Happy 3rd Cancerversary

It was three years ago yesterday that I was first diagnosed with cancer. Odd to think back on that time and how difference my life was then.

I had just signed the Rhodes College contract and was excited to get there and start working. It felt like real chance and I went there with the idea that I’d never leave. I embraced Memphis and Rhodes with the long term, deeply invested engagement of the seriously committed.

I had to wait awhile when I first got there for my insurance to kick in. Knowing I had cancer, that it wasn’t being treated, and that I was waiting for insurance to kick in so that I wouldn’t bankrupt myself or my mother, was a secret I held from my employer. I asked anonymous questions in new faculty sessions about chronic illness and personal spending account maximums.

Three years later I’m still on the delicate precipice of insurance. Just today I had to redo my Healthcare.gov process due to a sudden change in my monthly premium. It turned out that the change was due to my own failure to upload my latest W-2 from the work I did last year. Based on that, my premium will actually go down for the rest of the year.

Unless I can make some money this fall, I won’t be eligible to keep the marketplace plan next year, even if I have savings to pay the premium. Basically, by the end of the year, I’ll be forced onto the state medicaid analog.

What’s crazy is how every small change in my insurance is terrifying. There are so many storied about people being bankrupted by surprise expenses. Every time I use the insurance, I’m worried that I’ll miss something and get charged thousands. Every time there is a change to my plan, I worry that the details will have changed and I’ll get stuck with some unknown charge.

Today I wept on the phone with the healthcare.gov customer service rep as she walked me through the process.

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Daily harvest

Deep reds from two plants. One of cherry tomatoes and the other for a small, dry adapted variety. More tomatoes for the fall I think.

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Is My Life A Comedy or Tragedy?

Someone recently told me that things always get better. This is not my experience, I think. Could I be wrong?

I asked her if she really believed it. She didn’t want to answer. Are things really better today than yesterday? How would we know? Is my life better now than before I had cancer? I don’t think so.

Maybe it’s more a philosophy than a statement of truth. A belief system. Everything always gets better, even when bad things happen. Even when things might seem worse.

I don’t know. My life seems tangibly worse. In the areas of my major life goals, I have failed. I never found a lasting love or partnership. I never found a family to join or build. I never made it in my career of choice. Cancer effectively ended my quests for these things.

I had thought my life was like a romantic comedy. Lots of hilarious and harrowing failures punctuated by new hopes, new dreams, new loves. When I got cancer, I realized I was in a tragedy. Good intentions, willingness and effort are no match for the critical character flaw which undermines every ambition.

Cancer wasn’t the flaw. It was just the symbol or physical manifestation of the flaw. The flaw is in me. Is me. Something about me that I can’t escape.

Cancer just made that story make sense. I wasn’t half way through a perplexing romcom, but near the end of an unexpected tragedy.

I don’t know the future. I don’t actually know the story of my life. In other people’s lives I admire how their failures lead to unexpected successes. I’m open to that happening for me.

Maybe I’ll find some kind of love and family, in an unexpected form that is better even than what I’d dreamed of. Perhaps I’ll find my way into a new career that turns out to be more fulfilling and successful than my former jobs. That sounds lovely.

I just don’t see it. And that’s what would make it a miracle.

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Bone Spot

Somewhere in here is evidence of a problem. I can’t see it, but the radiation oncologist can. It’s a spot on my sacrum. They don’t know if this is a new spot or an old one that was occluded on my scan from three years ago. The only explanation for the spot is that the prostate cancer is eating it.

If I had never been irradiated before, they would treat it immediately. But since I’ve already received a lifetime of radiation, they are going to wait. In three months or so we will scan again and see if it has gotten worse. Then we will know.

In the meantime, if I feel bone pain, that’s a bad sign. I’m not sure what bone pain feels like, but everyone tells me that I’ll know it when I have it. Fair enough.

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Not A Father

Oh Father’s Day. The pervasive emptiness of my life is coming into focus on the day that fathers are celebrated. I don’t celebrate Father’s Day and never have. It was just another day for dad to disappear or show up late. Even as I wanted to be closer with him, I didn’t trust him. I was critical of his distance, but afraid to get close. Looking back I can imagine that would have been infuriating or hurtful for him. But I don’t know if he actually felt that way, since we never discussed it.

My last involved conversation with my dad came like 15 years ago. We met for lunch and mostly talked about his boat. It was an amend, as the previous year we had discussed his drinking and it didn’t end well. This time, I kept it to topics that he liked. The conversation went fine, but it was utterly banal. Nothing I wanted to do again.

He died in 2017 at home by himself on the toilet. I might think that would be funny but it’s probably how I’ll end up too.

When I got cancer I worried that it would make my life feel meaningless, and it has. It has crushed my desire and my functioning, which makes intimate relationships harder. But it’s not like relationships fix anything. I have so many friends who still struggle with their partners. I envy their intimacy sometimes, or that people are still attracted to one another, because these things no longer exist for me. But I don’t envy their pain, disappointment or betrayal. My dad had kids, but his life was also miserable and despairing, so it’s not like kids fix anything either.

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Weeping Returns

I had a pretty dry couple of weeks, but the weeping has returned. I didn’t lose it in the doctor’s office last week, but since then I’ve been weepier. I got the lupron shot seven days ago, and since have been submerged in the emocean.

The thoughts that bring it on are related to my upcoming doctor’s visits. The new spot on my bone scan evidently cannot be ignored. Even though I don’t have bone pain, the oncologist doesn’t think we should ignore it. Probably smart. I meet with the radiation oncologist to go over it next week.

The last time I got a bone scan and they found a spot, I didn’t realize how painful and deadly bone cancer is. My bone biopsy turned out to be negative last time, and it did it all alone in Memphis not even knowing that my death sentence was hanging in the balance. This time I suppose it feels inevitable that the cancer goes to the bone. Maybe not yet, though.

All my aches and pains are supposedly addressable by a rheumatologist. They are sending me to a neurologist first, not sure why. In the meantime, I’m achy every day. I do some stretching and basically choose to do only one or two things per day. Now that it’s 100 degrees all afternoon, I’m gardening less and so have a bit more energy for other stuff.

Oh, right, the other times I weep — having to cancel plans with friends because I’m too tired. And thinking about old friends visiting and seeing how much I’ve deteriorated since they saw me last.

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The Garden is Melting

We had our first week of 100-plus degree weather here and it’s melting the garden. The temptation is to up the water supply and try to keep things alive. I’m trying to resist this. Instead I’m thinking to plant more dry adapted flowers and a few veggies that supposedly thrive in this heat. The dead things will become worm food.

Trumpnobyl

I just finished watching HBO's Chernobyl miniseries. Thanks to all the workers who sacrificed their lives to minimize damage to the environment. It seems there is a commonality among workers around the world -- a grim willingness to help others despite dire consequences.

The show ends with a devastating speech: “Every lie we tell incurs a debt to the truth. Sooner or later that debt is paid.” The USSR may have paid some of their debts with the dissolution of their society in the 1990's. When will we pay and what will it cost?

I admire the grim and depressing vision of 80’s USSR depicted in the show. It reminds me of what I loved about Tarkovsky’s Stalker — a mirror world of the USA, an shadow existence in which cherished ideals are perverted and have supernatural consequences.

The Trump presidency is a slow motion tragedy grounded in a daily avalanche of lies. #trumpnobyl

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Planting, Dying

It took a week of 100 degree heat to kill these flowers. I thought they were drought adapted. I dug deep holes, backfilled with compost and watered them well. But they burnt up before my next watering.

Empty Night

It’s a Friday night and everything feels empty. Why is that?

My rhythm has been disrupted a bit. I haven’t been up early and out in the backyard due to the heat. Even by 8am it’s hot in the sun outside.

Today I went for my quarterly Lupron shot. No weeping. I spoke with the the PA about my concerns regarding extreme fatigue and my openness to discussing medication.

We went over my blood test results. My PSAs are still very very low. Undetectable. But I’ve got a bunch of weird numbers on my blood test that are some concern. Low iron. Some other inflammatory signs. The PA doesn’t think these are side effects of the lupron. I’m being referred to a rheumatologist.

I also got the results of the recent bone and CT scans. “New mild focal uptake corresponding to new sclerosis in the right sacrum is suspicious for osteoblastic metastatic disease.” This is scary news. Bone cancer is bad bad bad. And it hurts, I hear. But I don’t have any bone pain. From what everyone says, bone pain is specific and distinct. If you don’t know if you have it, you don’t have it.

We decided to hold off on getting crazy about the bone lesion until I have some bone pain. The treatment would be a bunch of tests and possibly radiation, I think. The PA thinks we should chase down my soft tissue issues before we go the mental health via medication route. Sounds good to me.

I was so tired this afternoon after the appointments and going grocery shopping, that I slept in the hot room until like 6pm. I was still too tired to walk Old Man. Is that what makes the night feel so empty?

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Miscalculation, Self

I used to be an artist. Or I really wanted to be. Up until last year it’s what I spent most of my time on for the last 25 years. I cultivated my weirdness and perversity with vigor and discipline, thinking that uniqueness and specificity would serve me best. It feels like it all backfired. Somehow I never figured out how to make things that are broadly liked. Or broadly hated.

I thought this daily practice would be good for me. A kind of journal or diary for this empty time of my life. I suppose it has been good. It feels over. But maybe not. It’s just hard to see that the sum of my life is a bunch of yellow squash pictures.

I could make a zine from this content later. For sure. It would need that — a second layer of consideration and criticality.

I feel like I’m crossing over into something else. It’s no longer a strength that I continue to make things without support or success. It’s becoming a liability, pathetic, a sad prophecy. It’s how I felt when I learned that Boyce never stopped painting and kept all of his canvases. Ugh.

How did I never figure out how to make things that were more appealing? I guess I thought that I would be important, and included because I had to be, rather than because I was popular. Miscalculation, self.

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Cancer Scans

Back again for another round of scans. Same place as I was three years ago when I first got my cancer scans. CT Scan and a Bone Scan. Last time they found cancer. What will they find this time?

One of the features of my cancer experience is that I go to all of the appointments alone. I suppose it’s a feature of my life in general. I’ve done them all alone, the scans and tests and results and diagnoses.

The appointments seem innocuous. It’s just a test. Just a scan. No big deal. We just want to check. Lots of them are curious or inconclusive or weird. Another test is needed. Higher resolution imaging or a biopsy.

Then suddenly it’s fucking brutal. The news it shockingly bad. But you just walk out into the sun and go for sushi. Then your whole life gets ruined and you never really get better.

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Wild Color

Flower blooms are somehow mare satisfying to me than the fruits and vegetables.

Daily Harvest

Big harvest today. I wonder what caused the growth spurt. I’ve been watering in Friday’s and today is Sunday. Is that how it works?

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