I published a few stories of the courage and humor of my close friend "Allen", who is a long-term cancer survivor, on Pearlsoup. Pearlsoup is/was an eclectic little writer's site that was my first foray into the world of internet writing. Somewhat inspirational, the true legacy of Pearlsoup is that I met 4-5 of my closest internet friends there, as did others I know. I have a new chapter in Allen's saga, and this morning I checked, and Pearlsoup is no more (again!). I thought I would keep the Allen stories together in one place, and will be posting them here on the blog over the next few days. I met Allen in 2003. His stories date back to 2005.
THE "C" WORD, AND SIX MONTHS
(author's note: Allen was diagnosed in 2002 with non-Hodgkins lymphoma, and given 6 months to live)
Hell, Allen can be so hard to take sometimes. His bitterness floats to the surface and sprays the unsuspecting friend or coworker. You are so accustomed to his goofiness, his laughter….you never think that his acid tongue might be the result of all that pain. He can lash out at you, at a coworker, at the management....it's been his undoing. I want to scream at all of them...do you have any idea how much pain he is in? He is currently wearing the "75" morphine patches. The next "size" up ....100 is the largest available. He needs these now but won't wear them. For him, it's the end if he succumbs.
The doctors pretty much told him he was doomed initially in 2002, when they gave him 6 months to live. Since then, they’ve tried one experimental treatment involving irradiated mouse cell matter, another round of chemo, a whole month of radiation. I watched him come to work every day after radiation. He was a little tired, but indefatigable. The chemo was harder on him. The first round in 2003 had been a lot easier. This round seemed cumulative; it sapped his strength. Still he worked. He had a kid he needed to see graduate from college, and a big jolt of bad luck in the employment marketplace had reduced his bank balance to nearly naught….through it all, he always found some kind of work, he, who had been a leader in pioneering health maintenance organizations on a national scale. He made a big mistake when, after lending for a few years, he left the big corporate company where he made a pretty good living, and moved to the little entrepreneurial company.
It never occurred to him that the little company wasn’t big enough to have to give FMLA, didn’t have any short term or long term disability insurance. Those of us who grow up in corporate America tend to take those things for granted. Why would he worry…he has no family history of disease, he was a gifted athlete in good shape, never smoked, never drank alcohol. Who would have thought that, wasted by non-Hodgkins lymphoma, he would find himself without disability insurance, without a job (laid off, employer won the unemployment hearing because they termed his bitterness at work “misconduct”)…his money gone to pay for the treatments and the meds.
For 6 months prior to March of 2005, he ate holistically, took tons of vitamins, exercised as much as possible, and started to feel better. When he went to the world famous cancer center, it was with the thought that he’d improved his tumor markers to the extent that he might be a candidate for a stem cell transplant. I don’t think he gave up, gave in and decided not to work anymore until they told him the transplant was not in the cards. The hard part, the crying, was for when they issued, at the world famous cancer center where he has treated for over 3 years.......him a new handicapped parking pass. They gave him a pass for 6 months. When he asked why such a short interval, they bluntly admitted they didn’t think he’d need it longer than that.
Despite their lack of optimism, despite the loss of the transplant, Allen vowed to take charge of his own destiny. It is 5 years since they issued him that parking pass. He got a new one from his doctor last week for all of 2011.