as they can eat after their tour of the plant. They all come home on Friday afternoon. Older sisters M and J will be grateful for the quiet evenings before their final exams on Thursday and Friday but I'll have to think of some diversion for N and L over the weekend for the Monday exams.
I've been trying to figure out when I can see some friends for coffee or lunch before I get busy with everyone coming and going and needing three meals a day during summer break but the weeks until summer are already looking fairly busy. Last chance before fall...
Posted by Kathy on Tuesday, June 24, 2008
With limited space in most Japanese homes, ours included, people tend to store out of season clothes in plastic cases in a storage area or the back of their closets. This involves emptying the dressers and wardrobes and refilling them with the upcoming season's apparel from the plastic cases and then refilling the cases with last season's clothes before trucking the cases back to our storage room in the basement of our apartment building. I procrastinated until the last minute (the week when the schools announce that students may wear their summer uniforms and that they'll need their school issue swimsuits for P.E.) so we're still mid-shift and our place looks like a Salvation Army secondhand shop.
On the way to the National Cancer Center today the students who commute to school stood out more than usual in their lighter colored summer uniforms. I took a local train and was amused to see little girls hesitantly lean out of the doors each time the train stopped so their friends boarding at each station could find them. The students are gradually replaced by sleeping company employees. I still don't know how they manage to sleep while standing up in a crowded train though.
The numbers from my blood work looked OK today and the x-ray I had showed that the lung tumors haven't grown in the past month. My feet were a little swollen from a busy weekend of walking to and from the stadium where M's track meet was held and from irritated toenails, remnants of ten months of almost weekly Taxol. As there appears to be no infection, I didn't ask for antibiotics but Dr. F. did tell me not to hesitate to call and get a prescription if I noticed any pain. The yucky parts are growing out quickly now that I'm off of the Taxol at any rate. A little pink nail polish and I'm all set.
I had my usual Herceptin I.V. , paid my bill and went to get my prescription for the next three weeks of Xeloda filled out. I think that I've gotten used to the drug so I shouldn't be so sleepy this time around. I'll have a CT scan at the end of July to get a closer look at what the Xeloda is or isn't doing and revise my strategy is need be.
I picked up a block of sushi egg tamagoyaki in the Tsukiji street market for the lady on the third floor and headed back to Shinjuku to meet my British friend who'd been shopping there and two other foreign wives. They were just finishing lunch when I arrived but still had plenty of chat left in them to last while I tucked in to my plate of Indian curries, naan and salad. I enjoyed seeing them and having company on the train home.
This evening was my turn to join the junior high school neighborhood patrol so I delivered the tamagoyaki and headed off to school to unlock the patrol box and don an international orange mesh vest with reflective strips and walk around the neighborhood with three other PTA moms for forty minutes. When I returned the vests after our uneventful tour of the neighborhood the track coaches came over to thank me for taking some of the team members to the big track meet on Saturday. It had been a Saturday open house at school so they hadn't been able to take the team and they needed a parent to accompany the members scheduled for that day's events.
It made for a busy day on Saturday but I enjoyed watching the kids go through their warming up routines and competing. M ran in the girls' 800 meter event which was broken down into about 18 heats of 20 or 21 runners and she came in about fiftieth over all, not good enough to go to the "all Tokyo" event in July, but better than her personal best so far, so she was quite satisfied. Her best friend came in first over all in the girls 100 meter hurdles and a few of the other team members also qualified for the next stage.
Posted by Kathy on Tuesday, June 17, 2008
After so many rainy days last week, rainy season here has been officially declared on the public television news. The trains have had troubles with all the rain and have been running slightly off schedule. It made for a bit of a delay on Tuesday when I took my friend from downstairs with me to the Cancer Center for her quarterly exam. We ran into the morning commuter rush and the trains were very crowded. At one station there were eight extra assistants on the platform assuring that the doors would actually close by either delicately tucking people into the train or barring the way so more people wouldn't lean into the masses on the train hoping to be absorbed and on their way to work instead of waiting for the next train. When the doors finally closed, trapping bits of umbrella tips and clothing to get soaked on the way to the next station where the doors on that side of the train open, the assistance crew did gestures to convey departure readiness to the conductor while carefully watching to make sure people were far enough back from the train. I plan to get the Dance of the Metro Assistants on my phone video next time I find myself on that platform in a rainy rush hour. They had lovely neon green vests and white gloves.
I maneuvered a space for my 77 year old neighbor near the courtesy seats and made sure that nobody could shove her or bump into her; she doesn't need that with brittle bones as a long term stage IV breast cancer survivor who beat all those bone mets. The person in the seat in front of us even responded positively to my request to please let my friend have the seat so the trip went well.
We arrived a little after 9:00 a.m. and each went our own way to get the medical part of the day over before meeting another survivor friend who synchronizes her quarterly exams with my neighbor's so they can enjoy lunch together. The ladies of this lunch club seem glad to have someone to watch over my neighbor on the trains there and back and have made me a regular member now. They've already made reservations for September.
I had my heart scan (echocardiogram) and lo and behold my ejection fraction is back up to 75%. This was a relief as I'd been concerned about decline due to Herceptin. Then I went for my I.V. and was just walking out the door of the outpatient chemotherapy center when my neighbor and her friend arrived on the escalator in search of me. We'd all finished early because many of the oncologists were away at a symposium (maybe in Chicago) so their patients weren't in for check-ups or treatment that day.
We went down to the lobby to pay our bills at the newly installed automated cashier machines which naturally had one employee (formerly from behind the cashiers' counter) beside each machine to guide patients in their use. I was a little surprised that the machines accept cash only. Other hospitals using similar machines allow debit cards, credit cards and cash options.
The rain and wind had picked up while we'd been shuffling around getting poked with needles etc. so we decided to take a taxi to the restaurant where we had reservations. Another survivor friend yet joined the three of us and we enjoyed a relaxing two hour lunch of dainty bite sized portions of too many courses of traditional Japanese cuisine for my chemo brain to remember. The discussion varied between comments on the appearance, texture, flavor and ingredients of the dishes and news about various doctors and associations. One of their favorite doctors is now the head of the Hospice Care Association in Japan now and they told me not to hesitate to ask them to contact him if I should have any questions about hospice here. He was also the doctor who got them hooked on this lunch routine. He used to have a big lunch party a few times a year with the women in his care.
Tomorrow is my big day as pre-school teacher for a day. A friend has asked me to substitute while she's off to the States for her daughter's high school graduation. I expect to have a lot of fun singing, dancing and making crafts with the cuties.
Posted by Kathy on Thursday, June 05, 2008
The first week on this oral chemotherapoy went well enough; minimal nausea, no allergic reactions, slight fatigue. The only effect I was concerned about was swelling of my feet and ankles so the new and comfortable SAS shoes sent to me in the mail were too small. I'd been gleefully walking around in them for a few weeks and then BLAM! an alien replaced my already large feet with even bigger ones. A few nights of sleeping with my feet up on a chair resolved that and I can walk on my triple cushioned wonders again. Whew!
I had my Herceptin drip on Tuesday and then spoke with Dr. F. who'd been out lecturing at Tokyo University that morning. We decided that things are good so far and he gave me a two week prescription and sent me upstairs to get a baseline x-ray so we can compare in July.
Wednesday I rode out to the immigration office in Tachikawa with a friend who needed to get a re-entry permit. We met with another friend for lunch and laughs before driving home again to get ready for Wednesday evening classes.
This morning I decided to take a short nap after getting the kids off to school and the garbage out. I dozed off at about 8:30 and woke up when L came home from school after 3:00. Just a short nap...I'm not sure if it's a Xeloda side effect or if I just needed to catch up a little after those nights of half-sleep when I was keeping my feet up on the chair...I'm well rested for the upcoming sports days at each school at any rate. Now to plan all the picnic lunch boxes.
Posted by Kathy on Thursday, May 29, 2008
I made my way to the station in buckets of rain as this season's typhoon number four passed near Japan. The 6:30 train was not as crowded with commuters as usual and the trip to Shinjuku was not so packed. I took the looooooooooong escalators down from the Keio Line platforms (which are already underground) to the Oedo Line tracks near the center of the earth and was surprised to see that these trains were less crowded than usual too. I even got to sit down for most of my ride to Tsukiji. By 7:30, when I arrived at Tsukiji, the rain was not so heavy but the wind was whistling strongly through the city buildings. The number of people at the automated reception machines was less than half of the typical crowd. The TV on the lobby informed me that the morning trains for a number of train lines were running 20 to 30 minutes late because of the heavy rain and one train line had stopped completely. My morning train must have been one of the last trains before the delays began.
Dr. F called me in promptly at 8:30 and I told him that I'd decided to start with the Xeloda option. He confirmed a few things and explained again about what to expect and then gave me a prescription for a week's worth of pills to be taken after breakfast and dinner every day. He'll come up to the chemo room next Tuesday while I'm getting my Herceptin drip to give me the results of next week's blood work and ask how I'm faring on the Xeloda before prescribing another two weeks' worth. If I tolerate it well and the blood work looks good, I'll be on a three weeks on / one week off schedule of this oral chemotherapy and continue with the weekly Herceptin IVs for now.
The rain had stopped by the time I finished my IV and headed out the door around lunchtime but the trains were still running a little late. The sun was shining brightly by the time I got home.
I started on Tuesday evening and haven't noticed any trouble so far (knocking on wood).
Posted by Kathy on Thursday, May 22, 2008
Results of the April 22 CT scan show the appearance of a new 1.8cm tumor in the lower part of the right lung. We determined that the effectiveness of Herceptin + Taxol has decreased. Recommend changing treatment to Herceptin + Navelbine or Herceptin + Capecitabine (Xeloda). The chance that either of these will be effective is about 20% and main side effects are decreased white blood cell count and inflamed veins for the former and decreased white blood cell count, diarrhea and hand-foot syndrome for the latter. After these drugs, using Lapatinib (Tykerb) which is due to be approved in Japan within the year, is in range.
As there has been a recent tendency for ejection factor to decrease, we're concerned that some heart damage is beginning to show due to the long term use of Herceptin. We'll re-check in a heart ultrasound in early June.
So, I didn't get any Taxol on Tuesday but I did get my weekly dose of Herceptin as my heart ejection fraction level from the last ultrasound, although lower than previous scans, was still within an average range. I asked for a week to think about the options as I thought I'd better read up a little more on the effectiveness and side effects of each before jumping in to anything. I'm leaning toward the twice a day oral Xeloda even if I still go every week for my Herceptin IVs. I have to make a list of pros and cons though.
The tumors that we were zapping away at with the Taxol have virtually disappeared, so I'm glad that it did work so well while it worked. The new tumor appeared after my January scans though, while I was still on Taxol, so I guess it's farewell Taxol, hello feeling in my fingers and toes (already returning after the three week break I had). The CT scan did confirm that there are no metastases to other organs or bones too. Costs will remain 44,000 yen a month max. after refunds so I won't have to worry about cost limiting my decision anyway.
Posted by Kathy on Thursday, May 15, 2008
The kids and I (except M who had previously arranged plans) went to the annual Family Fun Festival otherwise known as Oyako Matsuri near the station. The kids were encouraged to make the usual fabric craft flowers to celebrate Mothers' Day and play various games with volunteers. This year the local youth center organization had a stamp rally where kids could get cards stamped for measuring their grip, flexibility and vertical jumping prowess at their booth. Completed cards could then be shown to receive a small prize like a pencil or a figurine or a ticket to try the Velcro wall jump http://www.metroinflatables.com/showgame.html?id=36 which was set up in the large room on the 12th floor where I emceed the kindergarten graduation party a few years ago.
Naturally, the kids wanted to try the ultimate stage of this physical fitness test so we went to get them some stamp cards to record their performance and were told that the parents should also participate. "Fine by me." I thought, and had fun gripping, stretching and jumping up with a string attached to a belt around my waist and a measuring device. Results: I have a much stronger grip than the kids do and I'm more limber than the kids are in spite of my stomach getting in the way but they can all jump about 10 inches high than I can.
Off we head to the elevator for the final stage. N and L were already in Velcro jump suits with Velcro mittens and feet by the time J and I arrived. The wall and a ten yard long "runway" were basically fancy variations of the age old inflated moonwalk with a similar inflated target shaped trampoline between them. This set filled the entire room.
L had trouble picking up any sort of speed on the huge air filled tubes and didn't bounce very high. N's performance was not any more inspiring. J and I were called over to get our Velcro suits. I had to wait until J finished her jump as they only had one large sized suit and the medium large one was just to small for big old me to squeeze into. I watched her struggle down the runway and throw herself at the wall to be peeled off by two volunteers and hoped that the suit would be too small so I could bow out of the potentially embarrassing situation. I couldn't decide which would more embarrassing, being too fat for the suit or to clumsy to even make it to the trampoline, and decided that injuring myself on a huge cushion of air was probably more inconvenient for all involved.
No such luck; the suit fit fine so I bravely made my way to the starting point. I managed to run in slow motion down the runway, jump (more like fall...) on to the trampoline and reach for the wall as I ascended only to find that I'd stuck to the wall before my feet ever left the trampoline. I guess it's made for shorter people. At least I didn't twist or break anything. I did wonder though, on the way out the door, where all the other moms were at this stage. They were probably downstairs getting pencils or cheesy figurines.
Posted by Kathy on Sunday, May 11, 2008
The ladies of our local chapter of foreign wives of Japanese men held a baby shower for a friend today. It was a potluck lunch and from the lovely assortment of dishes, it was easy to deduce that most of us were ready for a break from Japanese cuisine. We had spinach quiche, a Mexican salad with layers of lettuce, onions, avocado, salsa, olives, sour cream and cheese to be spooned over tortilla chips, cheese and crackers, tomato stewed chicken, a black bean dip with pita bread, a summery pasta salad, a healthy green salad, chocolate chip muffins, a chilled blender borscht with sour cream (yes, I finally found canned beets near Tsukiji!), a friendship cake (the starter was smuggled into Japan in a suitcase), chocolate mousse, a yellow cake topped with chocolate, strawberries and grapes - nothing Japanese on the table at all. We did have a little iced green tea on the drink table, with hazelnut coffee, raspberry leaf iced tea...I was nervous about offering my pitcher of violently purple soup but it sold well, not as well as the chocolate mousse, but that can't be helped. The kids had sushi with S as the lunch was a ladies only event.
Posted by Kathy on Monday, May 05, 2008
I finished my IV early on Tuesday and had a few hours before my quarterly CT scan so I traipsed over to Shinbashi a few blocks away to shop at Hanamasa, a wholesale grocer, and save a little on the monthly food expenses. The CT scan technicians managed to fit me in a little earlier than my 2:30 appointment so I dragged my sacks of groceries into the changing cubicle with me and was finished by 1:30. The next two Tuesdays are national holidays so I won't have treatment or hear about the results until then unless Dr. F. finds anything he doesn't like, in which case he'll call and have me come in earlier. It's nice to have a break.
Tomorrow I plan to take the kids to the other side of Tokyo to watch M run 800 meters in a track meet if the coach deigns to accept her application to continue in the track team. The students have to sign up every year and he was giving M and two of her friends a hard time yesterday about appropriate attitudes, discouraging them from ever doing track and field again. The traditional thought, according to S, is that degrading students and telling them to quit is supposed to encourage them to try harder. Silly me, and I thought he was telling them to go home when he shouted "Go home!" to them. Sigh. The coach called last night to apologize for misjudging a situation and overreacting and asked if M and the other two girls could come in at 7:30 to discuss and resolve the situation. Hopefully peer pressure won't keep them all from throwing in the towel just yet; they're all pretty good at the sport.
Posted by Kathy on Friday, April 25, 2008
It seems that the bomb was never actually dropped, but that the number 1 engine of B29 T-42 (also known as Mrs. Tittymouse) of Squadron 875 was hit by flak and the plane lost its left wing, last seen going down in a spin on 04/07/1945. The bomb must have been part of the debris from that crash. An account written by a Japanese man who was a child in the neighborhood at the time describes the strong smell of gasoline and the shock of seeing the picture of a topless girl on the nose of the craft surprise that the plane was equppied with beverage dispensers offering coffee, tea or milk at a time when the Japanese military did not take indvidual soldiers' preferences into consideration even if it had been possible to offer such luxuries. He was also saddened to see how young the crew members who did not survive seemed when laid out in a row before being buried in the local temple, Empukiji, graveyard. The eleventh crew member surviced and was taken prisoner and sent to Omori POW camp and returned to the States after the war where he struggled much with PTSD.
Posted by Kathy on Wednesday, April 16, 2008
On March 27, 2008, an unexploded 1-ton bomb thought to have been dropped in an April 7, 1945 U.S. B29 air raid was discovered buried in a neighborhood yard along the train tracks. Japan Self Defense Force experts have assured the city that there is no danger of explosion without strong impact so the yard has been cordoned off and security personnel have been dispatched to keep watch while the city informs the neighbors of disposal procedures and precautions. The city has announced plans to regulate traffic and clear a 500 meter radius of neighborhood around the bomb on May 18 for disposal of the unexploded ordnance. We're about 700 meters away but there are two stations and quite a few residences and businesses, including a 32 floor high rise apartment and two large supermarkets within the evacuation area. Apparently the Keio Line's underground train line pre-construction magnetic exploration and stories of the April 7th air raid led to the discovery. Maybe the entire neighborhood can come watch this year's city-wide kiddy sumo that day at the American School in Japan on the very far side of Chofu from anything (well outside of the 500 meter radius).
Posted by Kathy on Sunday, April 13, 2008
I left breakfast and lunch (well protected from the cat) for the kids and headed off to Tsukiji for blood work, an exam and discussion with Dr. F. and my usual full course of Herceptin, anti-nausea and anti-allergy pre-meds and Taxol with a saline chaser. We decided that as the neuropathy (numbing of my feet and hands) is not progressing and I'm not getting any rashes or other cumulative side effects, I should continue with the Taxol every three out of four treatments for the time being. Last night I spread out the CT scan images of approximately the same slice of my lungs from Oct2006, Feb2007, May2007, Oct2007 and then Jan2008 to visualize the journey so far and try to imagine how much smaller I can zap the lung tumors away with a little more Taxol. I still expect that I'll stop the Taxol sometime this spring as I don't like the side effects of the pre-meds (mainly the weight gain and sleepiness) and see that the tumors are back to their Oct2006 size (when I wouldn't have noticed them without a CT scan) and weren't taking up precious breathing space like they were from Feb2007.
The Herceptin has been effective in halting any tumor growth and I expect it will continue to do so even if I stop the Taxol. With the weekly Herceptin treatments, I could enter a stable status even if the no-evidence-of-disease NED stage is unreachable. I've been very blessed to receive support from a number of ladies in an on-line group to help me continue with the weekly treatments for the next year. Their encouragement and financial assistance has lightened my burden. I'm so relieved to know that I don't have choose between getting treatments and feeding the family.
I managed to get back in time to take L to the dentist as the dentist found two small cavities on Friday morning when I took all of the children in for a check-up and maintenance before the new school year. J's cap on her front tooth needed repair but she and her sisters had no cavities. L had one of his treated on Friday and the other today so they're done for a while. I asked my oncologist about precautions before dental work because one of my 25 year old crowns came off. I'm scheduled for next Friday morning now.
Time to tackle some of the new school year paperwork that each of the kids has brought home for me. I think we need an IN box and OUT box for each child...
Posted by Kathy on Tuesday, April 08, 2008
We managed to keep everyone entertained during spring break and are clearing out the desks and closets this weekend to make room for all the stuff each child will need in the new school year. I thought I was making good progress sorting clothes and putting winter things away but all of the room I made has just been filled with a big load of hand-me-downs from a German friend in the neighborhood. Her youngest son is J's age so L now has a wardrobe that will last through at least 6th grade.
We had a lot of picnic lunches to make the most of the wonderful spring weather we've been having so the kids are all looking forward to school lunches as a reprieve from onigiri (lightly salted rice balls wrapped in nori seaweed).
I traded my crossing guard duties on Tuesday with the mom who had Wednesday morning and wrote in all the class PTA meeting schedules on the calendar and I'm very ready for everybody to go back to school.
Posted by Kathy on Saturday, April 05, 2008
For most schools in Japan, the school year is from April to March with a few intervals off between each of the three trimesters (spring, fall and winter). We're looking forward to about two weeks off before L,N,M&J begin 3rd, 5th, 8th and 9th grades respectively. Ninth grade is the final year of mandatory education here and J will need to study for and take examinations to qualify to enter a high school. Both public and private high schools require some sort of tuition but the public schools cost much less.
The schools are rated on the level of competition to enter and the difficult to enter places seem to have more rigorous academic levels. There is a large variety of schools, some more academic, some offering practical occupational training. Most of the kids from our junior high school tend to go to the academically oriented schools in hopes of continuing on to university or occupational training schools later. We visited a few schools last year to get a feeling for where she might like to attend but have made no choices regarding goals as of yet.
I imagine that as M has different interests and strengths, we'll have to do the same school touring and searching next year to find an appropriate school for her. I'm thinking that I won't possibly be able to attend all the PTA meetings in a few years when we have children in four different schools, two of them probably a train ride and/or a bus ride away. I already have a hard time making it to all of the class meetings with two children each in two neighborhood schools.
I missed N's last class meeting last week because my IV took longer than expected and I decided to meet Mrs. Y for a late lunch instead of rushing back to apologize for missing the meeting. I made it to L's mini concert and last class meeting of the school year after pumping furiously back to the elementary school on my one-speed bicycle from a short afternoon of M and J's presentations in the jr. high gym. This Friday I'll attend half of a class meeting each for J and M as they've been scheduled for the same time after a general meeting in the gym for the 7th and 8th grade parents. Then in April, we do it all again to meet the new teachers...
I enjoyed the company of my neighborhood British friend on my trip to the cancer center today. She met me on the way to the station at 6:30 this morning and brought along crossword puzzles and a book to entertain me. She was even pleasant when the steroids made me all sleepy and I couldn't help out with the clues too much. I hope she had time for a nap this afternoon after the early morning and long trip. I slept for about an hour after I got home while L and two friends played Nintendo games in another room. Not much of a hostess...but L was glad to be able to have his friends over as he usually goes off to play at their places and we need to reciprocate once in a while.
Posted by Kathy on Tuesday, March 11, 2008
The mother of one of L's playmates who lives near the junior high school asked if L had two elder sisters there. She wanted to know if they were twins and was surprised when I said that they were in 7th and 8th grade. She went on to comment on how much they look alike and how wonderful it was that they were both in the track and field club. She'd seen them running laps around the school, one always a few minutes after the other. She was flabbergasted to learn that it was only M running lap after lap and that J is in the brass band. M was pleased to hear that her speedy laps had confused someone into thinking she was twins.
March is the end of the school year and M and J have three days of final exams next week so I'm taking L and N off for a sports event tomorrow and a friend's birthday on Sunday to cut down on the commotion factor so the girls can study a little.
Posted by Kathy on Friday, February 22, 2008
I've had a cold three weekends in a row and spoke with my oncologist about it between the second and third times. My white blood cell count is still plenty high, which is good in terms of treatment. I just come into contact with too many people I suppose. We did speak about taking a break from the Taxol (chemotherapy) part of the regime from March or April and staying on the cancer supressing Herceptin as a QOL decision (quality of life).
I'm looking forward to seeing Mrs. Y, my former host mother, on Tuesday after treatment and then will going in a little later than usual the next Tuesday as my downstairs neighbor has her quarterly appointment and would like to travel there with me. The trains are less crowded after 9 a.m. but the wait for a chair or bed for the I.V. may be a little longer. This shouldn't be a problem though, as it is my "Herceptin only" day this month and the I.V. itself will only take an hour or ninety minutes instead of three hours. We can chat if she finishes before I do and then come home together.
Posted by Kathy on Sunday, February 17, 2008
I haven't posted much lately. A week ago today a seven year old little boy from down the hall was hit and killed by a kindergarten bus and we've all been quite sad. Today his little brother started taking his own kindergarten bus again but already he seems a little more grown up after losing his big brother and the week of mourning, wakes and funerals disrupting and changing his life forever.
Posted by Kathy on Thursday, February 07, 2008
I just updated my links on this blog to include a link to CJ Hats, a company founded by an Inflammatory Breast Cancer survivor who really understands about comfortable head wear and full coverage. I have about an inch of hair in some places now (this time around I have a very receding hairline and look like Phil Collins), in spite of the continuing chemotherapy and I am very glad to have nice hats to keep my head warm and comfy so I don't have to wear wigs everyday. Some of my hats are from friends here in Japan who have knitted, crocheted or sewn them and others are from CJ Hats. Mary Ann, the owner, offers advice and encouragement in addition to a very large variety of hats at very reasonable prices.
Right now, CJ Hats has a FREE SHIPPING OFFER and it's WORLDWIDE! (Friends here in Japan are often frustrated by the lack of international shipping services when shopping on-line). The site http://www.cjhats.com/ explains that shipping within the U.S. is free for orders over $50 and internationally for orders over $75.
Posted by Kathy on Sunday, January 20, 2008
The funny and nice old woman from downstairs came by last night to ask for a loan of some rice until her pension arrives in mid February. She is very tiny and any shopping at all involves a long trip to the store and back with her day pack. She uses the day pack to keep both hands free to find her way there and back and it takes her about an hour to navigate the journey downstairs, out to the street and slightly more than a hundred yards down the street to the nearest convenience store and back and she tells me that the two or three items (a sweet red bean paste filled roll, instant noodles and a chocolate bar usually) that she buys are very heavy to carry. I can't imagine her lugging a few pounds of rice home from other farther away stores (she is specific about where each type of product should be acquired and very loyal to each store she visits). Although she is very reluctant to make use of the various delivery services, not wanting to be seen as anything but totally self sufficient, she has relaxed a little and will let me help out with the rice and a few other things, always insisting on giving me money later, when her bimonthly pension payments arrive. She always insists in paying me more than necessary so I stop by with treats like the sushi egg omelets that I "have too much of" or brownies, which I know she likes. Yesterday she stopped by to chat for a couple of hours while I cleaned the kitchen and she decided to give us her toaster that she never uses. Now I'm baking bread so we have something to toast this morning.
Posted by Kathy on Saturday, January 19, 2008
Posted by Kathy on Thursday, January 10, 2008