Feeling well while dying

Supposedly, I am dying. But right now I feel more alive than I have in years.

Six hours of surgery on November 29 removed a brain tumor. My minor balancing issue that sent me to a hospital and into surgery is gone. I’ve gotten physical therapy I’m not sure I needed but certainly didn’t hurt. I’ve even started driving again. My wife is still worried I’ll do something dumb and if I lift eleven pounds instead of 10 I might have a seizure. Ten pounds is supposed to be my limit for the first four weeks, but I suspect the guidance is one size fits all but it really doesn’t fit me. Her concern comes from a place of love but I also feel I know my own body.

But maybe I don’t know my own mind. She remembers lots of stuff about my hospitalization that I don’t. I thought I was operated on within 24 hours of tumor detection. It was 48 hours. I remember being in the operating room a couple of hours. It was six hours. I tried to resume my consulting when I was back home, but found that complex tasks were beyond me. My mind would wander and I simply couldn’t concentrate. So to the extent I did work for clients, it tended to be simple and repetitious work, such as software upgrades. It’s only in the last week or so that my mental facilities seem to have come back to normal.

My wife was a little worried when she let me try a short drive to the doctor. Driving is easy, provided you can move your arms, fingers and press a pedal. Walking is no problem for me, and I’ve walked more than three miles the other day. But walking involves more effort than driving plus hand/eye/muscle coordination. The main concern about driving is that I might have a sudden seizure. I never had a seizure, but might have, which was why I was on anti-seizure medicine following my surgery.

People are being very nice to me. In our tight 55+ community, the word is out about my condition, although the details are rather general. A retired physician came by to chat and he talked about palliative care. Two guys up the hill took me out for breakfast to get me out of the house. We’re getting holiday cards and sympathy cards, an occasional meal dropped off, and today some Christmas cookies arrived. All this while I feel great.

But of course there’s an underlying angst. There’s upcoming radiation that starts on Tuesday. There are chemotherapy drugs that need to be purchased from a specialized pharmacy. These drugs seem to be a ripoff. They are charging me $300 a prescription. To get up to the 165mg I need, they sent three bottles of 44 pills each, one 140mg, one 20 mg and one 5 mg. I guess there’s no 165mg available, but my health insurance plan treats them as separate prescriptions. So that’s $300 times three, or $900 for what looks like a standard cancer drug that should be available at the local pharmacy. I feel I’m being ripped off, but doubtless the drug would cost much more if I had to pay the full price.

There are certainly times at night when I feel a creeping angst and anxiety. I know what the doctor said is true and this cancer should eventually kill me. But most of the time, since I’m feeling fine, it just feels surreal. I can sort of tune it out.

How to spend my time though is hard to figure out. In the short term, there’s six weeks of radiation in my future. We’re planning an Alaska cruise, likely in May, with some friends. We’re also talking about a cruise later in the year closer to home around New England and Canada. Maybe they will come off, or maybe my disease will progress quickly and we’ll have to cancel.

I have to think about a whole lot of stuff I don’t want to think about. My recent post on what to do with my body after I die is no longer theoretical. Intellectually, cremation seems logical yet I recoil at the idea. My latest thought is to donate my organs, since most should be fine and readily transplanted. So some part of me could survive death, just not my brain.

There’s also thinking about how I want to die, but a lot depends on what fails first and in what order. Some things are terrifying to think about. Suppose I lose the ability to hear or to talk due to the cancer? My will probably needs updating. I have to transition the money management to my wife in a way that she can manage. The list seems endless but for the most part we haven’t looked for the help we’ll need and have only talked around the edges of these problems.

I’m also aware that all of this is stressing out my wife. The same would be true of me if she were dying of a brain cancer. Some of this may be my fault. For much of our marriage I’ve tried to insulate her from these stresses to the extent I can, because her life has and is rife with mental illness. She’s putting up a brave front, but I can tell she is stressed and hurting. But there’s only so much I can do or say to help.

And at the same time I am so fortunate. We’re retired, we’re comfortable, we have plenty of money and good insurance. I’ve still got my wits, my brain, my body and since I’m driving again, mobility. Death is likely coming far sooner than I would want, but much of my decline and the inevitable suffering can be mitigated. But perhaps I can stay symptom free for a few years.

It’s Christmas Eve. Our daughter arrives for a visit tonight and will stay a few days. Unable to go anywhere, I’ve been buying presents online. But I’ve procrastinated. Due to the fuzziness in my brain, summoning the will to look and buy things online has been a challenge in itself. It will be a low key Christmas. I’m just hoping I get to enjoy another one.

At least it will be a White Christmas. The massive Siberian air mass putting the country into a deep freeze arrived yesterday, but there was enough rain that turned to snow to mostly cover the grass and make driving chancy. But it will still feel different, simply because I am different and my life has been rearranged to be shorter without my will or consent. So trying to enjoy life as best I can seems logical, though not always possible to sustain.

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