Saturday, December 29, 2007

Drama Princess Seeks Cancer Coach for Off-Off-Broadway Gig

It's been awhile since I've been afraid. The curtain of safety has been parted with news of one friend's recurrence, another's difficult surgery, yet another chum's wait for scan results. The fear is on stage now, the actors are friends. I do not want to see them suffer, nor do I want to lose them from my life. Every trite and overwrought phrase ever uttered rushes to my mouth but I catch myself at the last instant, instead offering up only what I have to give: my health, my company. And self-conscious that these friends must consider me unworthy to share in the sorrow because my cancer is new and has not yet mustered the forces to metastasize, I stuff my own anxiety back into place. 

Yet still there is the dozing puppy that is my future with this disease. I see her over in the corner, one curious eye sleepily checking in to see what story is being told onstage.  The fear I have for myself is that I won't make the right treatment decisions, that I will damage my body beyond repair in an effort to grant it a few more years. My children will not benefit if they have a mother who is alive but has lost the joy in moving her body, in creating stories and believing in them, and who is in too much pain to sleep or hold their hands. I've witnessed the horrific degradation of body, mind and spirit on those who pursue a cure at all costs.  Already I believe I've wasted time with an oncologist who goes by the book and not by the patient, who doesn't listen and doesn't heal. This is my life. I'm "pre-recurrence" and I know that what I do, or don't do, now will affect my survival. Yet I've already given up more of my health to the potential cure than I was ever willing to sacrifice. 

How do I find the balance that will save me? Tell me now before I forget I asked the question.

Thursday, December 27, 2007

Mindful Musings

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.