This is late night stream of consciousness, so if it’s a bit discombobulated, that’s why. My apologies.
It’s been awhile for an update. If you’re reading this I’ll assume you know the drill about our current and future financial needs. But thought to keep you updated as to my current status.
This may sound a bit out there, but when I was young, 5-6 our so, I had a vision of what my life would be like. Not in specific details, but in several major cycles. Teaching, Married, Kids, Being involved in Creative startups. (Just one of which could have been fortunate in a life) Natural History. I’m sure we all have at some point inklings of what our lives will be like so nothing really new in this. What always stuck me was the age, 5-6yrs old). These aren’t wishes our desires etc. They were the path, our at least the concrete steps along the way. I saw these cycles and the clarity with which they appeared and then kept reappearing and became true. For the most part, they’ve been successful.
Working through all this Cancer stuff, I’ve realized all those visions stopped, literally, at 50. I’ve done things of course but if predetermination exists, for me, at least in the knowing of such a thing, pre50 was laid out, post50, tabula rasa. Half a life left and no clear path. By design as well? It’s the blankness part of it all? Who knows!
Then Cancer comes along. To fill vacancy? Give me cause? (No one ever said ones way is always positive). Perusing through all this, (one thing Cancer gives is plenty of think time), I have found one thing I have always loved but had to put on hold through this. Photography.
Without being fatalistic and having been up down and all-around about how to deal with this chronic disease and the multitudinous and constantly changing side effects, which in reality has been far more loss than I would have ever expected, for sanity sake, I need to find a creative outlet if I am going to keep on keeping on. Finally after all this time it’s photography. For many other reasons which I’ll leave to another time.
Photography. It’s the one outlet I’ve always loved and was starting to make a run for when I came down with MM. If I didn’t see where I could go with it, it would be a loss. And having reason keeps me centered.
That’s the update. Not specifically about money. But this is what I am going with.
Those of us elders may recall thalidomide. It was prescribed for morning sickness in late 50s or so. It was discontinued, today perhaps blackboxed because it caused severe, grotesque birth defects.
Similar to most chemo drugs, the derivatives of thalidomode – Revlimid, Polymist, Lenalidomide – are quite toxic. However over the years researchers found there were also anti-cancer qualities to thalidomide. When researchers manipulated the molecules to lessen the toxicity, it became one more choice in the arsenal against Cancer. I believe most MM’rs take or have taken one of these drugs over the course of their treatments.
Other Chemo meds are also very toxic by design. Cancer is a nasty mutation. Among it’s many qualities is survivability. It spits off cells that can hide for years until they metastisize from an unsuspected hiding place. Leukemia can cross the brain/body barrier and sneak into the folds and crevices of ones brain only to reappear in the end game. So it seems best practice is to hammer, pound, cut, chase, burn, do whatever to stop Cancer at first sight. Hence, why the LTS (Long Term Survival rates) are moving up albeit all too slowly for those of us with MM. And also why Cancer patients suffer the way we do.
In a macabre way, the MM demographics fall on folks around 65’ish, after a good part of life has been lived. On the other hand, if you’re like me, thoughts of not seeing Grandkids grow up are the most painful of all. Waterfalls of tears have been shed, still, when I think of this. I make no excuses for MM here. Cancer sucks at any time.
I mention all this because I hope patients ask for, and receive, all the Clarity they can from their oncologists about their therapy. It’s vital patients advocate for themselves. No changes may be made, but without clarity, any changes one might have available can’t be discussed.
It’s your life, not their’s.
Support. When I started this MM series of posts, I did have some goal(s) in mind. I thought, after perusing forums, boards, other Cancer sites I had experiences after 4 yrs of MM others might find useful.
Therapeutic. I have found myself fighting this MM funk and had yet to find a way through it. Each and every step required a reserve of energy, which, other than the doing of a thing, had nothing to do with the thing itself.
Information. I found, what I thought, too many posts & responses to be of a shallow character, not really, to my mind, either answering the question, or answering in a way that would give useful info. ( I am much aware of why this is so) There is so much info about MM available, as well as a lot of BS, I think it important to offer solid info and give others the chance to use as they can.
HOPE. Many inquiries come from folks after initial diagnosis. Surprise!!! You have Cancer!!! I believe a primary need at this point is to offer HOPE. And there is much HOPE for living with MM. All the info, protocols, etc mean squat without HOPE. The MM is manageable. The Garden of HOPE has to be sown and cultivated.
The chronological order I had tried to impose on my MM experiences very quickly fell apart. Memory is an elusive and tricky adversary. I may start with a specific memory but inevitably I am led through the Neuronal Maze (hence Neuronal Catastrophe) of MM memories, ending far afield from where I thought I would be. I knew this was a game I had little chance, or desire, of playing. I apologize for the randomness of my posts for the 1 or 2 who pay attention. What is written here is the complete truth, at least to the extent mind reveals it as I write.
Shared Pain Lessened
Shared Joy Increased
A beautiful song if one can ever lay claim to that title. If you know this song, then you know what folks are talking about and why.
Finding out Gregg helped write it adds more than a touch of mystery and magic to it.
We could all learn something from this. Esp in our get it all done now world.
As I struggle to regain parts of me that have been disappeared over the last years, I’m finding I have to relearn skills I either forgot or have been shrouded in chemo brain. Here’s the results of that.