My left arm is a joke. Not the kind of joke that makes me laugh. But a joke in that every time I look at it, I shake my head in disgust. It still works as an arm does. But I'll describe it's current condition in a moment.
It became nearly unusable for medical stuff like blood draws and blood pressure, a ways back. When I diagnosed and we were struggling to find a treatment that worked and my creatinin was over 8, we'd check in with my nephrologist almost as often as my cancer doctors. Doc Zoller (no longer my kidney dr) refused to take out an external catheter in my neck unless I got a fistula in my wrist. She wanted it there in case I needed dialysis. My numbers indicated my kidneys were failing. But I had none of the symptoms of kidney failure. I wanted the catheter out and didn't know it at the time, but the doctor was basically resorting to Medical Blackmail. I was still working and had to tuck the catheter under my shirt collar. to avoid looks and questions. For months I could only take baths, a shower would potentially get into it, leading to a possible infection. At the time, I didn't know that I could advocate for myself and push back against doctor's advise. She wasn't giving advice though. In fact she even scheduled me for a 4 AM dialysis without consulting me. Leslie and I talked and ruled out dialysis. For me it was more a mental thing. I knew I couldn't handle an additional medical procedure at the time. Anyhow, the fistula went in. Never been used. And now 11 years later, if for some reason I had to do dialysis, it doesn't even work. I'd have to get a new one. And I can't even do party tricks anymore by shocking people with the powerful pulse. All I have is a scar and a small raised area in my wrist. Furthermore, I do have a fuzzy line in the sand, where I have told myself I'll never do dialysis, even if my kidneys do fail. It's a bridge too far for me.
That's not why my left arm is a joke though. It's a joke because it looks like shit. First problem is that I'm sporting a huge bruise on it. Leslie and I had a yard sale and garage cleaning extravaganza last weekend. It was a success and we got rid of a lot of stuff. Because of all the steroids (Dexamethasone) I've taken since 2011 and a daily baby aspirin, my skin is super thin. I bleed and bruise on a regular basis. A slight bump or scratch will leave an ugly mark and bleeding. After the garage cleanup, I noticed a bruise on my left arm. I have no idea how it got there and it seemed to be expanding in front of my eyes. I should have set up a time lapse camera to watch it grow. When I woke up Monday, it looked like this:
It's Friday now, and the bruise is slowly shrinking. But it's still there and I'm still wearing long sleeve t-shirts, again to avoid questions and looks. Meanwhile I noticed a new small growth on my left forearm. I've spent more than enough time at the dermatologist and have had my share of skin cancers removed (again, due to Dex). I have an appointment with my dermo doc in a week and I know it will need to be biopsied and I am almost certain it's a squamous cell carcinoma. My dermo dr is the best and she always feels horrible when she has to cut into me. A side note, her husband is now my back doctor and sent me to physical therapy. He's ruled out surgery given my bone density needs to be tested and I have Dex cause osteopenia. Surgery would like make things worse. (Notice a pattern with Dex? It's evil) The new growth looks like this:
The good news is NFL training camps opened. I'm predicting Vikings vs Bills in the Super Bowl. Mark it down. I'll likely do a super quick stop at a casino at the Nevada stateline to place my annual bet on the Vikings to win the Super Bowl. 40-1 longshots. Reminder, 26 years of making this bet. It's never paid off. And don't get me started on how frustrating it is that I can't make a visit to Vegas due to covid and my crap immune system.
After searching high and low, I finally found a therapist who meets my need. I've had 11 years of being mentally strong and kicking ass but I've recently hit an emotional wall. I was turned on to a place called: Fran's Place/Center for Cancer Counseling. It's awesome. Check em out if you're in California and need support. I've added a link on their name.
I've started PT and my back is improving. No long walks though. That's sad and might be adding to my depression, anxiety and stress. I'm not a real pleasure to be around.
But I'm back to losing weight. I am just under 190. I should be 170-175. I have 60-89 year old man muscles now. Meaning, they are flabby and shrinking. I gotta lean up. Minimizing carbs. Minimizing beer. Minimizing calories. I'm focused. Lean and mean coming up.
What else? Days fly by. Typically I have one or two medical appointments every week. I take a lot of naps. Typically I wake up more tired after my naps. My current nephrologist, Dr Froch at Cedars Sinai, ordered a home sleep study for me. We'll review the results in a few weeks. Doc Froch also ordered Evusheld for me, to get me some protection against covid, given four doses of the vaccine gave me no immunity. My immune system is a nonexistent. Like so many people, I'm sick of covid, but we're still masking up and being careful. Dr Froch is awesome. Here's a short video of how the home sleep test works:
I'm almost ready for a pet. I don't know if it'll a dog though. I still grieve and feel guilty about Gracie. Leslie isn't pet ready yet and I get it. So maybe start small, like a bunny. Or start big and get a horse. We had a morning dove build a nest in a hanging pot outside our kitchen window recently, It was there for 4 days and I felt real ownership and pride. Sadly it flew away and left no eggs. I do worry that a crow got the eggs, when the parent doves were on a shift change. Crows are darn smart, you know.
And this is all I got. Cruise control myeloma-wise. I switched to FasPro. It's Darzalex given via a 3-5 minute sub q injection instead of a 4 hour infusion. I had my every 4 week injection today. We've also lowered my Dex, to try and minimize the crash. Also in my mix is 1 mg Pomalyst, every day for 21 days, followed by a 7 day break. I also get monthly Xgeva shots to try and strengthen my bones, without damaging my kidneys.
Hope you all are well.
Hold on, hold on! We may be getting a new law that allows Medicare to negotiate drugs prices and caps a patient's out of pocket Medicare costs at $2,000. This would be huge if it happens. Contact your congressional rep and let them know how important it is. My monthly co-pay on Pomalyst exceeds $1,000. This is with a good Medicare Part D Prescription Plan. Absurd. And don't let anyone tell you that Pharma can't research or provide new drugs if this becomes law. That is horseshit. Below are two links: An article on the proposed bill and a way to find your representative. Peace, love, health and happiness.
Lastly (for real), a few years back I started getting rid of stuff, ala The Gentle Art of Swedish Death Cleaning. I realized during our yard sale, that I might have prematurely gotten rid of some things that I should have kept. It's mainly Vikings memorabilia, so it's all probably replaceable. It made sense at the time when I was certain that living ten years with myeloma was an impossibility. But now I want things for my future man cave which is on my theoretical vision board. Also on the vision board is owning a purple car. As a kid I wanted a purple Plymouth Barracuda.
sorry to hear about more health issues. psyched for COWBOYS training camp while struggling with MM issues as well.ReplyDelete