Thursday, February 28, 2008

What's new?

Very little is new in the world of Cancer Banter, and that's a good thing. Actually, that's a great thing.

My emotional and physical energy are high. I'm taking longer stretches between blood count checks (and blog posts), and I'm getting more comfortable with the lapses in time. It's been a gradual letting go process from daily, to three times a week, to weekly, to bi-weekly blood tests. Soon, I'll be going in monthly and then, eventually, once a quarter for visits.

At first, I became anxious and edgy when the time between blood checks surpassed a week. I operated from fear. "No, better not do that biopsy," I told my dermatologist. "My platelets might be too low." "No, better not shave my legs," I told myself. "A nick could be fatal (or at least messy." I was addicted to the constant feedback and soothing reassurance of my counts. I lived life by the numbers.

As I'm being weened away from the blood draws, I'm also pulling away from visits with my doctor, staff and patients. I especially miss the upbeat perspective of other cancer patients. It's embarrassing to whine about my skinny butt and deformed skin after meeting an optimistic 30-year-old man who's had ten brain surgeries in ten months. Or an energetic 19-year-old boy about to undergo his second donor stem cell transplant. Or a patient middle-aged woman whose bone marrow doesn't make enough white blood cells or platelets. (She's been a blood patient at CoH for a year and a half, but her doctors are still stumped by her under-production.) On the other hand, if I chose to complain about my concave ass(ets), I'm sure I could find someone who would understand.

But, as I've predicted, my "other" life is expanding while my patient life is contracting. I just returned from another trip to San Francisco to visit my friend Bob. Since I'm "off leash," I got to luxuriate at the Japanese baths, Kabuki Springs and Spa. George and I will be visiting his family in Seattle next week, and later in the month I'll be flying back to spend Easter with my family in West Virginia. We may be hunting for Easter eggs in the snow with my great nephew Will.

I'll be reading one of my "works in progress" at Gorgeous Stories, "brave, moving and often hilarious new work" from Terrie Silverman's workshops, on Friday, March 14, at 7:30 pm at the Church of the Angels in Pasadena. (Call or email me for more details.) I call my piece "Strangers in the Night," and, no, it's not about cancer.

I'm working on revamping my Open Mouth, Insert Fork blog site and will start posting on that site when the rehab is complete.

I'll be seeing many of my local gal pals this Saturday at my first annual Take Comfort! party, a celebration of the food, beverages, music and friendships that give us comfort. I'm hoping that, as a side benefit, the high-fat comfort foods of chips and dips, mac 'n' cheese, meatloaf, cole slaw and plenty of chocolate-based desserts will add some "junk in the trunk."

Not much is new in cancer world, but a lot is going on in my new, non-patient world. And that's just the way I like it.

Saturday, February 16, 2008

All this and . . . high cholesterol too

OK - Who's bored with my bragging about how HEALTHY I ate last year? It's true. Aside from the obligatory biscuits and gravy I scarfed down (repeatedly) in West Virginia, I ate a diet high in fiber, fruits and veggies and low in fat and carbs. I'm putting myself to sleep just writing about this.

So doesn't it follow that my cholesterol would be at its lowest in history? I went in this week for my routine annual physical with my GP and just received the results from my blood test. My cholesterol is nearly 50% higher than it was a year ago. (Except for the "good cholesterol" - that's gone down.)

What the ****? How could this have happened?

And then I remembered the "special diet" that I've been on for the last month. In an effort to pack on the pounds, I've said "bring on the fat." I indulge in half-and-half in my coffee. I suck down Vietnamese French-pressed coffee with sweetened condensed milk. I add half-and-half to the rich homemade soups that friends have made. I slather butter on my bread with abandon. I gulp down 2% instead of non-fat milk. I shovel down cookies made with real butter; dips made with sour cream and mayo; and desserts topped with butter-cream frosting. And let's not forget that chorizo.

It hasn't exactly paid off on the scales. I think I've gained a pound, and, apparently, that's from the thickening of my arteries, not my waistline.

So now I'm back to healthy eating with daily supplements of calorie-boosting Ensure. The high-fat diet was fun while it lasted.

Clarification: My cholesterol was so low last year (good genes) that, even with a big jump, I'm still in the "borderline" category.

Friday, February 15, 2008

Going Wireless

"You must get tired of constantly being poked and jabbed when you're a patient," friends often commented.

"Actually, no," I would explain while yanking out the cord attached to my arm (when I had a PICC line) or from my chest (after the Hickman insertion in July). I rarely felt the jab of a needle for a blood draw or the poke of an IV line insertion. Nurses simply had to hook up to the lumens at the end of my leash for a direct link to my vena cava.

Blood draws, chemo, hydration, medication, blood and platelet transfusions all came through my catheter. I even received my life-saving stem cells through the line.

But the ultimate patient accessory turned into my least favorite fashion accessory. I was reluctant to flaunt my PICC line in public and wore 3/4 length sleeves on the hottest summer days. After doctors swapped the PICC for the Hickman, I worried constantly that the hardware was playing peek-a-boo through my top. And I was forbidden to go into public pools or steam rooms (not that I was itching to do either with two feet of tether hanging out of my chest).

Here I am just minutes before the removal of my Hickman. Got chemo?

I'm pleased to announce that as of Wednesday, I'm wireless; I no longer need the connection. If a nurse needs blood, she'll have to get it the old-fashioned way - through a vein in my arm. I have no more dangling cords. I won't need daily flushes with Heperan or weekly bandage changes. My clothing choices will expand, and, YES, I will be able to return to the Kabuki Springs and Spa on my next trip to San Francisco (scheduled 2-23).

Paula once brought up the subject of what to do with an old Hickman. I believe she proposed creating a Christmas ornament or running over it repeatedly with my Prius.

The extracted Hickman catheter: The red mark is actually scar tissue. The length of cord below that mark (to the right) was concealed in my chest; the cord and hardware above was in plain view.

I have a few other ideas for recycling the Catheter:
  • Entertain Tiger and Heather with a new cat toy.
  • Paint it pink and create a commemorative bracelet.
  • Look for a pre-tween with a Malibu Barbie convertible and offer to make a gas pumping station.
  • Save it for a Fourth of July salute to the red, white and blue.

Suspicious at first, Tiger takes the bait, but soon grows bored.

I'm not quite ready to trash the contraption just yet. Who knows - it may end up being a prop for The Big C, Little C one day.

Wednesday, February 13, 2008

Rebuilding in More Ways Than One

I was very busy before I got cancer: running here, rushing there, attempting to cram 26 hours into a 24 hour day.

And then, almost overnight, my life contracted. "Quit your job," my doctors advised me. At the same time, I scaled way back on my volunteer activities. For the next ten months, treatment and recovery filled a big chunk of my calendar. I lived a full life, but, like most patients, I looked forward to that magical time when I would "have my old life back."

A funny thing happened on the way to remission. I realized that I didn't want my life back - or at least not the same one. Like the body I'm rebuilding this year, I have the opportunity to rebuild my life - one filled with more "want tos" than "have tos."

I'm finally doing the things I talked about for years. That includes taking Terrie Silverman's Creative Rites class, in preparation for that eventual Big C, Little C one-woman show. I'm hard at work on two book proposals. I'm also pitching freelance article ideas to magazines and am back to working a few hours a week as a marketing and PR consultant.

I've signed up for the City of Hope's Speaker's Bureau, have agreed to help with the Asians for Miracle Marrow Matches fall benefit and will return to the board of the Pasadena YWCA.

I feel passionate about all of these projects, both work-related and volunteer-related. And I still have time to exercise daily, garden, spend time with friends and family and even take the occasional nap. I'm a lucky girl.

Now, I know what you're thinking: "It's going to take no time at all before that girl is back to the same old running here, rushing there, pre-cancer life." I hate to admit it, but you're probably right. I'll have to resist the urge to take on too much, too fast. And I'll need to keep the "quality control" switch on to make sure I'm not bringing any toxic projects or activities back into my life.

I want both my "life gain" and my weight gain to be slow and healthy (no quick packing on pounds from potato chip and french onion dip binges). And, most important, I want to be able to know when to stop.

Wednesday, February 6, 2008

It's a rebuilding year.

Don't you just love when coaches use that euphemism? They could just as easily say, "We're gonna' get clobbered this year because we lost our star quarterback and every other starting player on the team." I prefer the hope and humility that come with the phrase "rebuilding year."

That's how I feel right now about my body. My cancer is in remission, but it's going to take some time to get back into shape. In spite of my grand efforts to stay fit, I've lost muscle tone. And, as you know, I'm underweight. My body mass index (BMI) of 16.8 puts me into the same category as an anorexic. But, so far, gaining weight has proven challenging. (Who said you can't be too rich or too thin?)

Most troubling is the continuing "slack skin" under my arms, on my back and upper legs. Every month, my crepe paper skin becomes more crinkly and grotesque. Ever since I found out that it's not a T-cell lymphoma, I've been in search of an explanation and a solution, but I've found none.

In September, I saw Dr. Sasaki, a plastic surgeon who makes the beautiful people of Pasadena even more beautiful. He recommended a non-invasive process called Thermage.

Today I met with my Pasadena dermotologist to see if she had any further explanations or recommendations. She saw me in August, but practically gasped when she saw my current condition, which she describes as "dramatic." Unfortunately, she, like Dr. Chang, had no explanation or solution. Her physician's assistant, who used to work with Dr. Sasaki, said that I was way past the point when Thermage could be effective. (The good news is that I just saved $10,000. The bad news is that I have no other treatment options.)

I agreed to let my doctor play "show and tell" with me by participating in the Dermatology Grand Rounds at the USC Keck School of Medicine in March. Local dermatologists bring in their "special diagnostic or therapeutic challenges" during the rounds. A panel of residents and full-time faculty members will examine our baffling conditions. Then the doctors will meet for "a didactic lecture and case discussions." It's the medical world's answer to "What's My Line?"

Other than the humiliation of participating in what could be a "dermatology freak show" and exposing the most hated parts of my body to a group of stranger doctors, I have nothing to lose. After all, it's a rebuilding year.

Friday, February 1, 2008

The Bucket List or Grumpy Old Men?

I haven't seen "The Bucket List," the Jack Nicholson, Morgan Freeman movie about two terminally ill cancer patients pursuing their must-do lists before they "kick the bucket."

But I feel like I was living the movie while I was at the VA Hospital in SF.

Bob, an elegant African-American man, was a natural in Morgan Freeman's role. Like Freeman's character, Bob would often dispense nuggets of wisdom in his trademark honey-coated voice.

And, just like in the movie, the rooms at the VA are "semi-private." Now there's the ultimate oxymoron, like jumbo shrimp or military intelligence. When two people share a hospital room, privacy doesn't exist.

Bob's roommate was an over-the-top Jack Nicholson character, at best a curmudgeon, at worst abusive. When doctors came in to perform a procedure several times a day, we could hear every curse and scream that spewed out of his mouth. And we heard him turn nasty with staff when his needs weren't met immediately.

Of couse, he could hear everything happening on our side of the curtain as well. When Bob and I met with his doctor, the roomie couldn't help blurting out his opinions. "You don't have to leave if you're not ready. They can't make you." When I asked the doctor if Bob would have a private room at the convalescent home, she admitted that she didn't think so, but didn't know for sure. He shouted out, "That means NO. Don't accept that as an answer."

Unlike the movie, the relationship between the two men didn't develop beyond repressed giggles and eye rolling on our side of the curtain. When we left, Bob and I wished the roomie well. I couldn't resist adding, "Don't let anyone get away with anything." I don't think I have anything to worry about.

Break out the Bubbly!

And the envelope, please.

One of my earliest posts nearly a year ago was about the anxiety associated with all of the unopened envelopes that come with cancer treatment. Yesterday was another envelope day with Dr. Forman. I came out a big winner with a clean chest X-ray, PET scan and CT scan. I was especially relieved to hear that the troubling, pre-transplant "hot spot" in my colon area has disappeared.

What comes next? Next month I'll have my tether (aka Hickman catheter) removed and will start maintenance Rituxan. For the next two years, I'll go in to the City of Hope once every three months for the drug tune-up. And I'll continue to check in every two weeks to monitor my blood counts.

I was a little disappointed to see that my previously high-flying blood counts had simmered down a bit. The WBC fell from 7 (normal range) to 3.2 (low). The platelets also dropped by more than 50% from 90 to 42 (low normal is 150). I'll use the word that Dr. Forman used to describe my platelets: tentative.

But, in spite of the falling numbers, there's nothing tentative about the joy I feel from the good news in yesterday's envelopes. I can enjoy another six months (until I'm retested) without "envelope anxiety."