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.
11.24.2006
Thankful for Good Friends and Good Food Today
11.19.2006
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...
11.14.2006
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.
11.07.2006
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...
10.30.2006
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.
10.28.2006
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.
10.26.2006
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. :-)
10.19.2006
NCC Appointment Set
I picked up the documents I needed from my oncologist at Kyorin to apply for an appointment at the National Cancer Center across from the fish market in Tsukiji. I faxed the cover letter, my doctor's request, my request (with contact information) and a brief history of my case written by my doctor on Tuesday afternoon.
I got a fax today informing me that I should be at the NCC by 10 a.m. on October 25th and that the doctor I had requested (breast and lung specialist who takes care of my downstairs neighbor) would be seeing me. My neighbor wants to go with me, so I took the fax downstairs to show her. She was pleased that I got an appointment so soon.
She looked a little confused when she saw the examining room number on the fax. "That's not Dr. F.'s room." So she called the center and got Dr. F., a very important and busy man, on the phone and asked him if he had me in his schedule. It turns out that he'll be away that morning but colleague, Dr. Y, will check me out. He asked her to give me the phone and apologized directly to me about the misinformation in my fax and told me to be sure to tell his colleague that Dr. F would be on my case thereafter.
My neighbor was happy about it and is hoping that I'll have a second appointment that coincides with her November 7th check-up so we can go together and then have lunch in Tsukiji with three other stage IV survivors from her treatment days (many years ago) when we're finished at the hospital.
I checked the NCC website and downloaded the first time visitor forms so I can fill them out and take them with me to save a little time at the reception desk. I also checked their policy on second opinion consultations. They charge about 100 dollars for the service which isn't covered by the public health insurance. I see that my doctor at Kyorin deliberately left out the words "Second Opinion" on his paperwork so it looks like he's referring me to the NCC for treatment and my consultation will cost about 5 dollars. I do have a November appointment at Kyorin, but if I decide I can get better treatment at the NCC, then I can call and cancel my Kyorin appointment.
In reading over the history, I was surprised to see that my cancer is HER2+++ which means that it makes too much of a protein called HER2 and that infusions of Herceptin (trastuzumab) might be effective in shrinking the cancer and keeping it away. I asked last year about whether or not I might benefit from Herceptin. The reply was that it wasn't applicable in my case. I took this to mean that I was HER2 negative so I didn't research further.
It turns out that Herceptin has only been approved for stage IV use and I was only stage III when I asked. I should have asked "Am I HER2 positive?" so I could have tried to get into a clinical trial back then. I'll be sure to ask questions in as many ways possible from now on.
I wrote to (e-mail) Chugai Pharmaceuticals (the Japanese supplier of Herceptin) yesterday with details of my case and asked if they had any applicable trials. I got a sincere but regretful reply this morning. They have a trial going on for possible use in stomach cancer and two trials for the effectiveness of treating early stage breast cancer with a year, in one study, or two years, in another study, immediately after breast surgery. The man did write encouragingly that Herceptin has become available for treatment of stage IV HER+++ patients and that I should speak with my doctor and go for a second or third opinion until I find the right therapy for my case, whether it be Herceptin or not.
The reason I'm looking for trials is that I really think Herceptin may be just what I need, but from what I've read on the internet, it costs about 60,000 dollars a year after the national insurance deduction and some women take it for one or two years while other woman expect to take it for the rest of their lives. Also, with my luck, I'd get a placebo in the trial, so I'd really love to find a trial like " Comparison of Effectiveness of Herceptin with or without Aromatase Inhibitors" where I'd be sure to get the good stuff. I will ask the NCC doctor about the possibilities and also try to meet a social case worker to find out how to qualify for a little (or a lot) of assistance.
Of course if the prognosis will improve only slightly with the drug, it may not be worth it. Women in a survivors group with similar cases even older than mine say that they're continuing with hormonal therapy and regular CT scans to monitor the progress or, hopefully, lack there of, of the cancer like what my Kyorin doctor is considering. I have to start writing down a list of questions for my NCC appointment. Let me know if you have any that you think I should ask.
I'm thinking along the lines of:
1. Do I need a lung biopsy?
2. Would more chemotherapy eradicate the lung metastasis like it did for the lymph metastasis?
3. What is my prognosis if I have more chemo? If I have Herceptin? If I have chemo and Herceptin? If I wait and watch with torimifene only?
4. Wouldn't it be better to surgically remove my ovaries instead of stopping them with regular Zoladex injections?
5. It's possible that I have Factor V Leiden (another protein thing!), a genetic tendancy toward blood clotting problems. Can you test me for this and how might this effect cancer treatments? (Kyorin never followed up on this request.)
6. Is stage IV breast cancer in a lung treatable with proton beam therapy (only offered in about 3 places in Japan, all connected with the NCC and it seems that it offered to a select group of lung cancer patients)? If so, how much does it cost and how soon can I get it?
7. How often should I get CT scans (with iodine contrast), bone scans, MRI, other tests.
8. Are there any clinical trials that would help me get the medications without putting my yet to be born grandchildren into debt?
The goal is to live long enough to worry about knee replacements and Alzheimer's so I can forget all about cancer and dance (thus the new knees) on the sidewalk like my great aunt Millie. She knew what a good time was!
And now I'll give up looking for the spell checker on this page (I don't know where it goes sometimes or if there ever was one) and correct any major bloopers later.
10.17.2006
An Experiment
Do you think I'll get a Nobel prize for proving that sound is actually faster than light?
10.10.2006
Cancer Management
I took my neighbor with me today to see the results of last week's CT scan. The spot in my right lung is still there and maybe, but very slightly maybe, a little larger than it was in my end of July scan but smaller, definitely smaller, than it was in my spring scan.
My advocate neighbor asked why they didn't want to take a sampling of cells and the doctor said that because it was too small to see on an x-ray, it would be difficult to get cells from the spot and very uncomfortable and expensive to get information that we already know (that it's breast cancer).
Then she asked him why he didn't send me along to one of the two or three places in Japan where they could treat me with protons to zap the stuff in my lung for good. He replied that my case would not pass the eligibility requirements as breast cancer in a lung is not so life threatening as lung cancer in a lung.
Then she asked if I should go back on chemo right away to deal with it. He reiterated the need to balance cancer management through vigilance and hormone treatment with blasting cancer with possibly debilitating treatments and that I should expect to be watching and treating for the rest of my life and that my current condition was not especially drastic or immediately life threatening.
We asked for records for me to take with me for a second opinion and he was very encouraging about any actions I might take to be reassured or to help me make decisions on how to manage my cancer. I'll go back next week to pick up the records and he'll send my request form from his hospital administration to the hospital of my choice (the National Cancer Center) to get the ball rolling. My neighbor will also call the National Cancer Center and try to get me seen by her specialist, the head of respiratory and breast oncology (I think it's actually two departments that he heads) when he returns from a symposium in the States.
In the meantime, I continue with the daily toremifene tablets and feel fine enough. I guess living with cancer is better than not living with cancer but still feel that living without cancer would be best...
10.08.2006
A Day at the Zoo
We decided to take a picnic and go out to enjoy the windy but otherwise beautiful weather today. We ended up at the small zoo in Kichijoji where we saw Hanako, the first elephant to be sent to Japan after WWII (a gift from Thailand). She is 59 years old this year and has only one of her four teeth so her keepers feed her large amounts of very finely chopped sweet potatoes, bananas, carrots, apples and other things and chop her grass into 2 or 3 inch lengths. She played with a long hose, tossing it over her back and wrapping herself in it and then pulling it off and starting all over again. One of her teeth which came out a few years ago was on display. It looks like it must weigh 5 or 6 pounds.
L and N enjoyed the squirrels. They were given a bingo sheet with pictures of squirrels in various states of activity. They had to observe carefully to check off as many of the squares as possible. L found the most (or said he did) and was awarded walnut shell that had been expertly broken into two halves and emptied by a hungry squirrel. The zoo employee showed us how the pieces fit together and where the squirrel had scraped a hole along the seem to break it apart. L may have been expecting a more luxurious prize for his efforts but he did remember to say thank you. He looked much happier when all the observers were given badges for completing the tour. The walnut is in a box with some cotton to take to show-and-tell on Tuesday (tomorrow is a holiday).
9.27.2006
Back On Line
After a week of no computer time due to a broken AC adaptor, the local electronics shop finally called to tell me the new one they had ordered had arrived and was waiting to be picked up. So, here I am again.
The neighborhood autumn festival was last weekend. L and N helped pull a big drum and carry a portable shrine up and down the street in exchange for a large package of snack food. The drum was so big that it set off car alarms with its vibrations as men beat it with what look very much like softball bats (with all the brand names filed off to make it look more "Shinto") while the kids pulled it by. The kids earned their afterschool snacks for this week.
I've been quite social these past weeks, meeting friends for lunch and getting out and about much more frequently than usual. I made it to lunch in Harajuku with some friends from the opposite ends of Tokyo, a book and clothing exchange at a local foreign wife friend's house and lunch with a friend I hadn't met in 13 years within this past week.
I was so pleased with myself for clearing out some space in the closet by taking a box of books to give away but ended up bringing home about three times the volume in children's' clothes and a few things for me to wear. We store off-season clothes in big plastic cases and it's about time to shuffle the summer and winter things around again. Hopefully we'll make a little more room then...
The friend I hadn't seen in 13 years and I talked so much that I hope I didn't make her late for work after lunch. She insisted on treating me and I enjoyed rosemary chicken, mashed potatoes with garlic and salad at a downtown restaurant. The portions were big and I ended up leaving a little, which is a first for me. It was so nice to see her after all these years!
On the way home yesterday, I slipped on the wet steps at the station and now have a very dark and large bruise on my backside. I was glad that I didn't knock my head on the steps. It hasn't been this painful to sit since I fell out of the cherry tree onto a railroad spike and needed to get a tetnus booster in the other "cheek" about 36 or 7 years ago. Ouch! It is not so bad today though. I'll have to refrain from posing nude this month.
Feeling sorry for myself wouldn't fill the refrigerator, so I took my sore anterior out to buy some milk and other provisions only to have my back bicycle tire loudly pop halfway to the store in the cold, wet night, bursting my hopes of a comfortable ride home with my groceries. I took the bike through the back employees' entry and up the freight elevator to the cycle service desk on the 4th floor where an itinerant bicycle repair guy will be working on Saturday so I have no wheels for a few days.
9.11.2006
Another Nice Neighbor
When my British neighbor learned that the nice septuagenarian Japanese cancer survivor in my building wanted to come along with me to my next oncology appointment, she offered to give us a ride to make things easier all around. It is very comforting to to have these helpful people around.
9.05.2006
September Checkup
Today I took a neighbor with me to my oncology check-up. She is a 30 year survivor of stage IV breast cancer and alive and well at 74 even after the cancer had spread to her bones. She went through 3 years of chemotherapy treatments about 20 years ago even though her doctors gave her 6 months to live. She said she decided to do all the things she liked to do and that's what keeps her going to this day. She was the dean of nursing at a medical school for much of her career (years and years ago) and, after hearing of my concern about a spot that showed up on my right lung in a CT scan, she decided she wanted to accompany me and see and hear more about the situation to decide if I should go to her oncologist at the National Cancer Center in Tsukiji.
She was impressed at how direct and open my doctor was and said he seemed quite sensible. This was encouraging to hear after going solo for so long. I had a little more courage than usual due to her presence so I asked outright if he (my onc.) thought that the spot was definitely cancer. He gave me an apologetic "yes." Sigh. I kind of thought so too. This edges me into stage IV. Feh! A number. He did say that it is much smaller now after the last part of the chemotherapy and that I should get another CT scan with contrast on 10/4 to monitor it.
He said I should continue with the hormonal therapy he prescribed (which I'd understood to be mainly for post-menopausal women). I'll also need to begin getting monthly shots of Zoladex to shut my ovaries down as the chemotherapy apparently didn't shut them down. He reitirated that an oophorectomy (removal of the ovaries) would have been the best option before Zoladex became available but that 2 years of Zoladex would be much kinder to my body.
It will be a little expensive as my 30% of the Zoladex will cost about $300 a month. (How can a syringe full of liquid cost $1,000?!) The daily pills of torifimene will only be $50 a month. I guess I'd better start working more or learn more frugal ways to live because we'll need about $300 a month per child to pay for high school when that time rolls around. (Even the public high schools are not free.)
If 10/4 CT scan shows that the spot is smaller or even the same size, then just continuing on the hormonal treatment should be OK. If it's bigger, I may need to break out the wigs again. The neighbor wants to come with me again to the 10/10 appointment and ask if I should get a lung biopsy or go for a second opinion at the National Cancer Center. She seems quite excited about being useful but I do have to be careful to give myself a little extra time to get the hospital and back without rushing her.
Today's good news:
1. I feel fine.
2. My last blood test results were fine and, in spite of my appearance, I have very low cholesterol.
