Crazymaking stuff, that Aromasin. At least for me. Everyday I've been circling nearer and nearer the surface, shedding layers of gear, hoping to break the surface. Me, a hapless scubadiver in a sea of chemicals. I stopped taking this last drug December 26 after only 26 days of a proposed 5-year-run. The side-effects are still with me although less now. Every day my brain is clearer, my thoughts more focussed, my ability to stroke through the rip-tide of a medical wonder drug more sustained. The numbness, pain and heaviness of my hands have lessoned but not enough; I'm wearing carpal tunnel wrist braces to bed. I'm starting a Fiestaware collection, always wanted one, to replace all the dishes I've dropped recently. (Did you know that these dishes are guaranteed against chipping and breakage for 3 years? Wonder if I can get a guarantee like that.)

Not sure what I'm going to do for estrogen-stoppage. Maybe I'll bail out of this part of the program completely, or return to Tamoxifen. That one was nasty, too, though, with a kind of fatigue that made me question what I was getting up everyday for, anyway. The body does need some estrogen to function, afterall. This concept of "kill the tumor by killing estrogen" might be a tad overkill if you ask me. So far no one is asking. It's been a problem.

There's a lot of good going on. Dear friend Mot is journeying out from the frozen midland of Wisconsin for a vacation in the chilled coastal territory fondly known as Northern California. We'll play tourist, have quiet time and just pal around.

February will take me to yet another oncologist in San Francisco for a treatment plan review. Afterwards, I'll be returning to my same practice (no choice there, really, thanks to our lovely health care system) but I will be seeing a different Agent of Doom. This one is older, considered a "brilliant mind" and perhaps more able to communicate directly with patients than my current young doc. Both steps are huge for me, and long overdue. Being an advocate for oneself is hella hard.

The survivor support group for women I've searched for is finally happening. We've created one for ourselves with a therapist, retired now, from Stanford. Four women with different cancer diagnoses, backgrounds and intents will gather in a cozy church parlour for love, knowledge, friendship and support. Yahoo. You would think one of our hospitals or cancer care centers on the San Francisco Peninsula would offer a support group for cancer survivors, right? We see their lips moving but nothing much happening.

At the end of February I will begin the "end" of my surgical program. I'm scheduled for DIEP reconstruction. The reality of the surgery is pumping tension directly into a few muscles along my neck. You know, the ones that make it impossible to move your head right or left? Besides worrying about the pain, 7-week recovery and whether I'll have anything at all to show for the effort except thick scars and a flat chest, I'm stressing about the kids. Joe will be home but it will be disruptive for everyone to have me unwell. Hospital time, then resting at home. More evidence to them that their mom isn't well. And yet, I want to finish this up, get as much of my real body back as I can. For me, that means flipping my finger at being "less than" and asking for "real breasts." Okay, they'll be made of tummy fat but it's my tummy fat! No implants, no silicone, no apologies. After 19 months of camisoles I'd like the discomfort of a bra again. Slipping straps. Yes, I'm more than a pair of tits. I don't have to prove it. I would like to have soft, natural breasts to fill out a sweater, bounce when I walk the dog, cushion my children's heads, and be squishy when I hug. I like to hug. Lately, I've been keeping everyone at arm's length - literally - because it hurts when the psuedo-breasts (expanders) are pressed.

So, I guess I really am ready.

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.