Tuesday, October 16, 2007

Autumn for Me, Please

Forget spring, autumn has always been my time of renewal. In Illinois, the days would change in light, scent and even texture, transforming my freckled cheeks into smooth-skinned apples by Halloween. We lived on a large corner lot full of oak trees that rained leaves continuously from early September until the first kick-ass storm. Weekends found us outside, raking and jumping into the piles, again and again until either we tired of the game or our father tired of us. Leaf burning has long since been banned, of course, but in those pre-green days of the 70s we gleefully burned those musty, nearly damp leaves. Grown children of the suburbs need only catch a brief whisper of incinerated leaf in the air to be once again back home, sprawled on cool, hard earth with the neighbor kids, the dog of their youth begging for one more stick throw.

As an adult, or almost adult, football games, the new course schedule, a nubby, cherry-red sweater and pub crawls restored my sense of possibility. The slant of light, the rush of wind promised another good friend, another love, another chance. And at last I could tumble into a book without summer coaxing me out to dance in her sunlight and green, green gardens.

Maybe spring is just too sloppy, with the melting mess of snow, mud and sprouting green things underfoot. Spring showers never brought as much drama as autumn storms. Moving to Northern California 21 years ago I didn't understand that I would be sacrificing thunderstorms for a monsoon season. The first year I kept waiting for the rain to let up and finally asked a neighbor, a native, if the deluge was normal. "No, we're in a drought," he lamented.

My ritual observation of the season metamorphosed into an annual pilgrimmage to Chicago. Every October or November I would make the trip, usually timed to celebrate my mother's birthday or Thanksgiving. Elaborate preparations evolved. New clothing was purchased, leather shoes were hunted and acquired, visits with friends and family coordinated. Because I wanted to return to my San Francisco flat and find it welcoming and cheerful (to balance the inevitable homesickness) I would become a whirling, frenzied cleaning fiend for weeks before leaving. Projects untouched for months had to be completed before departure. Since I normally had someone stay to care for my pets this added another wrinkle; I prepared for my "house guest" with the attentive detail reserved for visiting parents and first dates. Everything had to be perfect, and I hoped the petsitter would be of the tidy persuasion and leave my home in like condition for my return.

The journeys home ceased with the death of my parents. Some traditions survived; my husband and children know all too well that the house must be showcase-ready before we leave on vacations. One of Mom's little eccentricities, like having to unpack immediately upon arrival and creating a homey nest for everyone. This current trip back to Chicago is bringing up all the old tendencies that have been dormant for a decade. I've been preparing the house, readying the family, advance-planning the kids' schedules so as not to be avalanched with errands upon return. Today I found myself shredding documents that my husband finally weeded from his bill-paying stash. As I was feeding them one-by-one through the steaming machine, cursing myself for not having invested in an industrial strength model, I noticed the date on one statement: 2003. And I felt the need to shred these documents a few days before leaving for Chicago because...? Because I want my office space, the space I evicted my husband from in order to have a writing area, to be clean and inviting when I walk back in the door. When I come home in eight days I know my house will be unrecognizable. Two young children, an insanely wild Australian Cattledog, several cats and a husband less attentive to environmental conditions than I guarantee it. But I need to leave home with everything in order.

A simple calendar is in place for Joe and the kids to follow. It lists what they do each day and what I'll be doing. There's a page of phone numbers of all the people I'll be seeing and when I'll be seeing them. The laundry is done, and food for snacks, lunches and dinners will be in the cupboard. A present for a friend's party is wrapped and ready to go. Invitations have been sent for our daughter's birthday coming in just a few weeks; her gifts are nearly purchased, the cake ordered, party favors gathered. Today I had the carpet cleaned; it needed it, and the cat who has been mistaking it for her box will be seeing the vet before I leave.

The goldfish seemed to be well -- there's a history of goldfish tragedy and demise related to my trips -- until yesterday, when my daughter noticed that Tigger seemed to be staggering in the water. A gorgeous three-inch-long comet, she did seem to be awkwardly trying to move about, like the drunk who makes a good effort to show she really isn't drunk at all. Pooh was spending too much time hiding at the bottom. An inventory of symptoms, a trip to the fish store, and I've just enough time to treat my 3-year-old friends before leaving.

Does it really matter if I get everything done? Nope. I know this. Does putting my home in order, preparing my family for my absence, taking care of my pets have as much to do with my renewal as it does with practicing to leave? I've been wondering if and how I can ever leave them behind. My little trips are helping me understand how this is done, taking my fear away and I hope building their confidence in themselves, and in my returning to them.

Sunday, October 14, 2007

Chicago and Chemo Notes

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.

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.

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...

Thursday, October 4, 2007

Dorothy Heads to Kansas (er, Evanston)

In the past few months I've become a frequent nibbler at the health services buffet. The more I desire to escape from appointments, tests and those nagging symptoms of the post-cancer treatment life, the more I find myself trudging out to yet another medicial visit. Addicted to time-consuming, often rude encounters with the health profession? Nah, not so much. I struggle with every event, thinking "Is this a one or three-doctor-visit problem?" Often, I know that if I want to reach the end of the Yellow Brick Road (final reconstruction surgery) I have to first complete the consultations, the oophorectomy recommended by the oncologist and OB/GYN, the echocardiogram that was requested by the doctor who was consulted about the ear pain and hearing loss and instead discovered the really, really low blood pressure. Really, my greatest desire is to present myself to team of specialists and say "Have at it. Find out everything you can about me, why I have no stamina, extreme and uneven bouts of fatigue, ear popping and a sensation of wind blowing through my head, why my left arm burns and the part of my chest that isn't numb aches. Then tell me how to fix myself." Because really, they've done enough damage already.

The node biopsy, bone scan and liver scan, bloodwork and cardio tests have shown me to be in great shape for a cancer chick. As far as my oncologist is concerned, she's done her part and I'm good for another three months. She still hasn't addressed the big problem, of course, and my quest for an integrated program is unsupported. How frustrating that at the point where the recovery should be given top priority to prevent recurrence the patient is set adrift, alone with little advice and only their own resourcefulness and cashflow to create a health program. A recent study indicated that both exercise and diet-and these components have to adhere to specific standards- are necessary to attain a 44% reduction in cancer recurrence from those patients pursuing either exercise or nutrition programs alone. Whoa Nellie, I hear that and think why isn't the oncologist on the phone, discussing my program! Heck, if I could just get a reasoned response when I asked the question and not "eat whatever you want" like I did during chemotherapy I'd be one excited gal.

"Nutritional oncology" is the buzz phrase of the moment for me. No where in this land of medical wonders I call home (San Francisco Bay Area) have I been able to find a one-stop-shop for such a product. I've looked, I've failed. I'm going to my original home, Illinois, where a clinic run by Dr. Block provides integrative mind-body medicine for cancer care and post-treatment healing. My friend Mot will be finishing his last treatment there and I'll synch my appointments with his, then chauffeur him back home to Wisconsin. The trip has become a healing one in other ways, with visits to my childhood town, days with my best girlfriends, reunions with long estranged family members, and a brief respite from hands-on momhood. When I return home I hope to have a program ready to put in place. No way am I going to be a sitting duck waiting for Round Two. Already I'm stronger than I've ever been, and I'm not even close to where I'm headed.