I haven’t made a post of any particular substance for a while. Yet, a lot is happening. A lot has changed.
Nearly a month and a half ago I landed in the palliative care wing of Mt. Sinai hospital because I had a spike in pain that felt like a real game changer. I don’t think it’s any coincidence that this happened right around the 6 month mark. That is to say, the point in time about 6 months after the doctors discovered in a PetCT that my cancer had metastasized and were giving me 6 – ? months to live. During my stay in the palliative care wing the doctors DID opt to take a look at my pelvis (the area of the most pain) and discovered some very aggressive tumors that had not been there 6 months earlier. At that point, when asked, they said that we were talking about weeks to months. Just writing this down – recapping it in this way – is a strangely sobering exercise and is honestly taking me by surprise a little.
I don’t FEEL as though I could drop dead any moment. I am on a LOT of pain medication, but not so much that I am high or drowsy (though I have to admit that as I sit here writing this.. in the bathroom.. multitasking.. performing my strange gut emptying procedure, and perhaps giving you a little more information than you care to have.. SOMETHING is making a me a bit drowsy). To the point, though. I am in hospice care now, and the team that is working with me has managed to get me on a cocktail of drugs that are mostly keeping the pain at bay and leaving me with the energy and the clarity to DO things. Now that I am better medicated, I am realizing that for quite a bit of the spring I was struggling under the load of a lot of discomfort. Unnecessary discomfort! The physical and emotional drain of chronic pain is easy to underestimate and it can grow at such a sneaky rate that you aren’t even aware of what’s happening.
I feel that I should be clear. I don’t feel GREAT. I DO get tired, I AM weak, and I DO still have pain that finds it’s way to the surface and can be quite debilitating. BUT! For a guy who is supposed to be very sick, I am wildly active! I’m playing pool most days. I’m cooking dinner most days (and lately have actually had a big surge of excitement and creativity around it – for sunday night dinner last night, a butterflied leg of lamb with mint and pistachio pesto, with grilled summer squash umami bombs – instructions for the latter coming soon). I’m dreaming up strange little projects in the shop. I’m printing and selling photographs at a rate that is leaving me shocked. Humbled. Grateful. Yesterday I spent the day printing/packaging/labeling some 70 odd prints!
I am feeling sure that I would not be where I am right now if I had gone with the “no brainer” decision to treat my cancer aggressively. Obviously there is no way to know, but my gut tells me (my poor afflicted gut, which so far has never been wrong!) that had I opted to continue aggressive treatment I’d already be dead.
I have a lot I’d like to say about this. This is a start. I am so very happy to be alive. I am so very grateful to continue to have the energy to PRODUCE.
Hill and I both are feeling as though any fund raising that we do (UTA!! the auction will begin before too long! More on that shortly. And a few other things), and any awareness/advocacy work that we do should be done in the service of raising awareness about a palliative approach to terminal illness and trying to make it an earlier and more natural part of the conversation, instead of simply a last stop before you die.
Perhaps I should start by explaining my current situation. It’s my guess that many of you have only a hazy idea of what hospice care actually is! Maybe some somber notion about what happens to you when you’ve decided to just throw in the towel, tuck yourself into bed, and wait for death to find time to swing by and scoop you up with his scythe, or whatever it is that he does. Maybe you imagine a live-in nurse who changes your bed pan and keeps you company from a rocking chair.. cold washcloth at the ready for your forehead.. maybe reading you Robert Frost poems or something. * As I write this, I realize that that vision of it may very well eventually be what hospice care IS for me, and it will be really lovely when the time comes! Perhaps a foot rub and some Chopin nocturnes (eventually I’m going to need a very nice stereo in my bedroom..). BUT! I’m not there yet. And that isn’t, by default, what hospice care is.
I am currently under the care of the in home hospice program of the Visiting Nurse Service of NY. Theirs is not the only hospice program in the city, but it is certainly the largest. Once you enter hospice care (and you DO have to qualify to do so.. a doctor has to verify that you have less than six months to live.. I was a shoe in), they take care of absolutely everything. My appointments with my doctor and my nurse happen here at the house. They take care of prescribing all medications and those medications are delivered to the house as are all of my colostomy supplies. That is to say, everyone/everything comes to me. I do not have to go in to the hospital or doc’s office.. I do not need to wait around in waiting rooms. There are also NO copays for any of the visits, or medications (and here I should point out that VNS is a NON-profit organization that survives partly through compensation from the insurance companies for the services they provide, but mostly through donor giving). The other day I spent my morning paying the last 6 months worth of medical bills (I like to do things in batches), and except for whatever stragglers dribble in as the system catches up with my current situation, I SHOULD never have to pay another medical bill! The doctors and nurses (in fact the entire staff of the hospice program, which also includes social workers and chaplains – they have not sent a chaplain by yet) specialize in end of life care. The treatment goals are decided on a case by case basis with each patient, but the main thrust of hospice care, of course, is to make quality of life everything that it can be as the disease takes its natural course. For me, explicitly, the goal of their interventions is to make me as pain free as possible, WITHOUT putting me in a drugged stupor that keeps me from being able to be productive, and even more importantly keeps those close to me from having access to ME. This goal turns out to be one that can only be achieved with pretty frequent adjustments. VNS has a 24 hour a day 7 day a week phone line that they encourage us to use for anything at all that comes up. My angelic wife has done most of the talking on the phone, but it has been her experience that the system works very well. If she requests a call from the doctor or nurse, she gets one in minutes, not hours (certainly not days).
In short, I am being very well taken care of, and it is happening in a way that takes up an absolute minimum of my time.
I am writing all this down, and recapping it in the way that I am, because I feel as though I have entered a very distinct new phase of my life. I have been dealing with this disease for 5 years now (three days from now will be the anniversary of my original diagnosis). At no point during that time have I felt as though I was out of the woods. There have been periods of optimism, for sure. But it has never stopped being the reality that I have a terminal illness. 7 months ago or so it became pretty clear that it WOULD be the thing to kill me. And more recently, after my stay in the palliative care wing, it became clear that it would probably be pretty soon.
So my attention is on the short term. I am thinking up all sorts of short term projects. Things that I can get accomplished in a week or two. These batches of photos. Pill flasks. I don’t want to throw out any sort of one day at a time type cliche, but the horizon is definitely pretty close. I’m thinking about what little thing to make in the shop after the pill flasks are done, and what amazing meal to make tonight, but I’m not thinking so much about what I’ll make for thanksgiving this year.. and I’m certainly not trying to talk Hillary into having children with me (which for me is the biggest heartbreak of this whole fucking thing. Really.)
I sometimes wake up in the middle of the night and can actually FEEL the tumors that are growing in my pelvis. I can feel them pressing on new and different things.. that one is making it harder to pee, for instance.. And in those wee hours of the night I sometimes wonder whether I’ll actually live until the end of the week. But in the light of day, I am usually on fire!
More soon. Time to finish go finish up last week’s photo shipping and get down to the shop.
Fast Boy out.
* addition that I made last minute that somehow didn’t make it into the post.. (along with the bead-pan typo correction. Sorry gang.)