|
What's Been Happening: Mayhem and Mystery - August 16, 2009 Well, it's been a quiet week at Lake Woebegone, my hometown Wait a minute, wrong lake and wrong hometown! It's been crazy at the Hamptpons' on Lake Chickamauga, in Hixson, our hometown. Debbi's health crises have provided recent excitement but all is settling back into a calmer pattern. Here's the scoop, extracted somewhat from a recent email "newsletter" to family and friends. Debbi has had her share of challenges, as usual, but we're on a new treatment path and beginning to settle in. She had her last dose of the most recent clinical trial chemo at the beginning of May and then was granted a little "chemo holiday". As usual for Debbi the trade-off for not being on chemo is increasing pain as the cancer returns, so June and July were hemmed around with trying to manage the pain as we began looking with our oncologist in Nashville and here for the next good option. It looked as though it would be another clinical trial to begin in early August, but the cancer was taking hold quickly again by the end of July and Debbi found herself in a new crisis, with uncontrolled pain, some residual nerve problems from the last two experimental chemos (which still had been life-savers), and for the first time, fluid appearing in her abdomen, an ominous sign for cancer patients. She was hospitalized in Chattanooga from July 29 to August 7. Her liver and abdomen showed signs of the cancer in lymph nodes and a small lesion in the liver. Gratefully, her liver function is still completely normal. After getting pain and other side effects from past chemo under control, Dr. Johnson here in Chattanooga started Debbi on Ixempra, a drug approved not quite two years ago for metastatic cancer. She had her first dose August 6 in the hospital. After coming home, she returned to the hospital daily to get shots to boost her white blood cells and so that Medicare coverage of the shots would be assured. She has had home health for the first time, coming home with a catheter (ugh!) but getting rid of it a few days ago, happily. Her blood counts have stayed up and other than the fatigue that goes with chemo, she's tolerated this first dose well, so far. She'll get the drug once every three weeks in the in-patient infusion center of the hospital. The fluid in her belly is all but gone, and a lesion the size of a walnut nearly disappeared overnight after the first dose of the chemo. Her oncologist just shakes his head and points heavenward once again. We know your prayers and good thoughts surround her and lift her up. Thank you. Steve was the busy and excellent caregiver he always is. Debbi says she could not have done a day in the hospital (or at home) without his assistance and encouragement. He is feeling pretty good, except for the fatigue of being on call for Debbi 24/7. We did get a few fun things in this summer. In June, we belatedly celebrated Steve's 65th birthday with a two-week trip to Gulf Shores, AL. Debbi booked a little efficiency on the beach and they relaxed, tanned deeply and slowly, with lots of sun block, and Steve got to fish. We read and rested, using the money we had squirreled away for Uncle Sam, just in case, which was not needed for our 2008 income tax. These days since the hospital have been better and better days. I am slowly regaining my strength, using a wheelchair when we have to go distances and using a walker for stability outside the house. Bought some cool red clogs so that I don't look like a total little old lady. The hair will be going soon again but I'm glad to have some good-looking scarves on reserve. Small thing to whine about in the overall scheme of things. My surgeon wrote me back after my recent family newsletter and said, "Debbi, your life is beyond all rational explanation, and that is just fine by me. The mystery is what makes it all worthwhile!" And she's right.
Hair Adventures - May 22, 2009 'Twant for powder an' for store bought
hair, People get real comfortable with their
features. Nobody gets comfortable with their hair. Hair trauma.
It's the universal thing. 'Tis the voice of the Lobster; I hard him
declare, Ahhh. . . hair. As much as I try to leave vanity behind me, as much as has been carved, burned, poisoned out of me and wrested from me, I still find myself attached to the notion of having some hair. When I was so ill last year, I had a picture of myself being ceremoniously washed and shrouded for my burial. My body is battle-scarred. My chest is the wreckage of surgeries and radiation. I have one lovely remaining reconstructed left breast (although the tattooed nipple has paled with time), and this artifact will be there until only the implant lies against the keel of my ribs, when time has done away with my flesh. I have the bump of my port-a-cath, protruding like some mini-pacemaker below my left collarbone. I have the deflated, now hardened former site of a reconstructed breast on the right, the implant long ago plucked from its pocket, the wrinkled remaining tattoo of a nipple puckered and pitiful in the middle. I have a map of purpled, entwined county-road lines that are the overgrowth of tiny veins that come after radiation to a large area of my chest. There are also overlays of beige and tan and brown rectangles, where grids of areas were delineated and shot through with electron and neutron beams during two separate sessions of radiation therapy. I have lost toenails, fingernails, eyebrows and eyelashes. I'm an odd specimen, at best, when one is not prepared in advance for the full view of me. I haven't had hair on my head or other parts of my body for 18 months. In a funny, graphic moment, my 22-month old granddaughter came into my bedroom as I got out of the shower recently and caught me naked. She did a quick curious scan of me, head to toe, and returned to my girl parts, south of the navel. She crouched, took inventory of what was visible without any covering. She straightened up triumphantly, pointed at me there, right at her eye level and declared with great assurance, "Bug bite!" Yet as I contemplated the beloved family members and friends preparing my body for burial and their dealing with what remains of my remains, what oddly concerned me most was that I would be buried bald. So, given all of that visible evidence that my body is certainly not the usual example of female anatomy, why the energy about the hair on my head? I guess because having been accustomed for nearly 15 years to not having my own breasts, being bald has taken its place as the most powerful icon for being sick. On the lower dose of the chemo I've been taking since last November, the hair on my head began to emerge slowly and tentatively again a few months ago. At first, it was straight and silver-white. Then about 40 cowlicks began to manifest themselves. Then the right side became nearly straight (my natural hair's inclination), while the left side made a wild turn and became coarse and curly, downright nappy. When it got wispy and ill-kempt in the back, I went to a hairdresser to get it cut and shaped. Thirty-eight dollars later, it was about 1/8" shorter and still without a real style. I went home and used some over-the-counter hair color on it, vowing that such short and shapeless hair did not warrant the salon-priced full treatment. I used a color in the family of tones my retired hairdresser used to use, hoping for a nice sunny gold. Bad idea. The coarseness of the hair affected how it took the color. It turned out a brassy blonde, with lots of reddish undertones. I lived with it for several weeks and tried again. This time, I went back one full shade, still staying in the golden family I have liked, but darker. Bad idea. Less blonde and more red. The next time, I used a non-permanent color, again one more level darker than before. When I took the towel off, it was "Oh, no!" time again. Even redder. Back to another hairdresser, who gave me a razor cut, shaping the unruly mass more and advising me not to fight the curl on the left side, but to "work with it." This meant using some gel or other product and letting the curl have its way. The problem was that as it grew out, within three weeks, the curl was having its way, oh, yes, on the left side. The top was still a bit coarse and piled itself up into a cottony mass, no matter how I tried to smash it down or comb it down with gel. The right side now had enough length that the ends over my ears flipped themselves out a bit. The overall effect was Bozo the Clown. So, my daughter has been looking out for me, sympathetic on the sidelines. The other evening she came home with a L'Oreal color product in the "5" range. I had started out in the "8" family, so this was considerably browner. She did my hair for me and it still has coppery undertones, but it's much darker and toned down. It's time to get it cut again, but she actually was able to beat it into submission, into a style of sorts the other night. Since summer is coming and I know how miserable it is to wear a wig in hot weather, I am grateful to have enough hair to do without a wig and not create too much of a scene as I go about my daily life. This is, I think, the fourth time my hair has grown back after treatments. Like my state of Tennessee, it has three distinct regions. Tennessee is made up of West Tennessee, Middle Tennessee and East Tennessee. My hairdo right now is made up of Curly and Nappy Left Side, Cottonhead Top, and Sorta Straight Right Side. It could be that some new clinical trial is right around the corner, waiting to make me bald again, but for now, I'm going to try just to enjoy a small crop of hair, even if it's unruly and not easily subdued. Maybe it's a metaphor for me: unruly and not easily subdued. I am pretty hard to kill, after all.
|
|||||||||||||||
