Mindful Musings

Photo: P. Winberg 

Love the gal in yellow, taking a break on the stairs. Silly of her to wear that fetching frock, you say? But she was just out for a picnic in the woods with her beau. Who knew she was going to have such a bad day? Who knew? And yet she's just resting a moment before starting again. My guess is she's got some really great climbing shoes on beneath those frills.

My fingers are numb and it's not from the December frost hitting California. Twenty-six days on Aromasin and I'm ditching the tiny, sugar-coated white pill, exchanging it for another potential toxin called Arimidex. Thought I might tough out the bone and joint pain, even the insomnia, but the increasing numbness in my hands and fingers cannot be ignored. Although I know my Agent of Doom will never agree, I am having more cognitive disruption and memory loss. How bad is it? I've had to look up the names of the two drugs mentioned above three times while writing this post. Three times. During a conversation with the kids yesterday they repeatedly corrected me ("a tiger, mom, not a lion"). Over and over and I don't even catch myself "forgetting." Arimidex might be a better drug for my body. If not, I have two more options.



Ho, Ho, Ho
Christmas pushes invisible buttons. Rules are in place and not of our making, defining how we celebrate, where and when. Every year I wonder what traditions our children will remember, what they will carry forward. I hope it won't be the mad rush to buy the gifts, wrap the gifts, get the gifts, unwrap the gifts...
Next year, always next year I promise to put more of my own tradition and life into the celebration. The busy-ness of following the established course distracts me, soaks up the energy and competes with the simplicity I long to create. Will the kids be disappointed by just a few gifts and time outdoors, in the woods or near the ocean? Will I have the courage to stand up and make the changes I want, knowing that they won't be popular with anyone? We'll see.

Journey of a Friend
The last post may have left the casual visitor wondering what became of dear Mot. The results of the scan were disheartening: the treatment did not work. After recovering his spirit, Mot returned to Evanston and began Treatment Plan B. Tomorrow he undergoes another scan and will learn next week how effective Plan B has been. No matter the outcome, Mot will be taking a break from six months of chemotherapy to fly the gentle skies to California for a visit with us in February. Yahoo!

There's Politics in Support
There's a hierarchy of sorts in the cancer world. Those with advanced or metastatic disease are "higher" up the totem pole than those whose cancer has not yet spread or recurred. (Yes, it's true. Does anyone on either side of the divide want to debate this?) Although to someone without cancer it seems I've been through a lot (and hell, I really have and still am going through it), I often feel unworthy in cancer groups or in conversations with people dealing with advanced disease. It's as though I haven't suffered enough, or really can't understand their anguish. Maybe I don't let people in enough to see my own pain. Dunno. Now, this isn't the case with Mot of course, or my close friends. Yet I've encountered it enough to be cautious when meeting people in survivor groups. Why mention it here? I've been working to find and now create a support group for women cancer survivors on the Pensinsula. Believe it or not, there isn't one for women (or men) after the initial oh-my-God-I-have-cancer. It's pretty well-documented that support groups add to survivorship, or at least to quality of life, and I know that they are fantastic resources in ways that the medical community is not. So, bringing this one to life is a big deal. It is also stirring up some feelings. Many times I bring good people together and then, not feeling comfortable in the group, I leave. I fear that I may design a wonderful community of support for women and then somehow exclude myself from it.

Wish I could remember where I heard that cancer doesn't create your life, it just amplifies the life you already have.

Chicago and Chemo Notes

GOING HOME AGAIN
Spinning right along making preparations for the trip back home to Rockford/Chicago. The last trip was a family adventure in 2003 for Danny's baptism. Now, I'm heading back solo, the first time since my mom was nearing the end of her own breast cancer saga 11 years ago.

Joe has courageously agreed to sacrifice a week of vacation time and assume the title of Primary and Full-Time Parent. Yee Gads. The children are already nervous and have begun petitioning me for favors. They don't understand why they can't buy their way onto the plane ("we have money, you know...") nor do they see how bored they would be doing grown-up things like talking, eating and talking. They've forgotten how much fun they have with Dad when it's just Dad. A shift in the family power structure is good for everyone. I mean, who says there can't be a King Bee in the hive? At least for a week in October.

TAXOL DOESN'T WORK MUCH
Two fascinating bits of news I recently learned. One made headlines a couple of days ago. Seems that Taxol (one of my chemo drugs) is completely ineffective in treating my form of breast cancer, which is HER-2 negative, estrogen positive early stage. Taxol is especially nasty stuff and is responsible for the neuropathy (numbness) I still experience in my fingers and to some degree, toes. Other side effects, too... to think that taking it was worthless and harmful supports my original hesitation of proceeding with chemotherapy.

TAMOXIFEN SOMETIMES DOESN'T WORK, EITHER
News item two I gleaned from a fellow blogger's site. Since 2005 it has been known that Tamoxifen is sometimes ineffective in women with an altered gene known as CYP2D6. If it isn't working, it isn't helping prevent recurrence. A test for this gene is available but expensive. My Agent of Doom has been pushing me to have my ovaries removed, hence pushing me difinitively to the other side of menopause and into the aromatase-inhibitor class of drugs. Fine and good, I won't be on Tamoxifen then. And yet...I've been dragging my feet, all the while thinking that at least I was getting the protection of Tamoxifen while waiting.

One tip-off that Tamoxifen isn't working as it should is if patients have mild hot flashes. Hmmm, mine haven't been too searingly hot. And I never did gain any weight from Tamoxifen, and I haven't met anyone who survived the drug without adding pounds. What to think? Well, what I think is that I'd have loved to have been told this last May when I was handed the standard, one-size-fits-all prescription for the little white pill. Yes, I would have taken the gene test. I would have wanted to know before starting a drug I had great reservations about.

Maybe oncologists should ask patients if they want the Real Information and Care treatment plan or the Old Doctor Knows Best program. Don't tell me there isn't time, either. There are enough breast cancer patients trundling through the average cancer center to warrant a well-written hand-out, a workshop or video, or website if not time with the Grand Agents themselves.

Ooooh, feeling a little cranky now. Think I'll go have some organic blueberry green tea...