First post in ages.
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.
In looking thru other fundraising posts and sites I noticed the most successful requests seem to be either about children or show people in distressing states of damage. We see children way too young to be dealing with Cancer: bald heads, IV poles following the everywhere, courageous smiles, parents tears, tubes seeming to come out of any orifice available, and all filled with Hope current med technology will pull them from the despicable hold of Cancer they fight day in and day out.
I’m a 62 yr, old male with Cancer, diagnosed in 2015, out of the blue as happens so often. Multiple Myeloma, a currently incurable Cancer, though very manageable if caught in time. We have a fundraising page on GoFundMe to help with the incredible expense Cancer carries. Including inability to work; trying to survive on SS disability; praying health or financial disasters stay at bay.
If you see me, there’s a good chance you wouldn’t realize I had MM. In my case what I have is serious, but almost wholly internal. The only external clue is the infusion port in my upper right chest, covered by my clothes. This is only a small sign for others unless I explain to them my MM.
For example: my right shoulder blade has been split by the more than 100 lesions which have infiltrated and eaten my bones as MM is a blood disease residing in the marrow in order to wreak the havoc from it’s out of control Darwinian mutation.
From my Bone Marrow transplant and the chemo used I have heart damage. I am left with app 65% of my former heart function. I’ve been told it’s gone. Kaput forever. Coming from someone who’s life has always been active, I am no longer able to summon the strength and ability once available to me. Frustration as well as hidden from view.
Chemo has also left me with neuropathy. Nerve damage irreversible. So I can walk ( with a cane ) but biking, hiking, athletics are no longer part of life. Neuropathy has also reduced, really stopped, my guitar playing. Fingers are not only weak but have a mind of their own.
Chemo has also depleted the energy I used to propel me thru athletics, marriage, raising kids, working my ass off to support those who depended on me.
There’s other unseen issues only I am aware of regularly. Chronic pain haunts me in every endeavor I undertake. The energy required to fight this in order to do anything can be immense.
The primary effect of all this is my hope for a retirement with energy to play with grandkids has been reduced greatly. All else pales when I ponder this.
I think that’s enough and hope I was able to make the point that not all diseases or stages of disease are immediately obvious.
If you can please consider donating to our cause, Incrementalism does work, and reduces donaters pain while ensuring we can share what we have with others.
Shared Pain is Lessened. Shared Joy is Increased.
Thank you from Sam & Deborah.
another interesting attempt to figure out Cancer.
I try and walk several times a week. I have my walk walks, and I have my foto walks. Foto walks mean I am on my hands and knees, belly, whatever it takes to get a foto. The last 2 foto walks I have barely been able to walk home. My legs are rubber, no strength. I look like a drunk. I think the Neuropathy caused by chemo has finally caught up with me though I need to do a few tests. How do I feel? Shit cause fotos were the final part of what I was hoping could bring back the creative life I had before MM.
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.