Sprinting Towards 60

On September 8 my inspire.com friend, Lia Orlando, left this planet for good. She was 46, and had battled NSCLC since the summer of 2009. Her grieving husband, Mark, let her online friends know the next day. I read the news after I arrived in Utah on the first day of our vacation. I’d been thinking of her all day on the 8th, and planned to email her the next day from the road. Although I only knew Lia from her spunky online posts and emails, I still can’t think about her death without crying. I find this embarrassing; I feel that I don’t really have the right to mourn someone I knew so slightly. Embarrassing or not, I’ve put off writing about her long enough.

Lia’s feisty and caring nature attracted quite a few friends. She loved camping and being on the water, and looked forward to returning to outdoorsy pursuits. Robust in spirit even at her sickest, she made us believe she’d eventually lick the cancer. When she wrote in July of her doctor “using the H word” (recommending she enter hospice care), it pissed me off. It seemed they were writing her off prematurely, in essence burying this vibrant ball of energy alive. I’d managed to ignore how far her disease had progressed and how battered and tired the two-year fight had left her body. Whether or not we were ready to let go of her was never the issue; it was her fight, not ours. She fought hard, but when the fight was over, it was over. During her July hospitalization, we started referring to her as “Tinkerbelle,” telling her we were clapping for her to keep going. We never imagined her as the dainty, Disney-esque version of Tink but the passionate hellraiser J.M. Barrie wrote into existence in 1904. This 2011 version was just as playful, but was larger, tattooed, and rode motorcycles.

Whether she was wood sprite or woods-woman, I’m honored to have known her, even in passing.

You managed to fly off, Lia, but we’ll never stop clapping for you.

Getting Ready for Camp, 1966

June 26 marked the 7th month since my diagnosis of stage 3b non-small cell lung cancer. Life expectancy from date of diagnosis, with treatment, is 12-18 months. So, I’m a little shy of half-way there, if we’re going by the more optimistic figure. Of course, statistics are only statistics, not a finite rule applied to everyone fighting cancer. A number of people survive far beyond that bleak prognosis; I’ve met some who’ve passed the 7 year mark, a few even making 10 years and beyond. But, that’s rare.
With this in mind, I feel I should be getting ready for something substantial, like a journey to some unknown destination for which one isn’t quite sure what to pack. True, I feel fine, except for the cough and some shortness of breath. Much of my energy has returned, I’m sleeping well again, don’t have a fever and my scalp is sprouting baby-fine fuzz which just may turn into a full head of hair. Joan and I had a small crowd over for a barbecue yesterday. All day I received compliments of, “You look great!” Each sounded sincere, if slightly surprised. The unspoken sub-text seemed to be, “and YOU have cancer?”
The other thing people openly marvel at is that I continue to work. Since I do have a job, along with the financial responsibilities requiring me to keep that job, what else would I do? With exception of the few days recovering after chemo treatments, there’s been no good reason to stay home. Life is comprised of the whole experience, not just the vacations away from work. I’ve never been much good at compartmentalization. While I don’t share all my personal life with my work colleagues, work and the charactors populating it are very much a part of my life. While one tries to refrain from taking the stress of work drama home, work is part of it all. And…it really does make these long weekends extra special.
All my life, I’ve eagerly anticipated trips to places I’ve never been. Joan and I are planning a road trip to Mt. Rushmore in September. We’ve been pouring over maps and travel guides we picked up from AAA weeks ago. We’re even practicing erecting and breaking down our pop-up tent in preparation. By the day we leave, we’ll hopefully be well prepared for the trip ahead. We take as much pleasure in the planning and preparing as we do in the actual travel.
So, whether or not I’m half-way to whatever comes after this, or not, my focus is on getting ready. I’m not completely convinced there’s an afterlife, or reincarnation, or anything at all following this life. None of that is within my control. What is within my control is how much care and pleasure I take in preparation for the journey…which might not be a journey at all. And that would be true whether there were 5 months or 50 years left until day of departure.

Another Friday, another cycle of chemo. As last time, the steroids kept me feeling almost normal for the remainder of Friday and most of Saturday. Knowing that the steroids wear off within a day, I used the energy to cook an early dinner on Saturday…so early my grandmother would have classified it as ‘supper.’ Sure enough, the energy began slipping away after I’d eaten the last bite of spaghetti, and it was to bed with me for the next 3 days. Besides the exhaustion, the last treatment brought an itchy, scary looking rash to my entire scalp on Sunday morning. I was so wiped out, I half-heartedly daubed it with antiseptics and took it back to bed. The pillow didn’t complain.

The 5 days right after chemo seem to be the worst, and the exhaustion and other side effects seem to worsen each cycle. I suppose I should embrace this utter tiredness, which hopefully signals the chemo is killing off cancer cells. We’ll know how well it all worked after my PET scan on June 10. Still, it seems odd to be drifting through the gray afternoons with the bedroom shades down. This time I wasn’t able to sleep solidly, kept awake by worrying about work deadlines. I simply felt too tired to sleep. I finished 3 books during my convalescence, none of them were about cancer. When I slept, I had strange, stressful dreams. The last was about vacationing on a (non-existent) Caribbean island with terrible food service and obnoxious fellow resort guests. As pretty as the dream place was, I felt trapped among the monotonous conversations and bad dining. I awoke sweating and with arms aching from clutching my pillow all night.

I returned to work today and had to stop and sit down during the block long trek between the parking garage and my office. I felt about 95 years old. I really don’t think I’ve ever felt this weak. As feminine as helplessness and frailty are still viewed by some, it’s just not working for me. It’s very hard to accept in myself, even if it’s temporary and for a very good cause. I identify strongly with words like, “robust” and “gusto” and “alive.” I’ve felt none of those things the past 5 days.

This is just the dry-mouthed, itchy-scalped, too-spent-for-polite-conversation chemo talking, of course. If this cycle’s side effects mirror the last, my joie de vivre should return the end of the 6th day, which will be tomorrow. Joan and I will be traveling to Utah to open our vacation home for the summer. We’ll overnight at Joan’s sister’s in Mesquite, Nevada. We’ll know I’m back in business if my lust for video poker returns; Deuces Wild is this gal’s game. Tonight, the thought of gambling, engaging in romantic endeavors,  or devouring a (good) meal evokes a, “Meh…” in my nebbishy little post-chemo soul. By tomorrow night, the nebbish may have gotten so tired of being tired…he’s gone back to sleep until I need him again. Let’s hope I never do.

Last Saturday morning I woke up with much less hair than I’d gone to sleep with. It’d been very thin for months, due to the six weeks of chemo I had earlier this year. My oncologist warned me that the new cycles of chemo would get rid of the rest of it in 2 -3 weeks. Sure enough, it all fell out right on schedule.

Joan’s reaction was to burst into laughter (she does a lot of that). My reaction to her reaction was to burst into tears (I do a lot of THAT). Then I shaved off what few wisps were left.

The few friends who’ve seen the pictures of my head au naturale have likened me to Rachel Rosenthal. I’m not quite sure how I feel about being compared to an 84 year old performance artist, as brilliant as she may be. I’ll let y’all know.

Meanwhile, here is an tribute to my former head of hair. Long may it wave…after it grows back.

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Check out the hairdo...argh!

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All gone!

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Spring is here...and so am I!

Since my triple-dose of Carboplatin and PACLitaxel last Friday afternoon, I spent most of the week in bed. Friday night and Saturday passed without a wink of sleep, possibly due to the double-dose of steroids. By Sunday I was pretty much knocked out, sleeping through that day and the next. I can’t remember ever feeling so exhausted after having had so much sleep. A trip to the bathroom on Monday found me actually contemplating taking a nap on the old tile floor rather than tottering the 25 feet back to my bed. I slept through half of Tuesday, and all of Wednesday. Today was my first, full day back to work. The slight dizziness and ache in my joints is still present, but the rest of me is beginning to feel “all the way live” again. Unfortunately, the appetite has also come back; having cancer doesn’t seem to be a reliable substitute for attending Weight Watchers. Oh well, at least most food tastes like it’s worth the calories.
In my 20s I had a friend named Rose who once gave me a compliment I’ve cherished to this day. She used to refer to me as being “All the Way Live.” I knew my usually unchecked exuberance is a big part of me, at times having been made painfully aware that a little reticence on my part might serve me well. She was the first person to make me feel my blatant gusto wasn’t something to be ashamed of.
Today I drove home with the top down, relishing the bright verdure of Beverly Hills in Spring, listening to such cheery tunes as Everything’s Coming Up Roses by Ethel Merman, and smiling at tourists in a multitude of roofless tour vans. After nearly 5 days in bed, being outdoors was a treat…gridlock on Sunset Boulevard or no. I’m hardly up to riding my bike to work, yet (nor was I BEFORE I had cancer), but most activities sound more appealing than drifting through another day in a darkened room.
So, living through cancer isn’t all a sad affair. The low points are pretty low, but the highs are pretty swell.
Not receiving a verdict of NED (No Evidence of Disease) from my post-first line treatment CT Scan was pretty disappointing. High dosage chemo isn’t exactly a ride through Beverly Hills. But, it feels pretty darn good when the side effects start diminishing and the interesting ins-and-outs of life come into brilliant focus again.
I’ve been following a blog written by Linnea Duff, a woman with stage IV NSCLC who just celebrated her sixth year since diagnosis. Having never been NED in six years, she’s come up with another term, NDY, or Not Dead Yet. She’s still active as possible, enjoying her family and living on in Massachusetts.
So, my goal for the next year: to be NDY, and always…always All the Way Live.