So It's Not an Excursion

I'm now really wrapping my brain around the whole idea of what exactly it is that I'm doing here.

My view of Chemoworld has been the same as most people's, and my understanding of it has been as limited as anyone's. I have been thinking that the doctors take the chemo and blast me with it, to get the cancer to back off. Once that is successfully done, I get regular CT scans to see what the cancer is doing (if anything) and, if it starts acting up, I get blasted again. I was imaging a life where I get incredibly sick, then build back my strength, then eventually get sick again, then build back again. 

But what I now realize is that the treatment of my cancer is not going to be a traditional treatment, to try and eradicate the cancer. I knew this from the start, but I didn't really understand what it meant, I guess. So I have a new way of thinking about my cancer: it isn't a traditional cancer diagnosis, it's more like HIV.

Think about it. Nowadays, a person who has HIV does not get treatment to eradicate the HIV from their system - it's still basically impossible to do. Instead, the antiretrovirals and protease inhibitors and all the other pieces that go into treating HIV are used to keep the HIV at bay. Most people with HIV (who have access to quality health care, the money to be able to pay co-payments, etc) live with the virus. They get their blood tested a couple times a year, and assuming the levels of HIV are still undetectable, they go on. 

One friend told me that the worst part of having had cancer is that she still thought of herself as a "person with cancer". Even though there is no active cancer in her body, she has to go in and get tested to make sure everything is okay. She doesn't like thinking of herself as a person with cancer. 

But I am always going to be a person with cancer. My cancer is not going away, so the idea is to use the drugs wisely to keep the cancer from running amok and to give me a good quality of life.

I can cope with this. I have a lot that is left to do. I still have the Kenney Cottage disassembled in a trailer, and I need to find a way to buy some land to put it on. The Pinole house is getting ready to move. I have a big family wedding coming up. And grandchildren - I'll be 64 next January, and although I am behind the song (I don't think Sabastian and Jamie will produce three grandchildren by the end of January), I expect to soon have Irving, Blanche and Stella on my knee. 

Me at the Kenney Cottage, 2014

 So I have access to the medical insurance, I have strong motivation to stick around, I have an amazing oncologist, I have huge amounts of support. Yes, I am writing this at 2:30 AM, but the terror seems to be fading. What I am finding is a good road map for living my new reality. 

This feels like I am preparing to move another house. I am not coming home from Chemoworld, but I will keep a place here. I'll travel back and forth - the guy with cancer, the gay house mover, the historic house restorer. I can see how I can continue working at CforAT, build back strength to rewire another Frigidaire Flair, and continue writing letters and bread and butter notes. 

I'm also coming up with some new ideas. For example: if we do buy land in Bodega, and can move and restore a couple houses there, why not use some of the space to assist other people who are dealing with cancer? I love the idea of being able to provide a place where people can come and be comfortable but also be in a beautiful rural setting, helping heal more than just their cancer. I'm going to start trying to figure out how we might pull this off so we could offer people a space at no charge, where they can come and spend time recharging themselves. Maybe I can build a bridge between Chemoworld and the world of the cancer-free. 

Anyway, lots and lots to think about. And that is what I love, having lots of plans and schemes.  

So again I say: stay tuned. I knew this trip would go in all kinds of directions. Stick with me to see where we go.