Fighter/Quitter/Die-er

Let's establish some ground rules for reading this blog post:  I'll let you know it's up on Facebook but PLEASE, if you decide to read on from this opening point, DO NOT send me any message of sympathy for what I'm going through--I know you care, and I have avoided writing posts lately for the reason that I don't want to think I'm just trolling for support. I want to be honest about this experience and what's happening to me and not be an emotional suck hole. I leave that to other people who seem to have professionalized the technique.

I think I've gone through three distinct phases in cancer that I call fighter/quitter/die-er.

In the earliest days, after my first big surgery, my whole attention was engaged in fighting the cancer and regaining as much of my former "normalcy" as I could have--and I knew I couled do it! I was strong, I would become strong again. And frankly, there didn't seem to be any other response to make. I couildn't see why you'd start defeated by anything, even the Emperor of Diseases. I was encouraged in this attitude by most of my health care professionals, my family, Charles, and others who were involved in my life. It was right, and right for me.This blog  was born at that times and closely followed the fighter's creed of accentuating the postive and deriding the negative.

I have been in fighter mode for most of the past 2 and half years. And the mode still makes sense to me, except for denying the negatives, or at best, declaring them simple roadblocks. After pneumonia, I found I was truly diminished, and I began to wonder if I should quit being a simple minded ring boxer. If I should accept the negatives and try to learn to live with them better. Not as an enabler, but perhaps as a more strategic fighter--to keep ones friend's close, but one's enemies closer. To succeed in a new way by accommodating the changes instead of just trying to shut them out. They had become bigger, and burdensome, and impossible to just forget. A strategic fighter knows when to stragetically retreal, to strategically quit.

But in the middle of this back and forth transormation, a third phase started. The dying phase, the first inclincations that I have been so damanged as to be capable of dying far sooner than I thought. I can't walk very well, I pant unpon light (I mean light!) exertion. I sleep irregulary, fearful I won't wake up. Breathing is not esasy, seaonal change is a killer. I feel more pain, more bones creak, more diarrhea, less appetite, less happiness, less energy, less me.

While I feint, fight, quit, there is behind me a drain emptying, not nearly as far distant as I would like.  A drain I'm circling, unfortunately. This week, I told Dr. Dayton that I wanted one of the complications I live with to improve, just one. I challenged him to discover one thing that might make my life easier, give me a peg upon which to hang the electrolyte drip my optimistim needs right now. He's come up with one, and if it works, I'll let you know.

You an drive yourself mad trying to just be one person, which sounds mad, but somehow isn't. You can fight/quit/die all in a day, and I'm beginning to see that if you don't do those things, you're the crazy bastard. You have to face those mixed up phases in cancer, I think, you have to figure out the proportion of each day which will get, and surprisingly just throwing all your eggs into the fighter basket is about as much sense as monkey feces and the zoo. The fact that there's a zoo at all is gross; the fact that you can't believe a sentient being held prisoner there shouldn't throw shit is equally amazing.

Anyway, that's what's going on. I'm fighting to get some new space for optimism, I'm quitting just being a postive-mouthed fighter, and I'm trying to figure out how to prepay for my cremation and leave a list of account numbers and site passwords for Charles to suss out how many death certificates he will need. When should that happen? How should it happen? All I know is that I wish us both the best of luck in dealing with it. I face my fear of death as a fear of transition, from this life to that, to the pain of going, of reawakening, the pain of discovering how right or wrong I've been.

Don't cut me, dude

Surgery I too dislike it. 

There is a proposal on the table to improve my experience with the chest wound by possibly using artificial skin, to slow any progression toward blood vessels, and surgery that would pull muscle from my back or my stomach to cover it--though it's badly irradiated skin, and nothing may possibly take. I tend to lose at dice rolls lately, and I don't roll them if I don't have to do so.

I've met with the first surgeon, the one who would do surgical biopsies of the lumps that have reappeared on my chest. Still I wonder: why? Why biopsy when we know this is the cancer, bits of it throughout my system loding in my chest as opportune real estate--so why biopsy? I have no doubt of it, I don't think anyone else does either. 

I had a confab with the second surgeon, the one who would figure what to do with the wound--only he doesn't think there's much that can be done. The bad skin, the surgical risks, the probability of failure following effort, failure complicating yet another recovery period, He thinks not, and for the first time in the last couple of weeks, I'm pretty happy. 

I want to say this clearly: I will lose this battle with this cancer. It's not a treatable or removable cancer. What I' m doing is fighting for time, to enjoy what I have of life, to prove that you don't have to give up to be rational, reasonable and measured in the face of a killer. I won't give up, but it will eventually win. I just want it that eventuality to be some time away.

All along treatment, and wound amelioration, and hospital stays, and unexpected complications, I have kept this knowledge alive, even when people around me haven't wanted to hear it. I understand that; it's not my intention to spend a whole lot of time discussing it, but it's right, it's real, it's there. 

Dude, don't cut me! Help me live a little here!

The Caregiver, briefly

October 2nd, so far it's a bit overcast in Bloomington and Autumn is in the air. At night, it's been going down to the 40's, and I love that. This presages good sleeping weather for me--somehow I never feel that I surrender to the deep, lovely, embrace of sleep in Summer in quite the way I can when it gets colder.

Today is a special day because Charles turns 58, although he honestly looks 45 and has the keen optimism of someone even younger. I've made the chili, the gluten-free peanut butter cookies he likes and Rally is ready to lick him to death. His Facebook is flooded, evidence of a life spent collegially, peacefully, evidence of a long career mentoring, evidence of good nature.

Charles and I have, for 19 years, been family to one another; he's as much brother to me as Jim, as much confidant as anyone has ever been. There's very little surprise left between us, though in 2013, this cancer, it's speed and ferocity, was a shock to us both.

I've tried, over the past couple of years, to resist thinking of Charles as a caregiver, preferring to think that we were still partners in an adventure, that the adventure would eventually end, and there would be the new normal to fall back upon. A diminished Mark, a usual Charles, but still, well-tied and bonded by the passing of so many years.

It has been this year, I'm certain, that Charles has slipped more into caregiver than just safari buddy. I can't lift much, so he puts my pallet of water bottles into the refrigerator. I can't talk, everyone calls him. I can't clean much, he does. I'm exhausted most of the time, so he cooks for himself. He drives me everywhere--you don't want someone on a steady diet of opiods to be weaving through construction on SR 37.

He does all of this, and more I have enumerated, without griping. I take him away from work, which he loves, and there's no complaint. He goes to the store for me without snark, he checks on me when there's no one else who would do it. He fusses at me when fussing is very comforting.

Todaty, October 2nd, is a Friday, and he's at chemo with me, so he can hear what the doctor has to say about the biopsy coming up, the surgical wound repair, the inevitable hospital stay of indeterminate length. I didn't ask for it, I didn't have to ask.

Of course I hope that Charles has a really wonderful birthday, but that's just the tip of it. I want him to keep having a wonderful life. I look for him to find a new great passion with a smart, compassionate man, I hope he is finally paid as much as he's worth, I want him to have the very best shoes I can help him buy, and experience the joys of everything he deserves, all of the vast trove of it.

In general, caregivers are pushed into the background, which is unfortunate, but the drama is often easier to focus upon, and I've been supplying that in spades. For the record: I would not be here today without the unquestioning, freely given support of my caregiver, chauffeur, shoulder, rock of normalcy. Happy birthday is a bit less than what he deserves:  Happy Life, Charles