Perspective (Part 2)
Editor’s note: Blood-Cancer.com recently talked to a community member battling blood cancer named Glenn, who shared his experience with multiple myeloma. This is Glenn’s story, in his own words.
My wife and I leave and stand in the hallway outside the office, embracing and weeping. NOW what? I’ve already survived prostate cancer and a scary run-in with melanoma. Three cancers, one lifetime? Isn’t there some rule somewhere that two cancers per person are the max allowable? No? Why NOT? On the bright side, it’s a damn good thing we didn’t ignore all this and end up in Florida, in pain, and still not knowing what was happening.
Keeping the disease in check
We proceed to make an appointment at the nearest university cancer center, where—after blood work and a bone biopsy, it is determined that I have multiple myeloma, that they can’t cure it but that they can probably keep me alive for five to seven years—oh, and that treatment should start immediately. A week later I begin injections of a chemo-related drug, high dose steroids, and a thalidomide-related drug three weeks on and then a “rest week” (ha-ha!) to give my system a breather. Not that it’s a tough drug or anything, but those old enough to remember the thalidomide birth defects disaster from the 1960s will understand my trepidation. I also begin monthly infusions of “bone juice,” as I call it. MM had made my bones look like swiss cheese, and this drug helps deal with that to some extent.
All of those drugs comprise “front line” treatment for MM, known to be successful at keeping the disease in check. What choice do I have?
A promise to keep
Not too long thereafter, I have the profound displeasure of having to explain all this to our children. You wanna talk about some serious weeping?
Since then, my 2nd opinion doc, one of the “big-guns” MM specialists, says he’ll get me to 80. It’s not the 100 years I promised my kids awhile back, but it’s better than five to seven, so I’ll take it. Research is making huge leaps forward with MM, so we devote all of our charity donations from Amazon purchases and eBay sales to the International Myeloma Foundation, and that’s likely where some of our tax refund checks will go, as well. We can survive without the money; I’ll try to survive while the scientists figure out this disease.
Which sorta brings us back to where we started.
I've had a good life
These days, friends see me and say “You look so g-o-o-o-d! Compared to what? I wonder. You mean compared to when I was younger? Compared to when I wasn’t racked with MM? Or compared to what you thought a cancer patient would probably look like? They mean well, and I love them for their concern, their love. And frankly, I’m glad they think I look good! It would really be a bun-toaster if they said, “Man, you look terrible. You look like you have one foot under the dirt already.” Yeah, that would suck. So, keep it coming! Keep telling me how great I look. In an odd way, it helps.
They ask me how I’m doing. Well, this ain’t no picnic! Most days I have a healthy dose of brain fog and exhaustion, but at the cancer center I see a lot of different people in different stages of one cancer or another, and it humbles me. And what really nails me is seeing kids—shaved heads, dark rings under their eyes, all they’ve known so far in life is chemo and hospital beds—and there they are, bringing a toy to another sick kid just because they know it’ll make them smile, or drawing a picture of sunshine and flowers for their emotionally drained nurse.
And I’m like, Are they that pure of heart, or do they just not have enough life experience to know what they’re gonna miss? How can they be so damned…accepting? And then I know that I don’t really have it so bad after all. I’ve had a good life, I have an amazing partner whom I adore, kids I’m proud of and love beyond measure, and I’m still vertical. So I’m tired and I’m foggy, so what? I’m still here! What’s to complain about?
Well…I did pee the bed. Sheesh!
Read Part 1 of Perspective.
Do you experience brain fog?