Tsukiji Update

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

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

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

Precursor to Summer Vacation

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

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

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

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

Taxol Break

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

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

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

Hot and Humid

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

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

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

Better Day Today - Whew!

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

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

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

Holy Cow!

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

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

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

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

Shorn

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



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

Hair We Go Again!

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

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



The menu?

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

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

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

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

and

50 mL saline solution 10 minutes (flush veins)


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

Martha Stewart Moments

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

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

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

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



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

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

Time flies!

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

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

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

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

May Onco. Update

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

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

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

A Very Sunny Day

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

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

Kiddy Sumo 2007

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

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

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

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

A Little Music

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

Well into Spring

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

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

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

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

Golden Week

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

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

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

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

Tokyo Tuesdays

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

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

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

X-Ray Results

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

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

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

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

Matriculation

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




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

Celebrating Spring

Back to School

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

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

Oops, I Missed a Week or So...

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

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

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

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

Lots of Calories

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

Last Week of School

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

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

So far so good

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

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

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

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

Down to the last 12 hours

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

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

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

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

Overwhelmed

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

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

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

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

A Day Later

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

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

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

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

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

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

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

The Phone Rings

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

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

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

Where Did This Month Go?

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

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

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

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

Three Day Weekend

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

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

Not So Bad on a Sunday Morning

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

The Gym

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

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

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

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

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

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

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

Good News

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

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


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

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

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

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

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

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

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

City Jr. High School Art Exhibit

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

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

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

Fun On Ice

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

2007 New Year's Day Breakfast

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

Happy New Year

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

Homecoming

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

S is Stable

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

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

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

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

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

200th Post!

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

S came back from his consultation with the cervical spine specialist (who also happens to be a neurosurgeon ) at the downtown hospital my downstairs cancer survivor neighbor (who happened to be the chairman of the Tokyo Nursing Education Association years ago and is a treasure trove of knowledge) recommended. He said that the doctor "saw through" him right away, saying that the condition was not from a softball injury and scolded him for abusing his body through macho overexertion over the years, telling him that he probably had bad teeth too from the looks of his spine in the MRI and CT scan images. BINGO! S immediately trusted him and opened up about how much help he is hoping to get. I know that he always tries harder than he should if anyone is watching when he does things like judo, softball, pounding rice cakes or rescuing damsels in distress by lifting their cars out of ditches.

The doctor did tell him that with surgery, he can expect much recovery of the lost sensations in his arms and he even called around at the hospital to arrange all the necessary personel to go ahead with the surgery as early as possible. S and I will go next Thursday to check him in and he'll have surgery to decompress the nerves in his 3rd and 4th vertibrae on the 15th. He should be able to come home on the 25th (which isn't a holiday here). I have many questions for the doctor when we go on Thursday.

I expect I'll be quite busy for a while and may not be posting much but I will try to keep in touch.

I am so THICK!

I got all the way to the Cancer Center, arriving a little early even, only to have the reception computer reject my card as "no appointment on record." I waited until 8:30 when the nice people at the reception desk started fielding questions. They showed me that I'm scheduled for next Wednesday, not today. In retrospect, when I'd spoken with Dr. F on the phone to reschedule I remember hearing "December 6th" and making a memo on the calendar but then deciding that the 13th would be safer in terms of making sure my cell samples had arrived and been re-examined. Our calendar has appointments penned in on both dates and I, anxious to hear what he has to say, didn't even think of calling to reconfirm which was correct. It was a wasted 2 hours there and back on the train, but I did find a better way to get a seat on the subway; get on a train in the opposite direction, go one stop away from the center of the city and change to the train going back through Shinjuku and on to Tsukiji. Everyone and their cousin seem to get the train at Shinjuku, so the platform is very crowded, but the platform one station away in the "wrong" direction was deserted.

When I arrived home much earlier than S expected me to, I found J sleeping in her futon with the same stomach bug that L and then N had last Friday and Sunday respectively. She seems a little better than they did, but not well enough to go to school today or tomorrow. Who's next? Nobody, I hope.

S Brought His CT Scan & MRI Images Home

He hasn't said much about what he was told at his appointment today other than that the doctors at that hospital admit they are not spine specialists. When I told him about a better hospital in downtown Tokyo with some cervical spine specialists and that he should get the images from his test so they could look at them instead of starting from scratch should he decide to go for a second opinion, he must have been listening. He came home and pulled out my horribly written memo with contact information for the better hospital and called to make an appointment there on Thursday afternoon. I hope that the new place will have more specific information for him and that he will let them help him.

Blech!

Friday found us with a sick boy but L's stomach bug cleared up by Saturday afternoon and nobody else caught it, or so we thought, until N began throwing up at 4a.m. today. She was very disappointed to miss a field trip to the local mayonnaise factory with her class. J and M raved about how exciting it was when their classes went.

http://www.kewpie.co.jp/know/openkitchen/ok_02.html

shows some of the fancy machines that her classmates are watching as I type.

I called the factory to inquire about openings for a family tour later this month and was able to reserve 5 spots on the last tour of the year at 1:00p.m. on Christmas Day. They close the plant for 2 weeks from the 26th. Natalie is very happy that she'll get to do the tour after all even if it's on Christmas Day. The elementary school children have school in the morning that day and are expected to help with the year-end cleaning and pick up their report cards to bring home. I think that J finishes for the year on the Friday before, but I may be mistaken. No photos are allowed within the factory, but we may take our Tarako Kewpie costume for a shot at the gate as this is the manufacturer of that product.

S is off getting results for his spinal CT scan this morning and I postponed my head ultra-sound to next Monday morning so poor N wouldn't have to be all alone in her misery. She's very good about using her bucket. Here's hoping that nobody else gets this bug so I won't have to postpone my Wednesday onco. appointment yet again.

Thankful for Good Friends and Good Food Today

U.S. Thanksgiving happened to fall on a Japanese holiday this year, so the kids were out of school for the day. An American friend a few stations away offered to host a Thanksgiving get-together at her house so I took the younger two children (J has mid-terms tomorrow and needed some quiet time and M had other social plans), a big bowl of mashed potatoes and a smaller bowl of Japanese pumpkin to enjoy the day. Other multicultural familes brought homemade cranberry sauce, coffee cakes, pumpkin cheese cake, salad with feta cheese, and really good wine. The hostess procured and prepared the turkey, made stuffing and baked a pecan pie. It was all delicious but now I want to order a case or so of the Australian Shiraz that was so smooth. Mmmmmm, antioxidants are good for me, right?

The relaxing day was just what I needed after the first half of the week, which was a little busy. I resolved my problem of having to be in two places at once by calling my new oncologist to confirm that he had all the data he needed for my next consultation and learning that the cell samples hadn't arrived yet. That meant I would have no reason to truck all the way downtown and rush back to check S out of his hospital so it made the day a little less hectic. The strategy meeting has been rescheduled for 9 a.m. on the 6th of December (2 days after I go there for an ultrasound of my head to confirm the absence of cancer there and, hopefully, the presence of some form of brain) so I get to take the early morning trains with six million other people. I think I'll wear a disposable mask.

S has an appointment on the 4th of December too, to discuss treatment now that the tests have been completed. He wasn't too confident of the doctors' style while they tested him; he thought they were bumbling more than they should have been indicating that they were unfamiliar with the process. From his description, it sounds like they gave him a spinal tap but they may have just been injecting the contrast for the imaging. He's sure they've permanently damaged the nerves in his lower back when they should have been working higher up. He did admit to feeling much better when he returned to his own futon some of his discomfort is most likely from his general dislike of hospitals. He was well enough to take J out for sushi for lunch today and hold a study session at our classroom for the students who have tests tomorrow. Whew.

The Plan for Now

I packed a bag for S and he will go for his three day stay for the tests he needs and make any decisions about surgery or second opinions after that. What a relief! He filled me in on what his students are doing so I can take over his classes tomorrow, Tuesday and Wednesday so I guess I'd better get working on fixing some easy dinners for the kids for those nights. Fortunately J will be home right after school all week so I don't have to worry about her coming home in the dark while I'm not home.

I'll go with him tomorrow to make sure he gets checked in and ask a few questions.

More on S

Well, the MRI showed that his spinal cord is compressed in his fourth vertebra (C4) and the doctors say he should go stay for two nights for a CT scan with contrast and other tests to determine how they should surgically proceed at a later one month hospital visit. The administration called today to say they had a bed for him from Monday morning and he is scheduled now. The only problem is that he says he has never heard of the university to which the hospital belongs (he only acknowledges the top 3 universities in Japan and the rest are all inconsequential to him) and is suddenly considering cancelling because they might mess up and they looked terribly young to have a medical license...

This could go two ways:

1. He'll go to one of the two central Tokyo university hospitals which actually list themselves as having spinal cord specialists within their orthopedic departments (Tokyo U. or Keio U.)

2. He'll go to a local chiropractor or acupuncturist to see if they have any better advice.

If he refuses to go for the inpatient check-up nearby, I'm going to push for the hospital I found that is staffed mainly by Keio U. doctors and specialists. He is a Keio graduate so he can't complain about the dubious qualifications and it's easier to get to by train (on the way to the cancer center in fact).

If he needs to be in the hospital for a month, we may have to hire our top student to teach a few classes because I know I can't teach 7 afternoons and nights a week and still feed the kids. The student came over today and has indicated the times he will be able to fill in for S so it looks like we can manage.

I've been writing a list of questions I'd ask if it were my neck on the block but S is convinced it's an old sports injury and not congenitally narrow or arthitically induced so he may not ask. I doubt that he'll let me go with him to speak with the doctor, but I'll print out the questions anyway and see if it makes a difference. Maybe I can figure out a way to e-mail them to the doctor...

S Breaks Down and Submits to Medical Exam

S asked me "Where can I get a scan?" yesterday, making it sound like he wanted to scan some document or photo. "What's wrong with the scanner at the classroom?" I ask, to which he shakes his head and I suddenly understand that he actually has decided to do something about his increasingly numb hands and arms. I quickly pulled out a list of hospitals near here that have MRI and CT scan equipment and are within cycling distance. One hospital website even showed the number of surgeries in a year for neurological problems with the number of neck surgeries specified (500 total, 35 neck). I had written it all in the Chinese characters that I found on the various websites and he was impressed enough to choose one and go for a check up. Hooray!

He came home in a neck brace with a schedule of MRI scans, physical treatment and further exams. I think he was probably waiting for me to finish up with my treatment so he could have a turn but has finally understood that he'll never get a turn if he continues to think that we have to take turns taking care of our health. I hope that he will refrain from Sunday softball for a while until he understands what is causing his trouble.

The Consultation

I stopped downstairs at 9:15 to pick up my survivor neighbor and we walked to catch the train downtown where we got on the subway to the National Cancer Center. We arrived at 10:30, half an hour before our appointments, so she would have time to give her pre-consultation blood sample. It was very crowded though and there was a 50 minute wait in the blood test area where we met one of her friends who had arrived about 10 minutes before we did and was also waiting her turn for the needle.

The doctor called the first women while she was off giving blood so my neighbor went into the examining room first with a "She's off giving blood so you can see me now instead." So he brought her records up and they had a talk while I waited outside for the other woman to come back to let her know that her turn had arrived. He saw the other woman next while my neighbor went off to give blood. Both women are basically visiting to check that their cancer hasn't advanced and get their blood work so they can plan their diets for the next couple of weeks or months until their next appointments.

Then it was my turn to meet the infamous Dr. Fujiwara. I'd been expecting a 60ish guy but he was only about my age or a little more. He offered to write the notes about our consultation in English (they always write in duplicate and give a carbon copy to the patient), but I need them in Japanese for Shigemi so I thanked him and asked for Japanese.

He told me that they are still waiting for a sample of my tumor from two years ago to arrive from Kyorin so they can re-dye and re-do the cell work to confirm the lab results before outlining a specific course of action. He did say though, that from last month's CT scan results he could see several "shadows" ranging from a few millimeters to 2 centimeters (in my left lung) and that further treatment is necessary. The CT scan showed that other organs are all healthy and the bone scan confirmed that there are no metastases to my bones. The electrocardiogram and heart ultrasound showed I have a strong and healthy heart.

Basically, he needs to reconfirm the cell work on the original tumor before he recommends the next step. He looked me in the eye and explained that at this stage, when breast cancer recurs, there is no cure and that all treatment is geared towards living a quality life with cancer. My neighbor told him indignantly that Kyorin hadn't even taken a sample of cells from my lungs but he concurred with my Kyorin doctor that a lung biopsy would be more trouble than it's worth as the CT scan clearly showed the breast cancers metastases.

I mentioned my concerns of possible genetic tendency to blood clotting (Factor V Leiden) and he immediately looked at my bloodwork from last month and confirmed that the platelet count was a little high and that he would check for Factor V Leiden next time to see how it might effect my treatment options. He suggested basically the same thing as my Kyorin guy; induce menopause and prescribe anti-estrogens or aromatase inhibitors and constant vigilance. Then if that doesn't keep the shadows in check, the next step would be Herceptin alone or Herceptin with more chemotherapy, probably Taxol or Navelbine.

I'll get a head ultra sound and then an ultrasound of the radiated area sometime in the next couple of months as well as having my veins in my legs, especially the leg that had the clots last year, tested.

We three survivors finished at about 1:00 p.m. when we proceeded to a nearby restaurant where we met another survivor friend for a delicately presented Japanese 10 course lunch. The other women are inspiring and deserve their own posts sometime.

One had lungs mets and was told that she'd exhausted treatment options and should contact a hospice. She went home and dug up her garden to plant vegetables and started eating only genmai, the vegetables she grew and tofu products and gave up coffee, chocolate, dairy products, fish and meat. Eight years later, she goes for check-ups every 3 months and is doing fine. She doesn't mind a little fish now and then, so I think that she enjoyed lunch today as an occasional treat. She handed me a bag of genmai and black rice cooked with beans and packed into balls (rice balls are sort of the Japanese version of sandwiches; a convenient finger food) and some dried radish and freeze dried tofu to make for dinner tonight so I could try her diet. I told her how I had considered genmai (brown rice) capability when buying our most recent rice cooker but that I hadn't managed to convert the family from white rice yet. She said I should go ahead and cook a batch and freeze portions for myself and let the rest of the family eat whatever rice they like.

The other woman is a retired genome researcher but will be going to London next year to work again upon invitation by a genome research lab there. She asked to see my CT scan results and was sympathetically worried for me.

The kids are begging for computer time so I won't delve into the sensory pleasure that lunch turned out to be but it was certainly worth a trip downtown and a morning in the hospital for...

Halloween Party

The weather cooperated and the party on the lawn with a live brass quintet was a lot of fun, as usual. The quintet got a kick out of J's costume and played the theme song from the series of TV commercials where she got her idea.

A Pod of Codfish Eggs

Tarako

Tarako

Tappuri

Tarako...

The local coven attended the annual Halloween party.

Costumes

Two of M's classmates came over today to work out some witch costumes out of our pile of old clothes and accessories. We invited them to come with us tomorrow to the annual Halloween party held in a nearby botanical garden. They want to go as a trio of witches but N, of course, wanted to be included so we had to get four witch outfits ready to make a quartet. L will wear the bat costume that J wore a few years ago and J will be a Kewpie doll dressed as a large red pod of codfish eggs. She and her friends like a series of commercials for a codfish egg spaghetti sauce that uses this character. http://www.youtube.com/watch?v=yoUq16ql9sE shows the original Kewpie, J will probably just use her own face unless she wants to make a mask tonight or tomorrow morning.
With the leftovers in the dress-up box and a little black eyeliner, I'll probably be a pirate (probably more like Smee than Sparrow). I'm looking forward to seeing many of my foreign wife friends and their families. This party seems to get bigger and better every year.

National Cancer Center

I should get to bed now but I just wanted to post that my visit to the center went well yesterday and the ball is now rolling to get all the necessary information for a consultation on November 7th with the head of the respiratory and breast cancer divisions about the status of my cancer and the treatment options. Tomorrow I catch an early train to be in time for an 8:30 appointment to get a shot of isotopes to illuminate my skeleton for a scan at 10 or 10:30. That means S gets to make sure the kids make it off to school on time and I get to wander around the fish market and vicinity while I wait for my bones to absorb the radioactive stuff. It isn't dangerous to people around me and I don't expect people will notice any glowing, even if I feel like I glow. :-)