Thank you everyone, who has donated to the Tiny House Fund for Sharon and me. And to everyone who’s still reading. It’s been really great to let some some of this stuff out into the world and know it’s getting read. I hope that some of it is helping someone with cancer because that’s the intent here, to help people with cancer.
Anyhow, along the way here, I’ve paused now and again to contemplate why I’m still alive. I mean, usually, stage IV pancreas cancer patients, like me, live about 3-6 months (Dr B, primary care physician, told me this about a year into it), and so I’ve often wondered why I’m still alive when 37,000, or so, other people who were diagnosed the same way, here in the US, in ’13 along with me are now dead.
The easy answer is that no one knows.
Also, I’m still alive because my daughter, Sophia, she taught me to be nice and to be patient with people, and that’s a gift that not many can give. I’m sure I’ve not fully received the teaching, and I hope I can absorb more. Patience counts a lot when you’re stuck somewhere between life and death for a year and a half. Nice counts for quite a bit too, when you’re depending on the kindness of other people to save your life. Luckily, Sharon (my wife) and Tom raised Sophia right.
I’m alive because Tom, Sophia’s dad, he mentioned, a week or so after diagnosis, that one of his colleagues had pancreas cancer, took 5FU and got back to work like nothing happened. I decided, when Dr R offered, to take 5FU rather Gemzar/Abraxine, and the 5FU worked. If I’d started with Gemzar/Abraxine instead, it might not have worked, the tumors might have grown instead of shrinking, and I’d be dead now. Luckily, Sharon had that conversation with Tom where he gave her that knowledge.
I’m alive because Dr U gave me a minute to wake up before he started talking. And in that minute I decided, looking around the room at 5 senior docs all wearing sad expressions at 7 am, that I would be happy and at peace with whatever they told me. Luckily, Sharon took me to the hospital when she did.
I’m alive because Dr D did acupuncture on me one day when I thought I might blow my head off in order to escape the pain. It was a pain in my back (the celiac nerve complex in the abdomen next to the pancreas often manifests pain in the upper right back) so strong that morphine couldn’t touch it, and I am not sure how I made it out of the apartment to the car and up the stairs to his office, but I stumbled in and Dr D pulled up my shirt and stuck about 3 needles (very, very few) into my back. Five minutes later, I felt fine. No shit. Magic. Luckily, Sharon had built a relationship with Dr D’s practice that goes back more than 10 years, and Dr D took care of me for free for nearly 12 months.
I’m alive because my aunt Cathy drove me to the hospital and sat with me each of 12 times I had infusion therapy there. It took all day every time, and I was wasted, almost dead after every one. She also bought me breakfast and lunch, when I could eat. Cathy also gave me company when I could talk. We talked about god and fear quite a bit. She was also terrific in that when I needed to sleep in the infusion chair and ignore the constant beeping of the IV bag monitors, she left me alone. Luckily, Sharon mentioned to me once that I might need someone besides herself to look after me that fall when I was doing infusions.
My pal, Timothy got me drugs to help keep me eating and from puking my guts out for the last 18 months, and that’s not nothing. Drugs that are effective at treating chemo side effects tend to be expensive, like about $350-1000 a month, depending, plus hassle costs like driving around and time and the uproar that this kind of thing can bring to a household. Some might include major civil disobedience and courage in these costs. Without these anti-nausea drugs, I’d almost certainly be dead now. Luckily, Sharon reminded me to call him and get things going.
While I’m talking about family, my mom, Lydia, and her man, Julian, deserve a mention. Between them, I think they’ve kicked in about twenty thousand dollars to help pay for my treatment. This is money that I absolutely do/did not have, and I had no other way to get other than to ask. Without it, I’d have long ago gone bankrupt or done without the treatment. And when the treatment is essentially poison, you have a huge incentive to just do without. I’d be dead now if they hadn’t given me that money. Luckily for me, Sharon said, can’t you just swallow your pride and eat some autonomy this once and ask?
Also, my brother, Sean, besides setting up the Indiegogo campaign that’s currently running, he gave me $500 a month, every month, from diagnosis until my federal disability checks began to show up. This money allowed me to pay rent. And that’s not nothing, having a roof over your head when you’re dying sick. Luckily, Sharon reminded me that I had family that I could count on in time of need.
Speaking of disability checks, I’m still alive because Social Security, that pinko commie system that we all are forced at gunpoint to buy into here in AmeriKa, well, it’s working for me. I paid into the system for 30 years, and now it’s paying me back. Who knew? I looked like death on wheels when I showed up there at the local Social, really skeletal, and I think that helped get my case approved. Luckily, Sharon figured out where the office for SSI is here in the STL and drove me there and filled out a million forms that I couldn’t even read much less work through.
I’m alive because I started practicing zazen in the early ’00’s sometime, not sure exactly when. This practice is simple: you sit in lotus (or your closest approximation) for 20 minutes and stare at a bare wall during which time, you might re-focus your attention on your breathing and your posture each time you find your mind wandering which is about every five seconds. This practice is guaranteed to take you to places you’ve never been to unless you seriously practice some other spiritual tradition (almost any will work if you do it hard enough, Christian, Muslim, Hindu, Indian, whatever). Because these places might be somewhat unfamiliar, it’s best to have a qualified teacher. Luckily for me, Sharon took me to the MO Zen center where Rosan Yoshida teaches and a visiting teacher, Brad Warner gave a talk one night, and I have been able to deepen my practice because of Sharon.
I’m alive because I’ve received excellent medical care at Mercy hospital and Mercy clinic where Dr B practices. Dr B got me admitted to the hospital in time to save my life, and for this, I owe him a debt that no one can ever pay. Luckily, Sharon convinced me that it was time to see a doctor when my stomach started to hurt real bad.
Infusion therapy costs about $12,000 per dose. I had 12 doses. When I went for my first infusion, I asked what it would cost. No one at cancer could tell me. I googled. Then I became discouraged because there was no way that I’d be able to pay for even one dose, much less a course of treatment that might be effective. It was a lot like buying a house without knowing the price, without ever seeing even a photo of the property, without even reading a description of what I’d be buying. No one could tell me. Debbie, a senior nurse in the infusion center, performed some magic on the phone with Anthem Blue Cross and got them to pay my bill. Without her help, I would have refused treatment, being unable to pay, and I’d be dead now. Luckily, Sharon had signed me up for insurance some months before.
Speaking of Anthem, these people live up to their contractual obligations. Although I’ve been insured by Anthem for maybe two decades, I’d let my policy lapse when I stopped working at the university and thought that I’d be unable to afford the cost on my own. I went naked for the first 3 years of my retirement from the computer business in order to start my writing career. When Sharon and I had worked to the point where we could afford to have me insured, Anthem was my first choice because they’d always taken good care of me. Currently, I pay about $150 a month for health insurance. With costs the ways they are (about a quarter to a half million dollars, that’s as close as I can guess for my own personal case), insurance is the only way I’m able to afford treatment without just walking away from my bill with the hospital that just got finished saving my life. Luckily, Sharon convinced me that I ought to buy coverage.
There are limits to insurance coverage. Some new drugs cost quite a bit when they first come out. This is so that the drug company can recoup development costs, which are enormous (think 100’s of millions for a single drug), pay their employees and play pinball again with the next development cycle. Therefore, when Dr F prescribed Xeloda (generic = Capacitabine), I was left looking at a co-pay of around $1600 a month. I took Xeloda for a year. To make up the gap between insurance and my co-pay, Jenny, the pharmacist at cancer, she got on the phone with Genentech, the drug company, and explained my case. They gave me the drug for free. Without this drug, I’d be dead now. Luckily, Sharon suggested that I talk to the people at cancer about payment, specifically, the social worker there, Carol who led me to Jenny.
If I begin, even for a moment, to consider the supply chains, such as who built the hospital, who made the tiles on the floors there, who cleaned the toilets there, etc ad-infinitum, I will have soon touched everyone on the planet. You are never alone. Always, there are other people here who are working their asses off helping you stay alive. I thank every single one of you who has ever helped me. Right now, this second, I see a phone, a computer, a coffee mug, a pair of scissors, a collection of drugs, a hardwood table, three chairs, one natural, one orange, one pink, and a beautiful view out the front windows, and I am sure that if I track back through the chains of people who have given me these things, I will find every one of you. Thank you. Luckily, Sharon has terrific taste and has brought me all these goods.
I’m sure there are other reasons why I’m still alive, but as far as I can see, the main reason is because Sharon, my wife, has chosen to give up some of her own life, her time, to think about the best ways to care for me and to then effectively execute those plans. And if you haven’t guessed, I’m not always the easiest person to work with.
Because of Sharon, I’m still alive.
Love you, baby.