Monday, August 12, 2019

I am Stretching (I Should Have Stretched Part 2)

Irony: a state of affairs or an event that seems deliberately contrary to what one expects.

Coincidence: a remarkable concurrence of events or circumstances without apparent causal connection

My very first post on May 11, 2011 was titled I Should Have Stretched. This was written 9 days after I was diagnosed with Multiple Myeloma and with zero idea of what lay ahead.

About two weeks ago, I got out of bed and felt a horrible pain in my lower back that shot down my left leg. I attempted to walk Gracie as I do and barely made it down the street. For myeloma patients, the fear is that our bones are damaged by the disease. For me, I was severely kidney impacted but my bones were fine at the time of diagnosis. The kidneys are much improved and my bones continue to be ok, except for the osteoporosis resulting from 8 plus years of steroids. Not to mention my ever decreasing eye sight, thin skin, muscle loss, etc, etc all from those damn piece of shit steroids.

In April 2011, I went to Las Vegas for a friend's birthday. I was reluctant to go given I'd been severely fatigued for the previous 2 or 3 months, with nightly fevers and sweats. I lasted 3 hours in Vegas before I started shivering and burning up, like never before. I went straight to my hotel room, crawled into bed and lay there thinking I was going to die in Las Vegas right then and there. The next day I flew home, Two days later I was in the hospital for severe (there's that word again) anemia. 7 days later I was diagnosed with myeloma.  8 years later, I've been doing treatment continuously. 5 different lines of treatment to date.

For the past week, I've been doing physical therapy on my back, which only today is showing signs of improving. If I am vertical for too long the pain continues to radiate down my leg. Physical therapy involves stretching and lots of it. The irony/coincidence is that I didn't follow up that May 11 2011 post by suddenly embracing stretching. For the past 8 years, I've had to work harder then ever, and have been more frustrated than ever by the lack of progress, worse yet regression, in trying to maintain my physical condition. But I never added stretching to my routine.

Two months ago I returned to the scene of the crime, Las Vegas.  I've been feeling great on my latest treatment (darzalex for 2 and half years) and I deserved a break and a trip to one of my favorite places and basically a return to somewhere I hadn't been to since being diagnosed. I've been on cruise control for a while, so I need to take advantage of it.

Ironically/coincidentally I've been off of cruise control since this latest Vegas trip. First, Dr Phan scared the bejesus out of me, indicating that things may be changing and that we ought to talk about the next drug. It's not like him to be alarmist, so I considered his words carefully. I have been extra tired lately and a relapse would explain that. My labs last month showed things back to normal, so we've crawled off the ledge of worrying. I did labs today and we'll see what those results show. Likely Darzalex is still working.

Second, a few weeks ago, I developed a huge bump and massive bruise and tenderness on my right elbow. Out of the blue. Phan sent me to an orthopedist who had me do an mri. The mri showed tendinitis but no bone damage and no lesions. The elbow is much better. What happened will remain a mystery.

In a follow up visit to the ortho for my elbow, I asked him about my back (#3). X rays show I have degenerative disc disease in the lower back and it's pressing on a nerve, causing the leg pain. It's probably simply age catching up to me on this one.  So, I'm doing 6 weeks of physical therapy and stretching and icing and heat and we'll reconvene in about a month from now. If the back hasn't improved by then, we'll do an mri on the back. Mind you, I am severely claustrophobic, but I've learned that a couple of Ativan and a sleep mask can get me through the frightening exam.

The problem with the back is that it has grounded me for two weeks now. No exercise, very few excursions, no long walks, no bike riding, no life. This down time really impacts my mental state. The idle time gives me an unwelcome chance to ponder how much cancer has changed my life. 8 fucking years. Relationships, friendships, finances, optimism, goals, body insecurities have all increased or changed or taken a hit or decreased and so on. In many ways cancer has made me a better person, with new goals, new ideals, new friends, a new appreciation of life and people, and so on. In other ways, I long for the old Matt and don't even recognize myself anymore. Old goals, old plans, old quality of life are out the window. Ideally I'd combine the old and the new and I'd have the best version of me. Regrets run rampant.

I worked for the first six years of my myeloma journey and looking back I have no idea how I did it. It's a blur. I was barely hanging on and barely able to put a thought together other than go to work, go to the doctor and go to sleep. Crap, that's what that was.

The first 6 months post diagnosis, I was in and out of the hospital a lot. We had a lot of challenges finding a treatment that would get some control over the disease. Hospital stays were absolutely horrible for my mental state. These latest two weeks of limited activity due to the back are in no way comparable to hospital stays. But it is giving me a chance to think and perhaps think too much.

As I anticipated back on May 11, 2011, it's been quite a ride. We'll see where it goes from here.

1 comment:

  1. It really is amazing what we all endured and edure with this nutso MM! We have so many similarities Matt... one day we will meet up! Hope your back and elbow situation gets better! Seriously nuts to think about being in treatment for the amount of years we have been. No one but MM people get it!! 8 years for you, coming up on 10 for me. Mind blowing. Continual treatment. It's a wonder we are still as functional as we are :))))) Julie


Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.