Back On Line

After a week of no computer time due to a broken AC adaptor, the local electronics shop finally called to tell me the new one they had ordered had arrived and was waiting to be picked up. So, here I am again.

The neighborhood autumn festival was last weekend. L and N helped pull a big drum and carry a portable shrine up and down the street in exchange for a large package of snack food. The drum was so big that it set off car alarms with its vibrations as men beat it with what look very much like softball bats (with all the brand names filed off to make it look more "Shinto") while the kids pulled it by. The kids earned their afterschool snacks for this week.

I've been quite social these past weeks, meeting friends for lunch and getting out and about much more frequently than usual. I made it to lunch in Harajuku with some friends from the opposite ends of Tokyo, a book and clothing exchange at a local foreign wife friend's house and lunch with a friend I hadn't met in 13 years within this past week.

I was so pleased with myself for clearing out some space in the closet by taking a box of books to give away but ended up bringing home about three times the volume in children's' clothes and a few things for me to wear. We store off-season clothes in big plastic cases and it's about time to shuffle the summer and winter things around again. Hopefully we'll make a little more room then...

The friend I hadn't seen in 13 years and I talked so much that I hope I didn't make her late for work after lunch. She insisted on treating me and I enjoyed rosemary chicken, mashed potatoes with garlic and salad at a downtown restaurant. The portions were big and I ended up leaving a little, which is a first for me. It was so nice to see her after all these years!

On the way home yesterday, I slipped on the wet steps at the station and now have a very dark and large bruise on my backside. I was glad that I didn't knock my head on the steps. It hasn't been this painful to sit since I fell out of the cherry tree onto a railroad spike and needed to get a tetnus booster in the other "cheek" about 36 or 7 years ago. Ouch! It is not so bad today though. I'll have to refrain from posing nude this month.

Feeling sorry for myself wouldn't fill the refrigerator, so I took my sore anterior out to buy some milk and other provisions only to have my back bicycle tire loudly pop halfway to the store in the cold, wet night, bursting my hopes of a comfortable ride home with my groceries. I took the bike through the back employees' entry and up the freight elevator to the cycle service desk on the 4th floor where an itinerant bicycle repair guy will be working on Saturday so I have no wheels for a few days.

Another Nice Neighbor

When my British neighbor learned that the nice septuagenarian Japanese cancer survivor in my building wanted to come along with me to my next oncology appointment, she offered to give us a ride to make things easier all around. It is very comforting to to have these helpful people around.

September Checkup

Today I took a neighbor with me to my oncology check-up. She is a 30 year survivor of stage IV breast cancer and alive and well at 74 even after the cancer had spread to her bones. She went through 3 years of chemotherapy treatments about 20 years ago even though her doctors gave her 6 months to live. She said she decided to do all the things she liked to do and that's what keeps her going to this day. She was the dean of nursing at a medical school for much of her career (years and years ago) and, after hearing of my concern about a spot that showed up on my right lung in a CT scan, she decided she wanted to accompany me and see and hear more about the situation to decide if I should go to her oncologist at the National Cancer Center in Tsukiji.

She was impressed at how direct and open my doctor was and said he seemed quite sensible. This was encouraging to hear after going solo for so long. I had a little more courage than usual due to her presence so I asked outright if he (my onc.) thought that the spot was definitely cancer. He gave me an apologetic "yes." Sigh. I kind of thought so too. This edges me into stage IV. Feh! A number. He did say that it is much smaller now after the last part of the chemotherapy and that I should get another CT scan with contrast on 10/4 to monitor it.

He said I should continue with the hormonal therapy he prescribed (which I'd understood to be mainly for post-menopausal women). I'll also need to begin getting monthly shots of Zoladex to shut my ovaries down as the chemotherapy apparently didn't shut them down. He reitirated that an oophorectomy (removal of the ovaries) would have been the best option before Zoladex became available but that 2 years of Zoladex would be much kinder to my body.

It will be a little expensive as my 30% of the Zoladex will cost about $300 a month. (How can a syringe full of liquid cost $1,000?!) The daily pills of torifimene will only be $50 a month. I guess I'd better start working more or learn more frugal ways to live because we'll need about $300 a month per child to pay for high school when that time rolls around. (Even the public high schools are not free.)

If 10/4 CT scan shows that the spot is smaller or even the same size, then just continuing on the hormonal treatment should be OK. If it's bigger, I may need to break out the wigs again. The neighbor wants to come with me again to the 10/10 appointment and ask if I should get a lung biopsy or go for a second opinion at the National Cancer Center. She seems quite excited about being useful but I do have to be careful to give myself a little extra time to get the hospital and back without rushing her.

Today's good news:
1. I feel fine.
2. My last blood test results were fine and, in spite of my appearance, I have very low cholesterol.

Front View of Granny K

Front View of Granny K
Originally uploaded by Koggy.

This is the "before" picture, 50 extra pounds and someone else's curly silver hair. It may take a few months but I hope to post an "after" picture with fewer chins and more hair.

The Waaaay After Picture

The Way After Picture
Originally uploaded by Koggy.

At least I have hair now...

Ms N Turns 9

Ms N Turns 9
Originally uploaded by Koggy.

She finally agreed to to get a haircut so she'd be fresh and clean for her birthday.

Rainy Day Fashion Fun

Rainy Day Fashion Fun
Originally uploaded by Koggy.

A few rolls of tape and some old cardboard make for half a day of paper fashion. Note the long hair on the soon to be 9 year old.

Master L Turns 7

Master L Turns 7
Originally uploaded by Koggy.

The final design that we all agreed upon was a simple Devil's Food Cake from the Joy of Cooking with whipped cream and candy decorations.

The Next Step

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...

The Old Me

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!

Aaaaaaaand She's Off!

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.

Last Chemo

Wooo Hooo!

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...

Relief

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.

Summer Plans for the Rest of Us

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...

Pure Horror

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!!!

J's Summer Plans

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.

A Teenager

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.

Flying Starts and Other Surprises

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.

6 More Weeks

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.

Toilet Talk

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.

http://www.gaiam.com/retail/product/02-0334

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.