The Consultation

I stopped downstairs at 9:15 to pick up my survivor neighbor and we walked to catch the train downtown where we got on the subway to the National Cancer Center. We arrived at 10:30, half an hour before our appointments, so she would have time to give her pre-consultation blood sample. It was very crowded though and there was a 50 minute wait in the blood test area where we met one of her friends who had arrived about 10 minutes before we did and was also waiting her turn for the needle.

The doctor called the first women while she was off giving blood so my neighbor went into the examining room first with a "She's off giving blood so you can see me now instead." So he brought her records up and they had a talk while I waited outside for the other woman to come back to let her know that her turn had arrived. He saw the other woman next while my neighbor went off to give blood. Both women are basically visiting to check that their cancer hasn't advanced and get their blood work so they can plan their diets for the next couple of weeks or months until their next appointments.

Then it was my turn to meet the infamous Dr. Fujiwara. I'd been expecting a 60ish guy but he was only about my age or a little more. He offered to write the notes about our consultation in English (they always write in duplicate and give a carbon copy to the patient), but I need them in Japanese for Shigemi so I thanked him and asked for Japanese.

He told me that they are still waiting for a sample of my tumor from two years ago to arrive from Kyorin so they can re-dye and re-do the cell work to confirm the lab results before outlining a specific course of action. He did say though, that from last month's CT scan results he could see several "shadows" ranging from a few millimeters to 2 centimeters (in my left lung) and that further treatment is necessary. The CT scan showed that other organs are all healthy and the bone scan confirmed that there are no metastases to my bones. The electrocardiogram and heart ultrasound showed I have a strong and healthy heart.

Basically, he needs to reconfirm the cell work on the original tumor before he recommends the next step. He looked me in the eye and explained that at this stage, when breast cancer recurs, there is no cure and that all treatment is geared towards living a quality life with cancer. My neighbor told him indignantly that Kyorin hadn't even taken a sample of cells from my lungs but he concurred with my Kyorin doctor that a lung biopsy would be more trouble than it's worth as the CT scan clearly showed the breast cancers metastases.

I mentioned my concerns of possible genetic tendency to blood clotting (Factor V Leiden) and he immediately looked at my bloodwork from last month and confirmed that the platelet count was a little high and that he would check for Factor V Leiden next time to see how it might effect my treatment options. He suggested basically the same thing as my Kyorin guy; induce menopause and prescribe anti-estrogens or aromatase inhibitors and constant vigilance. Then if that doesn't keep the shadows in check, the next step would be Herceptin alone or Herceptin with more chemotherapy, probably Taxol or Navelbine.

I'll get a head ultra sound and then an ultrasound of the radiated area sometime in the next couple of months as well as having my veins in my legs, especially the leg that had the clots last year, tested.

We three survivors finished at about 1:00 p.m. when we proceeded to a nearby restaurant where we met another survivor friend for a delicately presented Japanese 10 course lunch. The other women are inspiring and deserve their own posts sometime.

One had lungs mets and was told that she'd exhausted treatment options and should contact a hospice. She went home and dug up her garden to plant vegetables and started eating only genmai, the vegetables she grew and tofu products and gave up coffee, chocolate, dairy products, fish and meat. Eight years later, she goes for check-ups every 3 months and is doing fine. She doesn't mind a little fish now and then, so I think that she enjoyed lunch today as an occasional treat. She handed me a bag of genmai and black rice cooked with beans and packed into balls (rice balls are sort of the Japanese version of sandwiches; a convenient finger food) and some dried radish and freeze dried tofu to make for dinner tonight so I could try her diet. I told her how I had considered genmai (brown rice) capability when buying our most recent rice cooker but that I hadn't managed to convert the family from white rice yet. She said I should go ahead and cook a batch and freeze portions for myself and let the rest of the family eat whatever rice they like.

The other woman is a retired genome researcher but will be going to London next year to work again upon invitation by a genome research lab there. She asked to see my CT scan results and was sympathetically worried for me.

The kids are begging for computer time so I won't delve into the sensory pleasure that lunch turned out to be but it was certainly worth a trip downtown and a morning in the hospital for...


Lily said...

Hi Kathy,
Lily from MIJ here. It sounds like your friend is on a macrobiotic diet (actually it began by a Japanese fellow and heavily draws on Japanese ingrediants). I was curious about it in the summer so I did a bit of reading and bought a couple of books- the few recipes I tried were quite good. It sounds like what she is eating is so limiting but you can get creative with it. If you want I can copy a few of the recipes and fax/ mail it to you. Also if you listen to NPR you can search under macrobiotic and listen past programs about it if your curious.