Foul Weather Blogger

OK. Maybe I'm not obsessive enough about the computer to keep up with this blogging thing. Sorry I've been gone, for those of you have expressed so much care.

Or maybe I'm just a foul weather blogger. I've had weeks of fairly good recovery: learning to stabilize with my new energy level, getting back to work full time, having a ball with my physical therapist, gaining strength. The Herceptin treatments are not taking me down as much, which is encouraging. However, I can see that it's a constantly changing road

BODILY FUNCTION WARNING! READ NO FURTHER IF YOU DON'T LIKE POTTY TALK! The last few weeks have been odd due to unusually persistent diarrhea. After 16 days the diagnosis came through: I have parasites, with the sci-fi name of Blastocyte Hominis. James says, "You always did attract an unusual crowd." At least we know. I'm taking a course of antibiotics and laughing about it a lot. Weren't Blastocytes weapons on Flash Gordon, or a colony of aliens in Buckaroo Bonzai?

This week is a fundraising event at work, which seems to be going fairly well. However, I'm utterly exhausted after a day of corralling volunteers, lassoing stray details, and herding guests into table assignments. Time for some Doctor Horrible and chamomile tea.

Molasses

The Herceptin treatment is sticking with me longer than I'd expected. I spend part of each day moving through molasses. On days I can take naps & don't have to work, this is not so bad. Today it became frustrating. Will it stay this way? What happens when I add in Tamoxifen, which is also supposed to create fatigue?

What an interesting way God offers me to slow down.

On Monday, James & I celebrated part 3 of his birthday, bringing the set of Boules balls he asked for to a court along Lake Union. We played this simple French peasant lawn game as neighbors ambled the street, gulls flew overhead, waves lapped the shore nearby, the sun moved toward its bed and the moon rose next to St. Mark's Cathedral. Damn. What a good life.

Today I was fitted for my prosthetic breast in Nordstrom's while their famed pianist played live, piped into the dressing rooms: "Every move you make I'll be watching you." OK. That was truly weird.

First Treatment

Friday was my first treatment with Herceptin, a spiffy designer oncogene, custom tailored to match the HER2-neu proteins that stick out of my cancer cells. Herceptin latches onto the proteins & calls in the bouncers -- the immune system.

The hospital was running unusually late, so I didn't start my treatment until nearly 4 hours after it was scheduled. But they treat you very well: sandwiches, fruit, juices and A CUSTARD CUP. It took about 2 hours for the liquid bag of meds to drip into my system. As predicted, I felt quite flu-y after. It was weird to feel cold in the midst of Seattle's heat wave. Luckily I'd cleared my day, so went home and curled up in a shawl with a guilty-pleasure: a Hugh Grant dvd my sister sent in a box of other entertainments. The next day I needed to take a 3 hour nap, but otherwise felt fine. Future treatments are supposed to be easier. Boy, am I getting off the hook.

My little bag of clear fluid apparently costs $2000. Discovering this during my cost-estimation research had me wondering: Is this really worthwhile for the 3-5% reduced rate of recurrence I'm getting from it? More research, prayer, and reality checking: this is just what treatments cost. Accept it: my health is worth the cost of a new hybrid car or 6 months in Italy. I tell all this to Kevin, the droll nurse who sticks me. He reports that $2000 is cheap. There is a med for pregnant women with a particular blood disorder that costs $45,000/bag.

I'm getting off easy. I am surrounded by blessings. I am grateful to my toes that God & some clever people invented insurance.

Deciding To Launch

We have been watching peregrine falcons raise their chicks on a ledge 57 stories over downtown Seattle. When nearly ready to fledge (take their first flight), the young spent hours looking down, cocking their heads at all angles. "Look, there's a pigeon! Hey, that wind feels great! Boy. It's along way down." That's how it feels to consider cancer treatments.

For weeks I've been peering at all the options. Today we took to the air, agreeing upon a decision for treatment. My oncologist fully endorses it AND THERE'S NO CHEMO!! It's been a stressful decision, weighing data, side effects, desired outcomes, places where the data has no clear recommendations. Thanks to the internet and a family friend (hi Fran!) who's a medical librarian, I had lots of real science to consider. It was fun to walk in with a study, hot-off-the-presses that even my docs hadn't seen. They all wanted a copy. After sifting data, it really came down to what I was comfortable with. David B did his best Counselor Troy imitation, as sounding board and companion for the final informational meetings. At times these felt like negotiations. Next week I'll go in for baseline tests, and start the meds on the last week of July.

For those who like the nitty gritty: I'll be savoring intravenous draughts of Herceptin & nibbles of Tamoxifen. The first one addresses the HER2-neu aspect of my tumor. The second addresses the hormone receptors. Neither has highly toxic side effects. Between them, my statistical likelihood of recurrence within 10 years has been reduced to about 4%. Add in vigorous exercise 5 days a week and it dives down to 2%. I have a shiny new YMCA card: it's not as photogenic as the falcons.

For those who like bird stuff, you can read about the peregrines on the website for the Falcon Research Group, frg.org. Follow the link to the falcons who nest on the Washington Mutual Tower. We usually watch them through a spotting scope, but there's also a webcam with a much closer view. They're all gone now, but there's always next spring!

Things To Do While Waiting

1. Read. I Knew A Woman: Four Women Patients and Their Femail Caregiver by Cortney Davis. A beautiful book by a nurse practitioner, tracing a year in her life as she follows 4 patients from different stages of women's life. Davis finds the poetry within physical symptoms, and brings much affection to the dance between our bodies and our souls. This book transformed my night-before-surgery.

2. Read Sing Them Home, a new book by Stephanie Kallos, that is a great yarn, a refreshing journey of transformation, and is set in the Nebraska plains, which I'm fond of. Stevie is breath-taking, utterly concrete, and very funny.

3. Watch silly dvd's, especially Corner Gas, a Canadian series set in a small town that's kinda like Northern Exposure set in the plains.

4. Go to LOTS of 12 step meetings.

5. Do research and also know when to step away from the internet.

6. Take walks

7. Hang out with James in bed in the morning

8. Go back to work. Gently. It's great to think about other problems, for a change.

9. Hang out with friends, eating delicious food & remembering that life is really good.

10. Find every form of prayer/meditation/stress reduction that works & practice them whenever waiting seems impossible.

I'm likely to get results on the oncogyne dx test early next week, which will help determine whether chemotherapy will be helpful or not. At this point I see the oncologist and the cancer naturopath on July 14 & 16, the week when I need to make the decision about chemo. Choices will need to happen quickly at that point, so I'm trying to ask all the questions I can before hand. Alice, Jason, and David are going to help me to sort through the medical and statistical info, which I think I understand, but want to be very sure. Hooray for friends with different skill sets than mine.

Oh, I'm also waiting to hear about health insurance. My workplace is changing insurance as of July 1, and we don't have the new group number yet, so I can't determine what will be covered & what won't. This has the potential to be crazy-making. I have tested the hypothesis that I can convince the insurance company to tell me items they don't want to. Refer to #4 above.

Something FISH-y

More Medical Meetings yesterday & today: with the surgeon, Dr. Buchanan and with Dr. Rinn, the oncologist. I was a bit hasty in my last post...

My tumor tested positive for HER-2neu, an oncogene that encourages cells to grow. In 30% of breast cancers, there are too many of these oncogenes, which is why the cells over-produce. My initial test for HER-2neu was inconclusive, but the more expensive (FISH)test shows I am positive for it.

Treatment protocols are not clear for for tumors of my size (under 1 cm) that are both hormone receptive and HER-2neu postitive. On the one hand, it's a pretty small tumor. On the other hand, HER-2neu indicates a greater likelihood of re-occurrence. Dr Rinn, a sprightly woman, who is as ready to offer a smile as a statistic, is inclined toward a chemotherapy regimen combining hercepterin and taxol, while admitting that choices are not clear.

Ugh. I really wanted to avoid radiation & chemo. I was looking forward to the recovery period, instead of more treatment.

This news puts me back into the realm of gathering information: we'll try to run more diagnostics on the tissue. I'll meet with a cancer naturopath to look at a variety of options. I'll look at some more studies online. And pray. And sleep.

Pathology Report is Good

This morning at 9:15 my surgeon called, just returned from a vacation trip. Not every surgeon calls on Sunday mornings, but Dr. Buchanan knows I've been awaiting the surgical pathology report. HAPPY DANCE. They found no suprises, just the tumor that they expected, the same size and grade that was predicted. More details to follow after my meeting with her on Wednesday. The results of this report have been my one lingering concern.

The day has been a rich & long one, beginning with that call, going on to church, an afternoon journalizing in my favorite tea shop, and an hour-long reiki treatment at the center of a circle of four women. Their healing touch provides much-appreciated respite from the aches that accompany this new stage of healing. Now I'm oh so ready to head off to napland.