Sprinting Towards 60

Another cycle of chemo down, one to go until they scan me to see if new drugs are diminishing the new tumor in my remaining, right supraclavicular node. The day of and day after chemo aren’t a problem except for insomnia from steroids. Usually by Sunday the frenetic energy starts dispersing and I can once again spend the night sleeping.

On this beautiful spring day in SoCal, the drugs and their side effects seem well worth it. Having passed 27 months since diagnosis, I am tickled to still be here. We’ll celebrate my 59th birthday next weekend during another road trip in our RV, Maeve. Joan, the dogs and I venture to Death Valley for sightseeing, photography and togetherness in a stark, bright landscape already up in the 90s.

Here’s hoping for starry nights and peaceful mornings on the kick-off weekend of my last year of Sprinting Towards 60.

Joan and I traveled to Maui for our biennial 2-week vacation there. Awaiting us were leaping whales, rain forests, umbrella festooned drinks and ocean warm enough to bask in (even in January). This time we were relaxed into puddles of coconut butter by the 3rd day; a record! Then, on the day we were to drive that long, tropical twist that is the road to Hana, I checked my email to discover one I’d missed from my boss, Miss Z. She had just accepted a more lucrative job and her last day would be a day after my return to the office. Half way to Hana, as Joan and I slurped shave ice at a roadside stand, Miss Z called on my cell to fill me in. I was left saddened, but certainly understanding her decision. Oh well, Joan and I had another 10 days left in Maui. We vowed to focus on the present, not life after return to reality.

I returned to work on Tuesday, 2/5 after an early morning PET scan and a scant 3 hours of sleep the night before. The piles of work awaiting me didn’t surprise me at all. What did surprise me: how bereft I felt visiting Miss Z’s empty office and realizing the brilliant little fireball occupying it would soon be gone. It’s the complex relationships that sneak up on you; my 5 1/4 year working relationship with Miss Z went through many highs and lows (often in the same day). It wasn’t always a sunny relationship, but I’m grateful for what I learned throughout its duration. I’m also grateful that Miss Z and I avoided killing each other in a whirl of red hair, sparks and thunder.

I thought Wednesday would be better. It wasn’t. I started out rested and calm, intent on plowing through accumulated work, attending back to back meetings and calming down my somewhat alarmed staff. Then the email from my oncologist, Dr. B, arrived with not-so-happy news. She asked me to come asap to discuss a new treatment plan. Darn! More chemo…and just when I was digging having hair again.

Dr. B set me up today with a new plan, and part of it is exciting. There’s a new drug called MetMAb, now in Phase III clinical trials. Dr. B will bring up my case with the lung tumor board next week. If they concur, she’ll help me apply for the trial. Since qualifying will take time, I’m to start 2 new chemo drugs next week, Alimta and Avastin, since my last chemo session on the old regimen resulted in an emergency 3 day hospital stay. Her comment on giving me more carboplatin/taxol, “the next time would be death.” We’re happy my oncologist would prefer not to kill me. Yet.

So, I’m feeling like a survivor. So far, in the last 2 weeks we survived: the road to Hana, the loss of someone I was very fond of and a few vials of blood (not on the same day), AND the prospect of yet more chemo. But, there’s hope too. And hope, along with a modicum of curiosity, is what keeps pulling us down this winding, aggravatingly beautiful road.

My MRI results arrived just before we left for a road trip to Northern California. The good news: no sign of metastatic disease (AKA cancer). The iffier news: abnormalities in both cerebral hemispheres that I can’t pronounce. (Foci sounds like some kind of pasta. Make mine al dente!) I’ll return to Kaiser twice in the next 2 months: a consultation with a neurologist on the 1/11; a PET scan on the 2/5. More stuff to get through, nothing to keep us from our Christmas road trip.
After a visit with my mother and sister, then a pleasant visit with friends near the Anderson Valley, we drove to Caspar Beach and stopped to wait out a rainstorm in our RV, Maeve II, for a couple nights. We were cozy sleeping and lounging in Maeve, but I prefer a stronger spray than her shower provides. So, it was off to the campground showers for me.
The prospect of removing my clothes to wait in the freezing shower room for—hopefully—at least warm water produced far more anxiety than last week’s wait for MRI results. Of course, for the shower, I was naked and shivering at the time…and standing barefoot on a cold, gritty cement floor. Feeding 4 quarters into the coin-fed shower produced a long, blissful HOT shower; well worth the goosebumps. Sometimes waiting brings happy results, sometimes not. Either way, it seems the best way to get through the unpleasantness is to just get through it.

After the storm, we saw quite a few rainbows. Some of them were in unexpected places we passed; in sea spray off crashing waves; in mist rising off fern dells. We were able to take the highway all the way down to San Luis Obispo, which a landslide near Big Sur had prevented on the drive up. As many times as we’ve been up and down Highway 1, it never bores us. We stopped to watch elephant seals in San Simeon; something that’s become an annual ritual. Once again, it was worth the wait. Most importantly; we’re still here. Waiting for the next thing down this road we’re traveling.

2 years ago today I woke up from a medical procedure to some very bad news: advanced lung cancer. I was 56 at the time, and really didn’t think I’d change much at that age. Wrong! Cancer changed me, and most of the changes are quite welcome.

As the initial shock and grief faded, the positive changes began. I realized that even if I outlived the 12-18 month life expectancy I was given, life is very short indeed. Far too short to not enjoy every minute I have left to the max; far too short not to make sure everyone I care for is made well aware of it. Also far too short to hang on to anger, bitterness and disappointment long beyond the date of inception.

2 years later, I’m feeling fine; much better than I did when I got the awful news. I can breathe deeply and laugh hard without falling into a fit of painful coughing. The soreness endured through radiation treatments is less than a memory, and I got through nearly all my chemo sessions without discomfort or drama. My hair has defiantly grown back, twice as curly and a little bit darker.

Will the cancer that still lurks in my right lung get worse? Will I undergo more chemotherapy? All that remains to be seen. I’ll have regular scans every few months, hope for the best and enjoy this E-ticket ride just as long as they let me stay on.

2011 was a year of discovery, adjustment, and growth. For me, the year always held an air of suspense. At the end of 2010, my doctor mentioned the 12 – 18 months life expectancy statistics. I wondered: would it be 12 or 18 months? Even during the worst bits, I never lost the urge to hang around to see what would happen next. So I did.

The saddest part of 2011 was losing people who seemed too tenacious to ever let go of life. The hardest part was facing and dealing with the reality of an aging parent in need of medical care. The most surprising part was finding help and caring where I’d given up ever finding it. The most triumphant part was when medical treatments allowed me to breath without pain for the first time in years. The biggest challenge was prying off and discarding old resentments I never had time to carry in the first place. Again, nothing like that statistics-imposed ’12-18 months’ deadline to shake a sense of perspective into stubborn old me.

The deadline thing has an up side: my lifelong stance of cheerful hedonism finally seems justified. While I may not indulge in the same pleasure-seeking activities I did at 27, enjoyment is still to be pulled from life with just as much gusto. Decadently long bubble-baths, the rush of endomorphins after a good workout, the sound and smell of the Pacific, the excitement of photographing places never seen before, love for my wife and friends; all enjoyed just as intensely as those riskier activities of yore. Better yet, I’m no longer ashamed of loving wonderful food; who criticizes a cancer patient for having a great appetite? And shopping? Ha! Let them think, “poor dear, let her splurge in what little time she may have left.” Luckily, my wife, who also serves as the family CFO, doesn’t subscribe to this; she still expects me to roughly conform to a budget.

So, I’m looking forward to seeing what 2012 will bring. My mid-December PET scan brought a moment of relief with an aftertaste of anxiety. Relief for how the chemo has knocked back cancer activity in the originally affected lung. Anxiety over a tiny new spot at the base of my neck. Will there be more radiation, more chemo? 2012 should provide some answers. Meanwhile, I get to stick around for the duration. Waiting to see what will happen next.

12 months ago today, at approximately 8am, I underwent a bronchoscopy; a procedure my pulmonologist ordered to look for the cause behind the painful cough I’d had for nearly two years. When they wheeled me into the OR that morning, I wasn’t terribly worried. Instead, I was hopeful my doctors might discover what was wrong so they could fix the problem.

My OR nurse was a youngish woman with a big smile and a wry sense of humor. When I mentioned my wife in passing, my nurse made a point of mentioning the lady she’d lived with for over two years. Hey, jokes and bonding in the OR: sweet! When I went under, I felt secure, surrounded by an upbeat, confident medical team. I awoke to a more somber vibe. The nurse who had been so chatty seemed sad and suddenly had few words for me. When I saw her face, I remember thinking, “Uh, oh…this can’t be good.”

Back in the recovery area, a young doctor broke it to me: I had lung cancer, probably stage 3. He showed me pictures taken of the blockage to the middle lobe of my right lung. Having never smoked in my life, I was surprised and devastated by the seeming unfairness of it. The people I’d known who had lung cancer had died; painfully and in a matter of months. When Joanie came to check how I was, she found me alone in my curtained off cubicle, quietly crying and clutching bronchoscopy printouts. After yelling at the nurses for leaving me alone with such horrible news, she took me home. We took to our bed for the rest of the day, me shaking while she held me. All I could think was, “so this is how it feels when you find out you’ll be dead soon.”

Luckily, the next day came and I felt more myself. Perhaps not the jolliest form of myself, but definitely not the trembling, hopeless creature of the day before. Googling non-small cell lung cancer informed me life expectancy for stage 3 is 12 to 18 months, with treatment, not exactly cheerful statistics. Still, it looked like some people lived months; some going into remission, living a year or 2, occasionally 5. A few lucky souls made it years beyond that grim day of diagnosis.

12 months, 30 radiation treatments, and numerous chemo sessions later: I’m still here. I have less hair than before, but I’m neither shaky nor depressed. Frankly, I’m feeling pretty grateful. Saying I’m thankful for having cancer because of all I’ve learned might sound Pollyanna-ish. Let’s just say I’m thankful for all I’ve learned over the past year, however that knowledge was gained. I’ve learned how many true friends I have, and how much they mean to me. I’ve slowed down enough to enjoy those friends, my wife and my life more consistently than I did before November 26, 2010. While I previously gave lip service to the notion that life is precious and to be savored, now I feel it in my bones every day. Through friends who are living with cancer, I know that absolutely nothing is guaranteed with this disease. Following doctor’s orders and having a positive attitude seems to help, but cancer kills even those who do. So, we grab life while we can with both hands, great appetite and gratitude beyond belief. If all goes well, that’s exactly what I’ll be doing next November 26.

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.