Good News

After I had my CT scan last Tuesday, I'd put it out of my mind as I didn't want to worry myself sick waiting for the results. I did such a good job that I forgot completely until I walked in to see my doctor yesterday morning and he was clicking around on his computer to bring the images up for our discussion. The CT scan results (which are much more accurate than an x-ray) showed that, while not dramatically, the Navelbine was helping to shrink the tumors. The three biggest tumors shrunk a few millimeters each. This means that I can keep my new silvery grey wig in its box for a while as the Taxotere should be saved for when I need more dramatic results. I forgot to ask my Dr. exactly how much more Taxotere I can have before it is either ineffective or is more trouble than the cancer it fights. That can wait until next time. I ended up going back on Navelbine after the three week break from chemo so I was a little tired today, but more energetic than past post-Navelbine days because of the break and, probably, the good news.

The Dr. did encourage me to continue with the hospice preparations as the hospice certified place will need him to send them my records and a request to have them see me before I actually go see them. There aren't many hospice certified hospitals in Japan but I found one on the list which is not too far away and which has a good network of qualified professionals who can do home visits to assist with the home-hospice option instead of or during the apparently long wait for a bed in the hospice ward itself. My downstairs neighbor's former student used to work at the big general hospital where the hospice ward is so she called the woman and got the low down on whom we should ask for and what to expect. We'll probably go on a tour or my first consultation together in January.


Future Plans

M and I had a productive day on Sunday, going to a high school guidance fair to see a huge variety of public schools so she could start thinking about what she wants to do and where she should go to high school to get the most out of those years. It's a lot like choosing a college. She is so different from J so the same schools J was looking at were not inspiring to her, but now she seems excited at the prospect of high school and beyond. We've signed up to visit a few of these schools later this year.

My neighbor and I went in to the cancer center this morning and I was glad to hear that my heart scans from Friday were fine and that I could get my usual dose of Herceptin today. Dr. F. asked how I'd fared with my counselor last week and if I would like to use that counselor as my regular contact at the social services counter. He encouraged me to continue researching and gradually making plans and to make my preferences regarding various aspects of medical and other care known to the counselor so she can help make things happen should the need arise. Planning is not really a problem as I figure I can amend plans as conditions change; who knows what my preferences will be when I'm ninety?

I had a CT scan right after my visit with Dr. F. and then had my treatment. My downstairs neighbor had her consultation with Dr. F. and met me in the chemo room to sit and talk before we headed off to the fish market to try a new sushi shop and then walk off lunch in the market. Next week I start Taxotere again, when I see the CT scan results.

The rest of this week is filled with teaching, a lunch with some Japanese friends and the biannual elementary drama festival which is always something the kids are so proud to do with their entire grade. L and his friend from downstairs are giving me a preview, acting all the the other kids' parts to practice as I type. L and N have Monday off as a consequence of their Saturday performances. The immediate plans for the future are to bake cookies on Monday.


Almost Time for the Kotatsu

What's a kotatsu? It's what the kids are begging me to set up and the reason we have to move our furniture around and put the dining room table into storage. A low table equipped with a heater and some blankets is all they need for a snuggly, comfy winter. Well, they also say they need lots of mikans (Japanese tangerines) to peel and nibble while they become the Japanese equivalent of couch potatoes until spring. It's incentive enough to get them to help with the cleaning anyway.

I had a different technician than usual for today's heart scan and she wouldn't share any comments other than that I'll be able to discuss the results next Tuesday when I see Dr. F again before my CT scan. I was assigned a social worker at the support counter and we spoke for about half an hour about my concerns and specific needs. Not much of the information was new, but I did get some good literature that will make explanations to S a little smoother.

I spoke with my 77 year old medical mentor downstairs this evening. She has connections with medical facilities all over Tokyo and a good grasp of what it good and what to avoid. It turns out that she has started gathering the same kind of information and that I may be able to help her a bit. We'll both go to the counselor on Tuesday as we're looking for a home hospice oriented clinic near our apartment house and not just the usual simple home nurse type service which she has already been using for the past decade for simple check-ups from time to time.

A friend and supporter has reminded me of some simple meal services that might be useful in getting the kids to learn and enjoy a little cooking. Ingredients for meals are delivered already measured out or chopped with instructions on how to finish cooking the meal. It's cheaper than ordering completely prepared meals and the meal plans are well balanced. It should be fun to try these once in a while and let the kids cook meals with minimum fuss. I'd heard of these services before but was very grateful for the reminder.


The Talk and a really strange toilet experience...

I was expecting this talk sooner or later and today was the day. I nursed a cold all weekend and although I feel better now, I still have laryngitis. I went in for my usual pretreatment blood draw plus an x-ray to see how the Navelbine is working and the Navelbine is now applying for unemployment. The spots in my lungs have grown in spite of the continued Herceptin and Navelbine and my heart seemed a little enlarged in today's x-ray so I had no treatment today (which was the bonus, a day off!).

While giving me a very thorough exam and checking to see how much oxygen was circulating with one of those finger sensors (plenty, he was glad to report) he gently approached the subject of palliative care and end-of-life preparations. He wanted to know if I'd made any special considerations and stressed that he wants me to have quality time while I'm around and that as I'm not showing any symptoms of the lung tumors (like palpitations or getting out of breath easily) that now might be a good time to work on my Bucket List.

He asked about the home situation and listened while I explained about how much support at home I could expect from past experiences (um, not much) and then insisted on walking me down to the counseling and welfare coordination office to introduce me, hand them my file and explain a little about the complications that he hopes they can work out for me. Then he asked them to get as much info together for me about palliative care and hospices, in hospitals or at home with home nursing etc. and financial aid for a discussion on Friday, when I also have an appointment for another heart scan (looks like it's sayonara to Herceptin for a while).

Next Tuesday I'll have a CT scan to get a better look at the situation. It was very sweet of him to do that for me instead of just telling me to stop by there on my way out. Probably as an apology that Tykerb is still in the pipeline and won't be approved in Japan until spring at least (I'd been hearing "this winter" until today.

I had a British friend with me today and she was a little worried when she saw my oncologist escort me to the counseling place, but gave me real big hug when I explained what had gone down. Then we went out and laughed in death's face by indulging in steak for lunch and an evil dessert (which we split and still couldn't finish) with some restaurant vouchers I'd won from a magazine before heading home. Now it's back to broccoli, squash, carrots and brown rice for me. The restaurant had fully automated toilets; I walked into the stall, closed the door behind me and the toilet lid whirred and raised itself, making me jump a bit before bursting into laughter (me laughing, not the toilet).

Home for a nap (no treatment, too much lunch!) and then online to check for local resources again and update my files so I can have a list of questions for my Friday session. PLEASE FEEL FREE TO TOSS IN SOME SUGGESTIONS HERE ABOUT WHAT I SHOULD BE ASKING REGARDING HOME CARE ETC.I'm sure some of the stuff will be a little culturally different than for Hospice in the U.S. and it'll be interesting to see what the deal is here. One of my seasonal survivors' lunch friends can help with info as she has National Hospice Association connections.

Anyway, I have some goals bumping around in my brain:

1. Accept that I'm not just letting go and living in anger or despair,but choosing to enjoy as much quality time as possible and live positively until the end.

2. Get over this grief!

3. Get as much info on hospice and palliative care in Japan as possible from NCI, the Internet, friends etc.(I already found a Home Nursing Station that offers end of life care that's in our neighborhood to deal with medical things and will ask around and see how the people in our building have felt about them in past cases)

4. Prepare husband and kids - This is a bit of a monumental task, but a few baby steps at a time are fine.


Looks like I'll go back on Taxotere for a few more rounds from Nov. 18 or 25 as it was effective in the past, and then when the limit is reached, take a break from treatments and let my body recuperate while I have as much fun as I can with my kids and watch and wait.

And here I was thinking I should go get a trim. Maybe I'll get curls again the next time I get hair. Shall we take bets?


It's been a while

I've been having trouble organizing everyone's schedules these days and we haven't done much as a family lately. I decided to let the children decide about whether or not to go to this year's neighborhood sports day and kept quiet about it beforehand. If they really want to go, I thought, they'll talk about getting ready and make plans. On the day of the event, I was up early, but the kids all slept in until well after the event started. So, this year I didn't need to make a fancy three tiered lunchbox. Nobody complained. Halloween sort of went the same way this year, as the kids who might have enjoyed it most were too busy with their friends to notice or ask about doing anything special. They did play with some costumes with their friends and have a little candy and mandarin oranges, but we didn't have any parties, do any decorating or do any trick-or-treating. I did serve pumpkin soup for dinner at least, although I'm not sure if anybody really got it. I feel like such a Grinch some days.

Recently, I substituted for another American at an English conversation class with some very lovely ladies who've been studying regularly together for the past 25 years. They all love to laugh and the lessons have been great fun. The regular teacher has contacted me about taking over permanently as he will be too busy for the semi-monthly sessions. The ladies are sharp and full of fun and information, so I'm looking forward to these classes.

Plans for this month include a Thanksgiving buffet at the New Sanno Hotel, a U.S. military run facility downtown. A neighbor here knows the head chef and can get is reservations. It will be right after my Thursday morning classes with the aforementioned lovely ladies so I'll be a bit rushed to get from point A to point B in time but I expect it will be worth it. The kids have school that day but the will accompany me a few days later to a belated Thanksgiving potluck at an American friend's place. Double turkey and trimmings! Whoo hooo!

This weekend I've been dealing with a bout of the common cold which seems worse than ever probably because I never used to catch colds (or if I did, they didn't slow me down). Plans are to sleep in all day tomorrow and be better by Tuesday morning for another blast at the immune system. I'll get an x-ray to monitor (hopefully) progress of the treatment. Knock on wood.