I'm now about two weeks into what I figured would be a month of recovery, post surgery. In some ways it's going really well, and in others, the picture is more mixed. I now have a home health nurse that comes everyday to change the dressing on my surgical site, and attend to an open area where the graft failed to take. Of course, there had to be a new hole, after all, it's me we're speaking of here.
My stay in Bloomington Hospital of two days was alleviated by a great nurse named Nancy who was smart and engaging. It wasn't so bad. I had my own room, a big bathroom, no view, but more channels on cable than I get at home, so I watched House Hunters until I could no longer stand: "oh, it's so small", and "I don't like that wall color", and "but where are you going to put your clothes" (in a closet the size of a house in Mexico, of course).
What surprises me is how old I feel, how this surgery, this time, really knocked me back on my ass, physically. It will go this way, now. I'm not the guy I was in 2013 when surgery was like a whatever on my way out of Cancerland. I know more, a lot more, and I'm about 1/2 the size of that fellow. So I shuffle around the house in slippers and a robe, sweats sometimes, usually no shirt under the zip up sweater I got from my good friend Polly Prissypants on my last birthday.
I've been on percoset for pain control, but pain has been happily very limited. I use it more for the excrutiating sensitivity I feel when the home care nurse is cleaning some of my surgical site, where the nerve endings are raw, occasionally exposed, and not very happy about it. The percs, as you might imagine, put me to sleep, and what where naps are now more like day sleep. I'm living a semi-Dracula life, but I've mostly been able to sleep at night, too. I sleep so much of late that my blood pressure is tacking lower, which feeds into the sleep cycle.
So, I'm taking some measures to prevent falling into an accidental coma from my love of Big Z. A bit more coffee to raise my blood pressure, a small project each day to complete to keep me from being completely useless. Reading (between Venetian history and a sweeping survey of the Plantegenet kings and queens of England, and upcoming, Chris Bayly's book on the birth of the modern world, thanks to a recommendation from Michael Dodson, the very kind and competent Director of India Studies at IUB).
I am older, and I am older than my age, and this has happened so gradually that it didn't occur to me until I faced it wounded, tired, and needing to heal. So I find my strategies have to change to reflect this reality: I have to work in smaller units; I need to rehabilitate slower, more patiently; my goal posts must be closer together.
Tomorrow, I go back to chemo one week earlier than I expected--it's a good thing socially. This is where I get my biggest kicks of the week, usually. Messing with the nurses, running the joint, playing Salt-n-Pepa videos on the Ipad as they push the 5FU into me--it doesn't sound like much I'm sure but it truly is a place I feel safe, and confident, a place where I'm accepted with my quirks that draw no discernible judgement. More importantly, it's a place where we all have one goal, to save me. I hope you never have to find out how important such a place is to have in your life.
Lately, the mail has been bothering me because every iteration brings a new message from the insurance company. They've managed to request information on virtually every thing I've had done to me this year. They've contended, tried to reject, pushed, pulled and popped every objection they could find to just paying the damn bill. News flash, Anthem BC/BS: I have stage 4 terminal cancer. I will never be cancer-free. My cancer has not progressed, it's simply persisted--so please stop trying to reject paying for the chemo that has allowed me to achieve that balance over a highly aggressive killer strain, ok? It would do wonders for my overall health if you would just shut the fuck up and pay--I mean, come on--doesn't the CEO make a heft multi-million dollar salary with flagrantly enormous stock options? Please don't try to poor mouth me to an early grave. Trust me, you won't win.
Too, I'm now eligible for Medicare which takes effect in August. So, I'm getting all those mailings about signing up, choosing a presciption plan which I believe will be like getting plowed dry, no kiss afterwards. I want to tell them, thanks, but let's wait to do this when I feel more competent, and less overwhelmed, but the grind of bureaucracy never fully meets the reality of individualism. I will say this--they are being incredibly efficient about it, so it's best I think if I take my own advice, STFU and motor on through the process.
I have met reality, I think, and I'm likely better for it overall. I've had some dark thoughts about this recovery because my expectations of myself are not tempered by any parameter of Mark with Cancer--I'm still Mark who Aspires, not Mark who is OLD AND TIRED! I'm still the guy who wants so much to know Turkish better, to finally not have to look up declensions of French nouns, who wants to flesh out my ancient German from early undergrad, who wants to know the modern world.
In my mind, I'm mowing the grass and gardening, and laughing and talking and the dogwood tree in the backyard is beautiful as I'm doing all of that. Rally is running away and I'm chasing him full speed, and when I put a leash on him, we go to Cascades Park and ramble around the stands of trees for an hour or so, up and down the steep ridge. Oddly, that vision doesn't depress me at all, as I sit in a very different reality; it gladdens every part of me. That I had that life, at one point, and enjoyed the hell out of it, makes moving into a new phase more exciting, more interesting, more provocative. I wonder how I will accommodate this new Mark, how he will figure out the method to a full life going forward always, with cancer, like a marriage that works but no one knows quite how.
Thursday, April 30, 2015
Monday, April 20, 2015
A Brief Message 'round Midnight.
I surprise myself again. Today I was down to two Percocet from the allowed six. I'm not having pain so much as scrapes and chronic aches.
I've been sleeping a lot but dreaming of what? I couldn't tell you. My head is alive in an alternate universe at the moment. If you see me driving a car, get out of the way. I've been spending the days in my bed, which at the moment is charming and warm. I know I'll chafe against the bars soon enough; for now I just want to heal.
The day Charles brought me back from the hospital was glorious--80, light everywhere. Even the ruins of last year's garden looked good. Rally was sweet, he could see that I was hurt and he kept--and keeps--both company and watch. He treads me carefully.
I have a drain, a huge amount of gauze and pads soaking up the afterglow of surgery. I don't know when it will all fall out or be satisfied that it has drained and wasted me enough.
I was touched, very much so, by all the well wishes from so many healthy faces on Facebook. A simple recognition beats a complex social game every time. And simplicity is my new theme.
Today I saw the plastic surgeon for follow up, which meant tedious dressing changes, but he ended up 95% happy--5% witnessing a hole develop at the top of the graft where the muscle pulled away. It's to be monitored and cared for for the great ladies of Wound Care. I have confidence.
That high percentage of satisfaction too means that I exceeded expectations yet again! And he called me tough, which was a nice compliment.
Anyway, I thought a brief synopsis was in order and a bit of bragging and a big thank you for the real fuel that keeps me going.
I've been sleeping a lot but dreaming of what? I couldn't tell you. My head is alive in an alternate universe at the moment. If you see me driving a car, get out of the way. I've been spending the days in my bed, which at the moment is charming and warm. I know I'll chafe against the bars soon enough; for now I just want to heal.
The day Charles brought me back from the hospital was glorious--80, light everywhere. Even the ruins of last year's garden looked good. Rally was sweet, he could see that I was hurt and he kept--and keeps--both company and watch. He treads me carefully.
I have a drain, a huge amount of gauze and pads soaking up the afterglow of surgery. I don't know when it will all fall out or be satisfied that it has drained and wasted me enough.
I was touched, very much so, by all the well wishes from so many healthy faces on Facebook. A simple recognition beats a complex social game every time. And simplicity is my new theme.
Today I saw the plastic surgeon for follow up, which meant tedious dressing changes, but he ended up 95% happy--5% witnessing a hole develop at the top of the graft where the muscle pulled away. It's to be monitored and cared for for the great ladies of Wound Care. I have confidence.
That high percentage of satisfaction too means that I exceeded expectations yet again! And he called me tough, which was a nice compliment.
Anyway, I thought a brief synopsis was in order and a bit of bragging and a big thank you for the real fuel that keeps me going.
Thursday, April 2, 2015
The Joy in Mudville
It finally reached 70 degrees in Bloomington, which is the sign that we've nearly completed our transition from Winter to Spring. There may be freak snow, a bit of frost across the grass in the morning, but we are on our way to 100% humidity and 90 degrees.
I have always found the transition of these seasons to be difficult; my body feels like it's been cut in two and moves in different directions. This year, I suspect the difficult transition has made me constantly tired, constantly sleepy, sluggish when I'm up and diffident to depth when I sleep. My trach tube is full of the--wait for it--effluvia and difficult to deal with...for some reason none of it wants to leave. This is a nice house, it seems to say, and we are in it to win it. This, and only this, is why I fear death by choking,
The next surgery has its schedule--April 15. You pay your taxes, I pay my cancer dues. I'm apprehensive about the recovery period, how I heal where they take skin for grafting, how I heal where they put a drain in my back from the muscle they pull around the body, how it will be once Krakatoa, my personal volcano, is cut out of me. I suppose this is normal apprehension, but it feels like prediction--bad omens circle me (I've been watching I, Claudius, on Huluplus, so forgive me the Roman reference).
Good omens, though, come in the form of my niece who proposes to visit with her Batman-obsessed husband, and children, and another of my nieces, and potentially her boyfriend. So I get to make a lunch for Easter, an Indiana throw down of chicken and ham, potatoes in some format, maybe some steamed asparagus or cauliflower. The Easters of my far younger days were spent eating...ham, potato salad, those oddly sweet little gherkins, black olives from a can. All of my basket's chocolate in one day, of course, and part of my brother's.
Now that I can't eat or drink normally, I enjoy seeing other people do it. I'm like a tourist at a luncheon party, one who has visited before--I know where the landmarks are, and on this trip, I want to see how the natives live. I'm fascinated to see what people choose to eat, how much of it, what works and what doesn't in the cookery. As a cook, I want people to love what I make, though not being able to taste it is a great disadvantage--but no more so than those people on "Chopped" who inexplicably make sauces out of the grossest combinations of ingredients and then don't taste it before the judging. That's either excess ego or excess stupidity.
I haven't thought much of my life post-surgery this time. The last time, the major surgery, I saw myself as returning pretty much to normal, albeit 85% tongueless. I rather thought I'd just be Mark again. I woke thinking I looked the same, I acted as if I was him. I never want to go through the experience of such a let down again. So I don't think of what will be, I think of what is. I'll still have the Scream Mask mouth, I'll still drool, I'll still have the neck hole, I'll still have the numb feet. I'll still be the Frankenstein, and for a couple of weeks, my chest will resemble his rather full cloth. There will be surgical staples (ugh, gross), and drainage and whatever vulgarity cancer can throw at me.
What won't be--a tumor that is potentially releasing it's constant toxicity into my bloodstream and it's errant re-programmed cells into my bloodstream and lymph system. For this alone, everything is worth it. This is the first real step to control, given that frying me like a KFC special and bathing me in chemicals week after week have gotten us just to the point where this is possible. Control means the balance isn't just me on the light side of the seesaw. It means 70 is more possible than it was.
After two years of fighting, I'm amazed. That every day has required me to act and think 100% to the positive side, to physically ignore that I'm tired, to try to be part of life as it swims all around me. The surgery offers the possibility of a second gear, a place where I can rest a bit. By rest I mean my mind, the true battleground of cancer--there's the possibility I want have to manically support myself and cheer for myself and attaboy myself every damn minute of the day--that I can daydream, and wander and think and plan.
Lately, I've been walking in mud, living in Mudville, napping hours and hours per day. My mind needs some refreshment, some visual stimulation, something that the 14th Century, a biography of Catherine the Great, binge watching (rewatching) the X Files, or reading about Indiana's weird grasp of discrimination don't offer.
The joy in Mudville is that I've nearly waded through it to the outskirts. Where the normal people live. And if they chase me off with torches, so be it. My creators, in their shiny medical castles, will always welcome me back. I'm big business, and a whole lot of fun to chop up.
I have always found the transition of these seasons to be difficult; my body feels like it's been cut in two and moves in different directions. This year, I suspect the difficult transition has made me constantly tired, constantly sleepy, sluggish when I'm up and diffident to depth when I sleep. My trach tube is full of the--wait for it--effluvia and difficult to deal with...for some reason none of it wants to leave. This is a nice house, it seems to say, and we are in it to win it. This, and only this, is why I fear death by choking,
The next surgery has its schedule--April 15. You pay your taxes, I pay my cancer dues. I'm apprehensive about the recovery period, how I heal where they take skin for grafting, how I heal where they put a drain in my back from the muscle they pull around the body, how it will be once Krakatoa, my personal volcano, is cut out of me. I suppose this is normal apprehension, but it feels like prediction--bad omens circle me (I've been watching I, Claudius, on Huluplus, so forgive me the Roman reference).
Good omens, though, come in the form of my niece who proposes to visit with her Batman-obsessed husband, and children, and another of my nieces, and potentially her boyfriend. So I get to make a lunch for Easter, an Indiana throw down of chicken and ham, potatoes in some format, maybe some steamed asparagus or cauliflower. The Easters of my far younger days were spent eating...ham, potato salad, those oddly sweet little gherkins, black olives from a can. All of my basket's chocolate in one day, of course, and part of my brother's.
Now that I can't eat or drink normally, I enjoy seeing other people do it. I'm like a tourist at a luncheon party, one who has visited before--I know where the landmarks are, and on this trip, I want to see how the natives live. I'm fascinated to see what people choose to eat, how much of it, what works and what doesn't in the cookery. As a cook, I want people to love what I make, though not being able to taste it is a great disadvantage--but no more so than those people on "Chopped" who inexplicably make sauces out of the grossest combinations of ingredients and then don't taste it before the judging. That's either excess ego or excess stupidity.
I haven't thought much of my life post-surgery this time. The last time, the major surgery, I saw myself as returning pretty much to normal, albeit 85% tongueless. I rather thought I'd just be Mark again. I woke thinking I looked the same, I acted as if I was him. I never want to go through the experience of such a let down again. So I don't think of what will be, I think of what is. I'll still have the Scream Mask mouth, I'll still drool, I'll still have the neck hole, I'll still have the numb feet. I'll still be the Frankenstein, and for a couple of weeks, my chest will resemble his rather full cloth. There will be surgical staples (ugh, gross), and drainage and whatever vulgarity cancer can throw at me.
What won't be--a tumor that is potentially releasing it's constant toxicity into my bloodstream and it's errant re-programmed cells into my bloodstream and lymph system. For this alone, everything is worth it. This is the first real step to control, given that frying me like a KFC special and bathing me in chemicals week after week have gotten us just to the point where this is possible. Control means the balance isn't just me on the light side of the seesaw. It means 70 is more possible than it was.
After two years of fighting, I'm amazed. That every day has required me to act and think 100% to the positive side, to physically ignore that I'm tired, to try to be part of life as it swims all around me. The surgery offers the possibility of a second gear, a place where I can rest a bit. By rest I mean my mind, the true battleground of cancer--there's the possibility I want have to manically support myself and cheer for myself and attaboy myself every damn minute of the day--that I can daydream, and wander and think and plan.
Lately, I've been walking in mud, living in Mudville, napping hours and hours per day. My mind needs some refreshment, some visual stimulation, something that the 14th Century, a biography of Catherine the Great, binge watching (rewatching) the X Files, or reading about Indiana's weird grasp of discrimination don't offer.
The joy in Mudville is that I've nearly waded through it to the outskirts. Where the normal people live. And if they chase me off with torches, so be it. My creators, in their shiny medical castles, will always welcome me back. I'm big business, and a whole lot of fun to chop up.
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