I’ve been getting emails from some of you recently asking how I’m doing (thank you). I realize it’s been a minute since I wrote anything up here, and the last post was a bit of a handful.
The last week has been good though. Busy but good.
My hospice doc, Dana, is amazing. She has given us the kind of access you might expect from a close friend, not a doctor. And her knowledge of what happens to the body as it succumbs to disease is profound. The way she examines me, the questions she asks, have been deeper and more intuitive than anything I’ve encountered throughout the process of dealing with this disease. It is clear that she understands things that many docs don’t want to deal with.
When she came to check me out, she reassured me that what I was seeing was not, in fact a tumor.. it was a lymph node that was a bit swollen, but not hard and immovable the way it would be if it had a tumor in it. It was being pushed out most likely by tumor tissue growing in my pelvic bowl BEHIND it. So I am not looking AT a tumor, I am looking at something that a growing tumor has pushed into a different place. A semantic distinction maybe, but a comfort nonetheless.
Sadly, I am SEEING the progression of this disease. With that seeing, I have to admit that I am FEELING the progression as well. I am still on fire. I am still on an amazing creative high. I’m taking tons of photos, and am wildly involved in preparing for next weekend! But my level of pain has gone up a bit. I have been needing more breakthrough pain meds. And I haven’t had quite the same level of energy to push through the day that I did a few weeks ago. (This weekend, in fact, I will be making a switch in baseline medication just to be sure that when the pain gets worse as it is likely to do, I will already be on something that can handle it. That something being methadone! Big guns, gang!)
I wake up early. And I cherish it. But by 4:30 in the afternoon or so, I wish the clock would stop so that I could put on some headphones, listen to Steve Reich, and let it drop me into a DEEP sleep for a few hours, and then wake up without the TIME having passed, so that I could get up and keep rolling! Doesn’t work that way sadly. The clock keeps rolling whether you’re busy or on your back.
In just a week, the hand built bike show will be happening out in Brooklyn. That’s sort of the next big horizon. I’m working on a display. I’ll be showing three bikes. I’m going to resurrect the Assless.. it will be there! For you to see in person. The build that made its way from the Assless to the Hardass will go BACK to where it belongs and the Hardass will get a brand new build, so that it can be at the show as well. I am considering auctioning off the Assless.
Ok. Maybe I need to back up. INTERLUDE
All along the idea has been that the UTA (the Ultimate Tight Ass.. Ass bike #3 in this little series, which of course will ALSO be at the show) would be auctioned off when I am no longer able to ride it, and that the money would go to “cancer.” It was never clear where exactly that would be. I had been thinking cancer research in some way. But as I spoke with people and did a little research, I simply couldn’t land on anything where it felt as though the money would make much difference. It would be a little drop in a bucket by the time it got to the people actually doing the science.
Since my sudden emergency stay in the hospital a few months ago, my thoughts on this whole matter have shifted and clarified. I was introduced at that point to palliative care in general, and hospice care in particular. For those of you who don’t know what that is.. many don’t, palliative care is a model that focuses first and foremost on the patient’s immediate quality of life. Now, as a philosophy of care, this seems to me like a bit of a no brainer. I mean, shouldn’t that be the goal of medicine all the time? It isn’t, though. Even illnesses that are acknowledged to be terminal, in all likelihood, tend to be treated aggressively with a focus on extending life. This aggressive treatment often happens in a way that accepts a great deal of pain and suffering on the part of the patient as a necessary cost for a potentially “better” outcome. The goals really are quite different. Palliative care assumes that, especially if your condition is terminal, the focus should be on staying pain free and energetic for whatever time you have.
Not all doctors take the aggressive route. Nine months ago, when I told my oncologist that we had decided not to pursue further treatment, he said, “Okay That’s fine.” He was happy to keep following me and from there on out, he more or less took his cues from me on prescribing the meds that I needed to stay comfortable. It was a relief not to be under pressure to do chemo. But in retrospect, I realize that he brought no real expertise to the table in terms of pain or fatigue management. It wasn’t until April that he finally suggested that I might like to talk to a palliative care specialist.
Once I WAS hooked up with palliative care, and ultimately hospice care (end of life palliative care), I realized just how much could have been done for me during those winter months – by bringing that aggressive medical world attitude to pain management. I have felt far better since starting hospice care than I did all spring. I am energetic, I am mostly without pain, I sleep well (despite the urge to get up the moment I’m awake so that I can start getting things DONE!), and I do all of this without having to make trips to the doctor or to the pharmacy. All of my medications, delivered to my door, are covered 100 percent by hospice. There are no copays for the doctor’s home visits and no waiting rooms) and as I’ve mentioned, my doc is available! In most respects I am feeling the best I’ve felt in the last 5 years! I owe it entirely to hospice, and this palliative approach to care.
The fact that palliative care is not more visible and better integrated into the mainstream medical system is mysterious and troubling. Why do these two approaches need to be separate? Why shouldn’t a palliative care team be involved from day one? When you are diagnosed with a potentially terminal illness, it could be routine procedure to meet with a treatment team AND a palliative care team..who work together.. to see if they can beat the disease and at the same time keep you happy and comfortable and productive. This is stuff that really touches a nerve for me and it gets right to the heart of the philosophy of care and the education of our docs, NOT TO MENTION the education of the public about what is available to them in terms of treatment models and approaches.
All that to say. Hospice care, the Home Hospice Program of the Visiting Nurse Service of New York specifically, has done an amazing amount to make what are probably my last months not just bearable, but wonderful! They are a non-profit organization. The care that they are giving me is NOT entirely covered by reimbursements from insurance companies. They end up covering a fair amount themselves, and they survive through the generosity of their donors.
I plan to be one of those donors! It is important to me that they be able to continue the work that they are doing. I have also been looking into ways to help advocate for more awareness of what they do. In an ideal world it would be mainstream — something that everyone was offered and had access to, and that was fully covered by insurance. In the mean time, they need the help.
SO. That’s where the money is going. The proceeds from the auction for the UTA will go to them. AND this idea that I’m toying with..of auctioning off the Assless (who on earth would WANT that thing…), would also be done in the interest of raising them a little money. Perhaps you all would like to weigh in. Give me your advice.
Now. Where was I? END INTERLUDE
So that’s the show. The three Ass bikes will be there. I feel as though the three bikes tell an interesting version of the story of my last 5 years. Becoming a bike builder, getting sick, having to ride a bike with no seat, getting better, getting sick again, changing doctors, starting to ride the hardass, the hardass taking me to the woods!, the dreaming and scheming of the ultimate mountain bike, getting sick AGAIN – this time in the way that you don’t get better from – and deciding to drop what I was doing and go ahead and BUILD that Ultimate mountain bike (Ultimate, the word, suddenly taking on new significance). And all of this with unwavering support from the bike world – from the very start with the Assless, parts being donated by the companies that make them, simply to show solidarity and support. And finally this hand built bike show being dedicated to me! and a percentage of those proceeds going to the cause that I choose. The whole ride has been pretty magic.
I have been dallying on putting up a set of photos for sale this week. I’ve been very excited lately about shooting in general.. but particularly shooting medium format film. The response that you all have given me to the photos for sale has been a real boost. This last week has been a busy one, but I will get pictures up in the daily photos any minute now.. I’ve got a bunch from recently developed rolls of film.. there’s just the added step of scanning!
This week, for sale, I’m offering some medium format images of Putney in her three places, Putney Vt, Nova Scotia and Harlem, NYC.
These are images that I chose because I feel that they belong in print. Medium format film really is magic. Whenever I shoot it and scan, I wonder why I shoot anything else. And then I remember the speed and convenience.. the size of the equipment.. etc. BUT. I intend to be shooting a lot more film in the weeks to come, and in the meantime here are three shots from the archives (one never published anywhere before) of one of my favorite muses.
Fewer choices than previous weeks, but more prints available of each.
These prints are also quite a lot bigger than I have been printing. To really appreciate the detail of these big negatives (or transperancy in the case of the nova scotia shot), you really need to look at them bigger!
Hill’s new bike is here. I’ll assemble it tonight, and we’ll ride tomorrow. Life is good!
Thank you all.