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.
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
Posted by Kathy on Saturday, December 16, 2006
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.
Posted by Kathy on Saturday, December 09, 2006
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.
Posted by Kathy on Wednesday, December 06, 2006
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.
Posted by Kathy on Monday, December 04, 2006
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.
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.
Posted by Kathy on Monday, December 04, 2006
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.
Posted by Kathy on Friday, November 24, 2006
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.
Posted by Kathy on Sunday, November 19, 2006
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...
Posted by Kathy on Sunday, November 19, 2006
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.
Posted by Kathy on Tuesday, November 14, 2006
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...
Posted by Kathy on Tuesday, November 07, 2006
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.
Posted by Kathy on Monday, October 30, 2006
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.
Posted by Kathy on Saturday, October 28, 2006
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. :-)
Posted by Kathy on Thursday, October 26, 2006
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.
Posted by Kathy on Thursday, October 19, 2006
Do you think I'll get a Nobel prize for proving that sound is actually faster than light?
Posted by Kathy on Tuesday, October 17, 2006
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...
Posted by Kathy on Tuesday, October 10, 2006
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).
Posted by Kathy on Sunday, October 08, 2006
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.
Posted by Kathy on Wednesday, September 27, 2006
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.
Posted by Kathy on Monday, September 11, 2006
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.
Posted by Kathy on Tuesday, September 05, 2006
My oncologist showed me the recent CT scan and mammogram results and there are no problems in my breasts. The spots detected in my right lung in the March CT scan have decreased in size during the remainder of my chemotherapy sessions (which doesn't necessarily mean they are cancer) and we will continue to monitor them. The next step now is more hormonal therapy to keep the estrogen down. My prescription is for one tablet a day of Fareston brand toremifene, which works like tamoxifen and attaches itself to estrogen hungry cancer cells before they can chow down on estrogen. I got a 35 day supply so I don't have to go back until September unless I have weird reactions to the drug. Hurray, a break!
Tomorrow M leaves for a three day trip to the beach on the other side of Tokyo Bay on the Chiba Peninsula with the entire sixth grade. N will be the new "Ichiban" while the usual ichiban, J, and the previous substitute, M, are away. M will return in time for this weekend's festival near our station and the annual apartment building summer dinner party in the lobby (sushi, tempura, sandwiches, yakitori, green edamame soybeans, watermelon and draft beer).
Today N and L, soon to be 9 and 7 respectively, are designing birthday cakes on our ample supply of recycled paper. N is thinking along the lines of a shaved ice cake with strawberry and Blue Hawaiian syrup shaped into a heart. We'll have to make and eat it very quickly before it turns into Kool-Aid. Her second choice is layers of melon and watermelon on a round cake. Hmmm.
For some reason, L wants a cake decorated to look like an eyeball. His second choice is a chocolate Japanese turd shaped cake (looks like a soft-serve vs. the American oblong images). The first choice may be easier to make; I can probably bake it in the small stainless steel mixing bowl. He's talking about frogs now as I type and we may be able to get away with a watermelon carved out to look like a frog with balls of melon and watermelon in its mouth...
Posted by Kathy on Tuesday, August 01, 2006
I've changed my profile picture to a three year old photo of me before my diagnosis. If I see this picture each time I post something on my blog, I hope it will inspire me to keep up with my diet. I've been a good girl all week! I'll try to post a picture of me with my silvery brown curls soon too. I have to take one first though.
I thought I felt slim so I went out and bought a bathroom scale only to find that I'm about 5 pounds heavier than I thought I'd been when I started dieting last week. At least my clothes are beginning to fit again, which does show progress from whatever I must have weighed last week. A lot of it might have been swelling, which has gone down now that I've stopped chemo. Now it's time to fight the fat!
Posted by Kathy on Saturday, July 29, 2006
The phone rang at a little after 11 a.m. on Friday morning, 24 and a half hours after J and I locked our door and headed out to catch the bus to Narita Airport. It was Mom and J confirming J's safe arrival at The Cottage. I passed the news on to an anxious S who then asked if J had access to a fax machine as he had additional homework that had been delivered by a classmate. Some summer vacation these kids get; they have loads of homework and then final exams about a week after they get back to school in September.
The elementary school assigns a little homework to keep the kids in the habit of sitting down and studying for 5 or 10 minutes a day but N sat down and did it all right after she got home from the last day of school on Thursday. A craft project and poster project are all that remain. All the children are expected turn in a list of the books they've read over the summer so I expect we'll be visiting the library a few times to restock.
I don't know if it's chemo brain or not but I have trouble concentrating and get very sleepy after about 20 pages of any book these days so I expect my supply of paperbacks to last all summer before I have to take them to a used book store to exchange for more. Without any treatments now, I get a little anxious about not doing anything to fight cancer so I've started a diet to get down to a less tiring weight. Self prescribed no sugar, low fat, lots of vegetables, lots of water and regular walking is the plan for now. The kids all had to taste my tunafish and tomato salad and there wasn't much left for me for lunch.
Posted by Kathy on Saturday, July 22, 2006
I've given so many blood samples in the past 6 months that the vein in the crook of my right arm is a little calloused and the technician needed to find a softer spot on the vein a little further down. No problem, I managed to rapidly fill his three test tubes and proceed to my oncologist's waiting area. When the results were in, I was called in to discuss how I've been since the last treatment. I said that I'd been a little more fatigued than before but that it could be from the 40 laps I'd done (overdone!) at the pool last Friday. Today's blood work showed I was on the anaemic side, but not enough to postpone treatment or even need additional medication. I'll be using more spinach and eggplant to see if this does anything. The white blood cell count was at its usual 3800 level, on the low end of normal (3,500 to 9,000) and more than enough to qualify for treatment so he set me up with my IV catheter. I asked about the Factor V Leiden (after finding the right Japanese words for the gene and protein involved) and the possibility of a connection with last year's blood clot due to "genetic resistance to effects of activated protein C" (straight off the internet). He seemed genuinely interested and wrote down what I said and said that he'd add it to the list of things to be tested when the rest of the bloodwork is done. He also scheduled me for a late morning mammogram and a lunchtime ultrasound right after my chemo and got me on the roster for a CT scan on the 25th. Results of these tests will be discussed on the 1st of August when we also talk about hormonal therapy options.
The nurses in the chemo room were their usual pleasant selves today. I brought a bag full for used paperback books that I had already read to pass on to a nurse whose husband is American. She and the other nurses and pharmacist congratulated me on the completion of the treatment and told me to stop in after the oncologist worked out the hormonal therapy routine so they could give me literature and advice too. Then I went down to the basement for my mammograms and ultrasound (breasts, chest in general and around my neck) which were uneventful although I could see the radiated portion was giving the technician a hard time. She marked a few 3 to 5 mm dark spots with her mouse and rechecked a few places more than others. I thought it looked "cloudier" all over than it did in last November's ultrasound. The technician won't discuss any results so I have to wait until August.
I didn't make it back in time to go to the Sayonara lunch party for a Japanese friend who has been co-leading the local English playgroup with another American friend but I did manage to meet them in the park near the station to give her a big good-bye hug. Her husband's job is taking them (her, a soon to be first grader boy and a pre-schooler boy) to the San Diego area in San Bernardino. I wonder where cousin Kathy is these days...
Posted by Kathy on Tuesday, July 11, 2006
After 10 days of observation with the plastic splint, the dentist has sculpted a porcelain cap onto J's front tooth and she no longer has a jagged smile. L, on the other hand, is missing both front teeth and is enjoying his gappy grin, pushing food out like a pasta press. J will keep the clear plastic splint a while longer (maybe even all summer) but she was able to eat corn on the cob (a gift from a neighbor) today without difficulty.
I've been a little groggy in the afternoon all week long but am not sure if this is from accumulated chemotherapy fatigue or because is just plain hot and humid. A 30 minute nap does wonders. I look forward to the end of treatment and hope the following tests show that I've beat the cancer.
Posted by Kathy on Sunday, July 02, 2006
The place we visited last summer is completely booked this year so S tried to find a similarly inexpensive vista for a 3 day retreat for those of us who won't be visiting Caz this summer. The conditions he had were too difficult for the local travel agent to work with (about $60 a day per person including meals, amusement and accommodations with air conditioning and a TV within a $20 per person round trip train fare radius of our home). He picked up a few pamphlets anyway and continued the search at home. He finally decided that he was expecting too much and raised the minimum.
We then searched the internet for camping, pools, amusement park and airconditioned in Japanese and kept getting the same place we visited last year. I added "Tokyo" to the search and we learned that the amusement park next door to the Tama Zoo, 20 minutes by train from here, has a "camping plan" with access to their waterpark, a passport for the amusement park rides, admittance to a hot springs bath, dinner, airconditioned lodges or trailers and pre-set tents. I called right away to ask about reservations but they were closed all week for maintenance. This afternoon I was able to reserve a lodge for 2 and a tent for 3 so it looks like we're in business. S appreciates the proximity, the kids are excited about the water slides and rides and I'm looking forward to the spa but it does seem a little decadent to stay overnight just 10 miles from home...
Posted by Kathy on Friday, June 23, 2006
The junior high school nurse called this morning. J slipped and broke her top left front tooth. I gave her the number of our dentist and arranged to meet them at the clinic right away. Classmates searched and found two pieces of tooth for the nurse to wrap in gauze and place in a small plastic case filled with water to bring to the dentist.
The dentist explained that the portion broken off was enamel but both front teeth were a little loose. The X-ray didn't show cracking and he couldn't evaluate possible nerve damage until the bruised gums firm up. He put a plastic splint on, anchoring the two loose middle teeth together and to the firm teeth on either side and recommended that any pressure to the teeth be avoided by cutting food into very small pieces and only using the back teeth until Friday, when he'll do more testing to see if a root canal may be necessary in addition to cementing the tooth back together or giving her a crown. He said that things look OK, but the worst case scenario is that the tooth may be lost. Aaaaaauugh!
J was well enough to return to school with the nurse and I went home to make a special lunch to take to her at school so she wouldn't have to worry about chomping into school lunch fare. She got half a cup of boiled broccoli (well chopped), teriyaki grilled tuna steak (chopped into 16 half inch cubes), rice topped half and half with a scrambled egg and some sauteed ground chicken flavored with soy sauce and sugar, a yogurt, almond-milk flavored Chinese jello cubes in fruit cocktail and a bottle of oolong tea. I even remembered to add a spoon.
I'm glad we were able to get her to our dentist quickly and hope that she doesn't have to lose the tooth. Oh my baby!!!
Posted by Kathy on Tuesday, June 20, 2006
I'll take J's passports and money to pay for her tickets to Grandma and Grandpa's this summer. S finally agreed to share her with them this summer and she is very excited about her trip. A few items from Lands End will soon arrive in her name at the Carriage House to supplement her wardrobe. ETA is Thursday evening, July 20. Departure is early Monday morning, August 28.
Posted by Kathy on Monday, June 19, 2006
Today was the first day of J's first ever mid-term exams and also her thirteenth birthday. She got a text message from a classmate on my cell phone this morning and was out the door, off for school at 7:45.
I went out the door with the elementary school group to catch the bus for the hospital. The little girl in L's class who lives downstairs and usually goes to school together was still in dreamland and her sleepy eyed mom answered the door (with this morning's paper still stuck in the slot), slightly panicking to see the usual group of escorts. I felt better about the few times we've overslept knowing that other people do too. It was decided that the group would go on and the mom would take her daughter a little later.
I said goodbye to the kids near the school and caught my bus for the third to the last chemo in this regimen. I decided to go scarf/hat/wig-less as it's humid and warm now and my hair, though short, is thick enough to hide my scalp. The nurses commented and laughed when I told them it's this year's summer trend. "Kathy - the Summer Version." I did wear silver earrings and a spoon ring (very unique in Japan).
The blood work was fine so the onco. set me up with an IV hook-up (3 pokes today, he needs practice.) and I advanced to the chemo room for a nice nap. I slept soundly for the duration of the drip and was home by noon to take J out for lunch as there are no school lunches on exam days.
Some of J's friends came over for cake (13 individual portions of quadruple berry tiramisu made by N, L and me last night). The younger siblings went on a shopping expedition to find a gift so J could enjoy the time with her friends without interference. I gave her the most recent Harry Potter book in Japanese (the translated version only came out last month) but she is waiting until tomorrow afternoon, after the mid-terms are finished, to open it, when she won't have to concentrate on social studies or memorizing the English textbook word for word.
Posted by Kathy on Tuesday, June 13, 2006
The kids excitedly prepared a card for S and gave it to him with a new summer shirt for Fathers' Day. Then we figured out that Fathers' Day isn't until next Sunday. Ooops.
We had a surprise visit from S's eldest brother this morning. He has three elder brothers and this was the first time the children and I have met this one. S has been avoiding him for more than 20 years (longer than I've known S) so he stayed in his room most of the time leaving the entertaining up to us after a gruff welcome of "Why are you here!?". The reply was a simple, non-confrontational "I was in Tokyo for a class reunion and wanted to see you all." Nine years ago, when another brother called from the station, S ran out the door to rent a car and take us all on a day trip to Mt. Fuji to avoid the brother who arrived just as we were packing the car. "Sorry, we're on our way out, we'll give you a ride back to the station." So staying home this time seems to be a big step for S.
This brother was a pleasant enough guest, bringing cake, showing pictures of his grandchildren on his cell phone, playing with the kids and staying for about an hour before catching the bus to Haneda Airport to fly home. He looks like S would look like if S were a politician; better nourished, shorter hair, sharp attitude. He seemed a little sad but not angry at S's reception and apologized to me for any discomfort his sudden visit may have caused saying that S's reaction to the visit was a product of the environment when they were growing up.
I did notice that the brother's hand motions were a little lethargic, much like S's. S says his hands and arms seem to be numb a lot but hasn't offered any medical reasons (MS? Diabetes?) in spite of consulting several local physicians. The other two brothers didn't seem to have any trouble when I last saw them so it isn't all four of them. Hmmm.
As S's health deteriorates, my memory is flailing. I rushed off to the local supermarket to get some evening bargains on Friday and managed to forget to bring home a whole bag of groceries. I only noticed that I had forgotten when I couldn't find the squid I'd bought for S's dinner and racked my brain to remember when I'd seen it last. One of those "Duh!" moments.
At least today I can't remember forgetting anything....I'm blaming the Father's Day fiasco on our Japanese calendar.
Posted by Kathy on Sunday, June 11, 2006
J had a day off yesterday to make up for the rainy Saturday she spent at school in classes (as opposed to enjoying the annual sports day which has been postponed until tomorrow or Thursday, weather permitting). Having outgrown all the hand-me-downs from her Kyushu cousins and a few other friends, she was happy to qualify for some new clothes. Taking the chance while we had it, we sent the younger siblings off to elementary school to train for their sports day (next Saturday) and we invited a 7th grade friend to join us to shop in Sengawa, where I used to live in my single days. We biked over and enjoyed banana mocha frappuchinos before shopping. The friend was glad to help J choose a few tops and bottoms and they both seemed to enjoy time away from their younger siblings. We went to an inexpensive pasta place for lunch to top off our "Ladies' Day Out." So much nicer than McD's and happy meals.
I had the ninth of twelve chemo treatments today and just missed the bus for my neighborhood. The next bus was bound for Sengawa so I took a detour and had coffee at a fairly new cafe which has facilities for live performances. Some of the performances are free, others are quite upscale ($40 cover charge). A trio with a tenor sax which recently played in a larger group at the Blue Note Tokyo will perform for three evenings in June. I move away and look what happens to the neighborood!
Only 2, 4, 6 weeks to go until the treatments are finished and I won't have any excuses for meandering. Then it's a few tests and continued vigilance.
Posted by Kathy on Tuesday, May 30, 2006
Hey, I just learned that the toilet-top sink in which oldest and youngest brothers have shown interest is now available in the U.S.
Recent technical difficulties have resulted in extra toilet cleaning duties in Tokyo. I've had to remove and dismantle the entire seat and lid several times in the past week to thoroughly clean up after a certain six year old with poor aim. I wish I could just flush the whole room.
Posted by Kathy on Tuesday, May 23, 2006
Posted by Kathy on Tuesday, May 23, 2006
The mother of one of L's classmates told me that her daughter had exclaimed that L is a very fast runner because he's always running away from the girls who chase him...
Posted by Kathy on Monday, May 22, 2006
L and N participated in this year's elementary school Sumo tournament at the local shrine. L beat three other kids but lost his chance to be in the semi-finals in his fourth match. N was a little shy about pushing someone other than a sibling around and was dragged and pushed around and finally out of the ring in her only match. She seemed to have fun anyway, not wanting to come home for ice cream because it was more fun to help the high school girls hand out consolation priizes. The high school girls didn't mind and even asked her to pose with them for a few photos. This was the last year that M could have wrestled but she was too embarrased to sign up. There were only two sixth grade girls, so she could have had at least a bronze medal. She had fun cheering for L and his friends in the morning and spent the rest of the day with friends in the park. I broke out the sunscreen for the day outside, not wanting to burn (or even tan) in the sunshine. My oncologist has advised against overexposure to sunlight while getting chemotherapy and I can't wear long sleeves in the humid heat of Tokyo's summers. The wig is a little uncomfortable in the heat too, but I now have about a half of an inch of hair so I may be able to get away with a very short summer hairstyle.
Posted by Kathy on Sunday, May 21, 2006
The annual Mothers Day Children's Festival was lots of fun for the younger 2 children. They each had their own agenda so I sat on a bench while they wandered around making carnations out of gingham cloth scraps or red tissue paper, playing games and walking through a haunted house sponsored by the local Junior Leaders group. M attended the event with friends from her class. The plan was to go for an hour or two in the morning and come home for lunch but I had to call J and ask her to make ramen for S and herself as N and L weren't ready to go home yet. We ended up staying until the very end at 4 p.m. and stopping by the supermarket to pick up a bag of rice as I used the very last grain for breakfast. I couldn't buy much else as L was in the childseat, where I usually put most of the groceries.
Posted by Kathy on Sunday, May 14, 2006
Okay, so I've been slow to update the blog. I've been a little busy attending parents' meetings for each of the children's new classes and cleaning up and handing over files to this year's school district neighborhood safety committee and our building's next management committee treasurer. After the annual owners' meeting on May 21st, my treasurer duties will be a thing of the past. I managed to avoid being selected for any school, building or neighborhood committees this year (April to April) although a few of the moms in J's class kept looking at me with hopes that I'd volunteer for one of the jr. high school PTA committees. I apologized to the PTA VP who presided over the class meeting (her daughter went to kindergarten with J and I've been on committees with her in the past, so she had been hoping I'd jump on board this year) and explained about my ongoing treatment. She hadn't heard and she was very understanding and sympathetic.
On Saturday April 15, I handed over the reins of the elementary school district neighborhood safety committee to the new leader of our quarter of the district and came home to quickly make lunch and a big pot of curry for the kids to eat for dinner while I went out with some moms from the former kindergarten graduation committee to see the Japanese version of the Broadway production of Disney's Lion King. One of the moms had purchased reserved seating tickets for that day way back in November so staying well so I could go with the group had been a goal for me. Before I could make lunch, S suggested that I take the kids to the fairly new Thai/Indonesian/Indian restaurant down the street for their lunch buffet. Curry for lunch, curry for dinner. There were no complaints as they all like curry and the restaurant has very good naan.
S was a little surprised when I got dressed up and walked out the door a little before 3 to meet my friends and proceed downtown for the 5p.m. show. The show was impressive, especially from our seats in the sixth row. It was long though, so I came right home afterward instead of going out for dinner with the "girls" when we returned to our neighborhood a little before 10 p.m. as I hadn't left anything (other than curry) for S to eat or drink after his classes finished at 10. He seemed surprised again that I was home before he was.
The Tuesday after that was my 2nd Docetaxel chemo session which went as well as the first. Only six more to go, five after tomorrow. The kids have a 5 day weekend coming up so I hope that tomorrow's treatment goes as well as the first two.
(A quick spelling check revealed that "blog" is not in the Microsoft dictionary...)
Posted by Kathy on Monday, May 01, 2006
Posted by Kathy on Thursday, April 13, 2006
L skipped and danced all the way to school for his entrance ceremony today and sang along very loudly with the second graders when they sang their welcome song because he knew and liked the song. The teachers got a kick out of the extra voice competing enthusiastically with the second graders. The school mark has been sewn on to the yellow hat the first graders wear to and from school and we've written his name on every item he'll be taking to school in his black school backpack tomorrow. He volunteered to take an early bath, brushed his teeth without being asked to and set out his clothes for tomorrow. Now I need to find a handkerchief (the schools don't have paper towels or air dryers so the kids use their own handkerchieves to dry their hands after washing) that isn't flowery and pink for his pocket...why do we have a drawer full of Hello Kitty handkerchiefs and only a single dinosaur handkerchief?
Tomorrow J has her jr. high school debut so I can wear the same outfit again. She'll wear her uniform. I doubt that she'll skip and dance but she does seem a little excited. Time to get some lights out before any second winds hit and the kids never get to sleep.
Posted by Kathy on Thursday, April 06, 2006
The CEF part of my chemo regimen finished 3 weeks ago and I went yesterday for the first of 8 Docetaxel treatments which will be on a 2 week cycle.
I had to wait an hour or so while the morning blood test was processed and then my doctor called me in to discuss the results as well as the results from last Friday's CT scan. The chest x-ray they took just before the scan didn't show anything unusual but he did find a suspicious spot on/in my lower right lung which warrants observation (it's about 1cm) and another "abnormality which is probably nothing" (his words translated into English) on/in the left lung. I'll have last spring's CT scan results from another clinic sent to him for comparing (but I think something would have been said about any abnormalities back then...). I'll have anoth CT scan in 16 or 18 weeks after the chemo is finished.
I asked if it could be pneumonia or other virus symptoms (although I feel fine) and, for the left lung, a reaction to the radiation treatments, but he told me no (I figured the left spot was lower down than the radiated area, but who knows?) so I'm just waiting and hoping that if it is metastasis, the remaining chemo will pulverize it all and send it on its way.
The good news is that the lymph nodes all looked great after radiation and half of my chemo treatments.
I also got to see a bunch of friends from the Chofu English Playgroup who were having a picnic under the cherry blossoms in the park near my house when I got back from the hospital early yesterday afternoon. They all gave me my month's worth of hugs and well wishes.
Posted by Kathy on Wednesday, April 05, 2006
L and his dictionary.
L couldn't wait to open his graduation gift from the PTA. The three previous graduates received the same dictionary so when I was VP of the PTA I got together with the other moms and proposed that we update the selection to an easier to read, more fun version. This year's PTA liked our selection so now we don't have four copies of the same dictionary.
L graduated from kindergarten on the 17th and J's elementary school graduation was held on the 24th so we are well into spring break. The cherry trees in the park near our house bloomed yesterday morning and will probably shed their petals in tomorrow's predicted rain so we're going to spend the afternoon there today.
Yesterday I left a pot of curry for S and the kids to eat with rice from the rice cooker for lunch so I could take the train downtown and meet two very pleasant women from Caz for a morning strolling through the Meiji Shrine compound and gardens. It was very enjoyable to get out and about. I even got to do a little shopping in Harajuku as I didn't have 4 kids to worry about in the spring break crowds of young people shopping for the latest fads and fashions. My purchases? Two handkerchieves from the Japanese equivalent of a Dollar shop.
Well, I had the last of the "debilitating" CEF chemo treatments on Tuesday and am still glad that they haven't been debilitating. In three weeks I start the second half of the regime, 8 sessions of Docetaxel, once every 2 weeks. I danced successfully on stage with 15 other moms in front of 65 6 yr olds, 49 moms and 20 teachers and staff from the kindergarten at the formal pre-graduation "Appreciation Ceremony" and didn't lose my wig. L's graduation is tomorrow morning.
S's brother and his wife will be in Tokyo from Sunday to Tuesday to visit their son and his family. The son and his wife were here with their son to help out at the "Welcome to Japan" Intercollegiate Judo Tournament, Rice Dumpling and Japanese Drum Extravaganza. Now they have a 3 year old daughter and a 6 month old daughter in addition to their 6 yr old son. On Sunday afternoon we'll visit them with banana bread (exotic food baked by the foreign wife) to say hi to the in-laws from Kyushuu and probably treat everybody to dinner in an inexpensive restaurant as we couldn't possibly all fit in the nephew's apartment. I'm hoping for good weather so the kids can all play in the park in front of the nephew's place.
Posted by Kathy on Thursday, March 16, 2006
L is down to his last two weeks of kindergarten and J, her last three weeks of elementary school. I've been practising a song and dance routine with some of the other moms for the kindergarten early evening pre-graduation formal party and have dug out the proper shoes from the back of the closet for my fancy purple dress. I hope it isn't too cold because my down jacket definitely clashes. In a pinch, I guess I could wear the gold lamee and sparkly brocade outfit which is warmer. Then I'd have to dig around for more shoes...aaugh!
A foreign wife friend called to invite me to first dibs on a pile of practically brand new clothes before she took them to an international church in Tokyo for their annual bazaar. She likes the same colors I do and is my height (or a little taller as she has excellent posture) and size so I really lucked out. I came home with a large shopping bag of clothes appropriate for the upcoming graduations and entrance ceremonies. This is good because, as a representative of the building management committee and a member of the local town planning association I received an official invitation to sit in the "VIP" section instead of with the riff-raff - er- other parents. I will probably sit with the riff raff anyway because none of the other VIPs will have 6 and 8 year olds with them and S will be busy videotaping and may not be able to handle the hyperactive duo. M, as a 5th grader, will be assisting at the function, probably playing music on her recorder.
Posted by Kathy on Monday, March 06, 2006
I have been lavishly spoiled this past week with presents from friends. A friend from English Playgroup days knitted me a beautiful cotton hat for spring in a denim and cream color. She confided that I was the first person outside of her family to receive one of her creations and I felt very special. Tuesday at my 3rd chemotherapy session, the nurse gave me a set of aromatic candles and incense to encourage me to relax. I'd given her some books to pass on to her American husband and she wanted to thank me.
Today, after a morning practice session dancing with some of the other moms of L's classmates to remember our routine for this year's graduation party entertainment, I met the current leader of the English play group and her soon to be 2 year old son for lunch. She brought a lovely bag of treats including organic coffee, an electric latte whipper, some vanilla syrup to flavor my lattes, camomille tea, cookies and Italian hazelnut chocolates and told me to pamper myself.
Tuesday's session went without any problems. I'd been worried about some swollen veins but the swelling was down and the damage wasn't permanent. Blood tests were OK and I was given the A.O.K. for the chemotherapy drip and home by lunchtime. I was very careful to take the anti-nausea meds as soon as I got home instead of waiting until dinnertime and I rested all afternoon and evening but returned to my normal energy level by Wednesday.
My next appointment is Tuesday, March 14th. That will be the last of the first type of chemo and after that the second type will be administered every 2 weeks for an additional 8 treatments. Apparently the type I've been getting is more debilitating than the second type, and the nurses were cheering me on about making it this far. I feel I've been very lucky regarding side effects (or rather lack of them) though.
Now I have to start looking in the toybox for the Minnie Mouse ears I'll need for the graduation party dance routine...and hope they fit over my wig.
Oh, I almost forgot the best part of the day. The election committee for the apartment management board came by to ask me to sign on for another 2 year term but I heard them coming in the hall and answered the door without a wig or a hat. They graciously accepted my resignation due to obvious health concerns and I finish my term on schedule at the end of March. Now I'd better get the books in order to pass on to the next treasurer.
Posted by Kathy on Thursday, February 23, 2006
The 2nd chemo treatment went OK on Tuesday morning, but I messed up a little with the timing of the anti-nausea pills and got sick in the evening. A good night's sleep, rest the next day and careful timing of the pills after that worked and I was able to teach my Wednesday evening classes. I biked around doing errands today and feel fine.
Mrs. Y came over and took me and the kids out for dinner at the local "family restaraunt" (similar to Denny's) while S was out teaching. The kids were their usual overly energetic selves so I was glad we had seating in the back corner of the non-smoking section (they still have them in Japan)away from most of the other diners. It'll be a few years before I dare take them to any upscale places to eat (Image: feeding frenzy). Mrs. Y, of course, was perfectly mannered and pleasant company. She encouraged everyone to order and eat all sorts of food so we are all now extremely full. Thank you Mrs. Y, we were very glad to see you today.
Posted by Kathy on Thursday, February 02, 2006
Well, the antibiotics did their stuff and I'm feeling pretty normal this evening. Today is day one of half a year of "NO MORE BAD HAIR DAYS" as I shaved the rest of my hair off with our electric razor and a little help from 12 yr old J. It wasn't a very close shave so the younger three decided to have fun plastering my head with cloth tape and peeling it and lots of stubble right off. It is very refreshing. All that hair goes out in tomorrow's trash.
Posted by Kathy on Sunday, January 29, 2006
I'm taking antibiotics for 3 days to get rid of a low grade fever and sniffles before Tuesday's chemotherapy. Otherwise, I feel fine.
I took N and L to storytime and origami lessons at the elementary school this morning where the pleasant old woman teaching complimented L on his wonderful Japanese. He listened carefully and managed to do fairly well with the origami too.
Posted by Kathy on Saturday, January 28, 2006
Posted by Kathy on Thursday, January 26, 2006
Per the schedule the chemo doc gave me two weeks ago, my hair started coming out in gobs this morning. I wear a hat when cooking so nobody gets hair in their food. Refreshingly weird indication the chemo is working.
Off to classes this evening.
Posted by Kathy on Wednesday, January 25, 2006
The girls were happy about the snow we had on Saturday. There was enough to build snowmen. L went to kindergarten in the morning and played in the snow with his friends. He got out half an hour early as the kindergarten was worried about driving the kids home in the snow. The girls went to various friends' houses for the day so L was the only child home at lunchtime.
After hot udon noodles for lunch, S and L played word games in S's futon for a while. L asked for hot cocoa but suddenly started complaining of great abdominal pain before he could drink it. I made him go sit on the toilet for a while with no results. He cried and moaned that he didn't want to die but that he was going to die and made quite a production of his pain. I decided that maybe I should take him to the hospital to have the pediatrician check him out in case he swallowed something strange. I bundled him up and put him on the back seat of the bike to cycle through the snow to the only place that was open on a Saturday afternoon. He fell asleep waiting and was still in pain when his turn came up and the doctor examined him. She decided he should have x-rays and sent us upstairs to the x-ray room. L was quite excited by the fancy machines and cooperated with the technician who sent us back downstairs with our film five minutes later.
The doctor looked carefully and announced that yes, he is constipated. If things didn't begin moving on their own by Sunday, we should give him an enema. Thank you and goodbye. L asked for a drink from the vending machine in the lobby so I made a deal that he go to the bathroom first. He decided to forgo the ladies' room and venture solo into the men's room. He took his time and when he finally exitted the men's room, he proudly announced to the 30 or 40 people in the lobby that he'd just had the biggest BM in the world and that the toilets have butt washers like the place where we stayed last summer! Fortunately his doctors' visits are free until he starts elementary school or I would have been a little disappointed at the costly trip to the fancy toilet.
Posted by Kathy on Tuesday, January 24, 2006
It was an uneventful week. I had a blood test on Wednesday and things are as expected. The doctor and chemo room nurse were surprised that I was relatively unaffected by the treatment regarding fatigue. The anti-nausea medications worked well and I never felt ill. The doctor prescribed some antibiotics for me to take if and when I get a fever as my white blood cell count is lower than usual (as expected). I assume that the fatigue and other effects are cumulative and that I won't be so lucky all the time but was relieved that I felt as well as I did. Whew!
Thursday evening L, N and I went to a curry rice dinner party for N's 2nd grade class and had a good time while M and J relaxed at home enjoying big girl time. We expect a couple of inches of snow tomorrow so I guess I should go dig out some more gloves so we can all go out and play.
Posted by Kathy on Friday, January 20, 2006
The girls went to school and L went to kindergarten this morning. The elementery school annual rice dumpling festival was today. The head of the committee invited foreign students from the nearby national university to help pound 90 kilograms (198 lbs, probably doubled in weight after steaming) of steamed sticky rice into gooey glutinous dumplings to feed the 550 or so elementary school students. I was also invited to speak a little aboout holiday customs in my country. S dedcided that I would be too busy to go and approached the chairperson to ask if he could go in my place, bringing a few university judo team students and one of our adult English students to help in the manpower department. They were glad for the extra help and I got out of going.
To thank the judo students for their help, he invited them here for lunch, so I spent the time I would have been standing around at school cleaning and cutting chinese bokchoy cabbage, shiitake and other mushrooms, tofu and other items (can't find what some of them are in English) so they could have "cook-at-the-table" miso based soup (o-nabe) I also put some already cut sashimi on a nice plate and cooked a big batch of rice. After they arrived and started eating, I went to get L at his bus stop. The girls arrived home already full from all the rice dumplings and didn't need lunch. From the dirty bowls they brought home, I see M liked the red bean paste topping, J liked the yellow powdered soy bean topping and N liked soy sauce and nori (flaky seaweed). I left the dishes to soak and told S I'd be off to the hospital. He asked when I'd be back and seemed surprised when I said that it might be around 6 p.m. because I'd be having an I.V. Our adult English student was nice enough to stay and play with the kids, even taking them to the park for a while.
I took the bus to the hospital and arrived in time for my 2 p.m. appointment only to be kept waiting until 3 as it was a busy day. The doctor apologized and then took his time to carefully explain the regimen and the medications before setting me up for my I.V. and sending me on my way around the corner on the same floor to the outpatient chemotherapy clinic. The in-clinic pharmacist and nurses gave me the same explanations again and got me started.
Kytril (anti nausea) + 100ml saline solution - 20 mins
Decadron (steroid, anti nausea) + Epirubicin + 100ml 5% glucose
solution - 20 mins
Cyclophosphamide + Fluorouracil (5FU) + Solita-T3 (rehydration
solution) - 60 mins
and a final vein flushing of 100ml 5% saline
solution - 5 mins.
I was given metoclopramide (3 times a day for 5 days), Zofran (once a day for 5 days) and Decadron (8 tiny tablets 3 times a day for 3 days) to ward off nausea and was told to take the first Zofran tonight.(Done!)
So far, so good. A friend sent a text message to my cell phone asking when and how I'd be going home and offered to pick me up in the evening so I had an unexpected ride home. She said too call next time too, because although I might feel fine, it is better not to be on my own on the bus. Her dad had chemo a few years ago (he's fine now) and she is very sympathetic.
When I arrived home, S and J had gone to our school for tonight's lessons and our adult English student was sitting with the younger kids, covered with mittens and gloves, attached by clothespin, and playing picture drawing games. He may have been a bulldog in a former life; he is everso patient with the kids.
Dinner for the kids was leftover o-nabe from lunch with chinese ramen noodles added. Nobody complained as they didn't eat it the first time around anyway. I had some too and feel fine. The doctor and nurses tell me that the next few days may be trying. Maybe S can due crossing guard duty for me (it's our turn) and go to L's kindergarten class new year's party tomorrow morning. Then again, maybe I'll be fine and can at least go to the party...
Posted by Kathy on Tuesday, January 10, 2006
Posted by Kathy on Saturday, January 07, 2006
We had a fun and busy week while the nieces were here last week. The kids went to the newest Harry Potter movie with their cousins one day, we all went to Tokyo Tower the next and then the nieces ventured off on their own for a day of window shopping at a popular new site on the other side of Tokyo.
On the 31st the little old lady from the 3rd floor stopped by with some New Year's money for my kids while I was out shopping and S invited her in for tea. She stayed long after I returned with the groceries and watched while I chopped vegetables for our "grill it yourself monja yaki on the hotplate" lunch, happier to be here with 6 young girls and L than alone at home. She declined a lunch invitation, not being fond of the menu but did accept some red bean paste filled snacks to take home for later.
After lunch, the girls suddenly decided they'd like to go ice skating and L chimed in that he'd like to go, so I had to get ready and go too as he and N are a little too much to burden the older girls with for the long train rides and rental skate selection etc. Our septuagenarian visitor happily said farewell and returned to her apartment as we made our way out the door.
Halfway to the station the 14 yr old niece decided that she was too tired and cold to go and returned to sleep all day to shake off an oncoming cold. She had been a little depressed that her plans to return home earlier than her sisters and have fun with friends on New Year's Eve had been impossible due to several million people already having reservations on trains, planes and buses going out of Tokyo for the annual New Year's trek to their hometowns. She kept in touch with the friends on her cellphone, texting and talking and did manage to be pleasant and kind to her little Tokyo cousins, taking and sending lots of pictures with her phone. S's sister called and complimented me on how big the kids were, so I guess some of the pictures must have been sent to her phone too. She also thanked me for keeping her daughters for the week, especially the 14 yr old, half of whose friends were picked up by the police on New Year's Eve for disorderly conduct, if SIL is to be believed.
Anyway, back to the Ice Capades. We arrived a little after 3p.m. and learned that the rink would close at 5 that day so we rushed to rent and lace all my kids into their skates. J, N and L had been skating once before and managed to do quite well while M, expecting it to be as easy as it looks on TV, especially with her natural prowess, was greatly surprised. After about an hour of screeching and laughing hysterically each time she fell (about every 30 seconds) she finally learned to relax a little and glide. The 18 and 19 yr old nieces did fairly well, having skated a few times before in Kyushu. Their main problem was my kids running into them or grabbing them for support. All were impressed by my grace on ice (ha! I still skate like a hockey player!), not expecting an older, larger person to be able to skate at all... I was the only member of the group with no bruises or aches after our 2 hours of skating.
Returning home, I rushed around making the New Year's food for the next day while S and the 7 kids watched special New Year's Eve TV shows and ate special buckwheat noodles to celebrate the changeover to the new year. We all walked to the nearest Shinto shrine to wish for good luck this year at midnight and say happy new year to the neighbors who were all doing the same thing.
After breakfast of the traditional food I'd made the day before with some hot chicken/bonito soup with rice dumplings, S told us we should go have fun at the local karaoke place. There was a "all-you-can-drink" soft drinks plus karaoke for a set fee so we all guzzled soft drinks (well, I had a few cocktails too...) and sang for close to 4 hours. L was in seventh heaven with so much soda. We returned home around 5 to collect luggage and head out for dinner before sending the nieces on into Shinjuku for their bus back to Kyushu. S wondered if other diners thought that all 7 were ours as there are similarities.
At the station, M managed bravely not to cry but the dam broke on the way home. L started to cry at bedtime, realizing the kind cousins had gone. N was happy to have a chance to sleep in the new futons I'd bought the day before the cousins arrived and J was just happy to sleep at all after such non-stop activity.
It sure seems quiet now.
Posted by Kathy on Tuesday, January 03, 2006