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.



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.