Wednesday, August 20, 2014

The Taboo Topic

I'm not sure taboo is the right word. But what the heck, I'm using it anyways.  The topic is death.  I read a column on the Myeloma Beacon this morning from a fellow patient, April, and it really got me thinking. Generally the columns on the Beacon try to be uplifting and I've always found them motivating and inspiring.  One comment on April's column mentions that the Beacon columnists can be too positive and perhaps should discuss death and the reality of myeloma a bit more.  I disagree. 

I imagine all myeloma (cancer) patients in the back of their mind wonder how much time is left.  I know I do. But I also know it doesn't help me to dwell on it.  I'm fighting, I like living, and I'm going to go as long as possible.  When I was first diagnosed, I wanted to hear not a single negative story or anecdote. I went to a support group and it pissed the heck out of me.  All folks did was sit around and bitch.  Thanks for the lack of support, Debbie Downers. 

In the past month, two columnists from the Beacon have passed away.  In the past year or so, I've had people I know personally or through social media pass away from myeloma.  It's sad, sobering, shitty, scary and any other word that starts with 's'.  I'm approaching 40 months. I'm waiting for my latest lab results.  I hate waiting (for anything). I do my labs monthly. Lately I'm thinking I should do them every two months. What's the point of doing them monthly? Collecting my pee, going to the lab, blah, blah, blah.  All a pain.  I suppose viewing these things as a annoyance is a good thing. Viewing the myeloma as an annoyance is a good thing. It means I'm doing good and am able to view the myeloma as an inconvenience.  But in the back of my head, I wonder and think, this thing can come back with a vengeance at any time. Again, I don't obsess over it, but I know it's there.  And because of this, and as I approach my 53rd birthday, I really want to get my ducks in a row between now and my 54th birthday.  I need shit lined up and taken care of. I need my life running smoothly. I need a hobby or two and an accomplishment or two, so if I die and someone has to write a paragraph about me, they have something to say. Right now, my fear is that someone would sit down to write my obituary and they'd be scratching their head wondering  "who was Matt? What did he do?" Sure I have my annually increasing obsession, fascination and love of the Minnesota Vikings and all things Minnesota. I used to run a lot. I used to ride bikes a lot.  I used to go camping.  There are a lot of used to things.

My dad is in his 80s. He's been battling emphysema for some time. He doesn't get out much. He lives in North Carolina.  Last summer they made it up to New York for a wedding, that we also attended.  But that's it for the traveling. He sleeps a lot.  But whenever I talk to him, he's upbeat. He never complains. He's positive. Since the day I was diagnosed, he has been super supportive.

My mom is in her mid 70s. She's amazing. Her energy and passion are that of someone much younger. She traveled to Japan a couple of months ago. A trip to England is in her future. She still works.  It's pretty amazing. People on my mom's side of the family generally live long and healthy lives.

My boss is retiring tomorrow. He's 65. Still young. His wife is my age.  He has been my boss for 23 years. 13 at this job and 10 at a previous job. I guess at my previous job I did a decent job, given he hired me a second time. His rationale for retiring now is that he wants to enjoy life while he still can.  That is an excellent decision.

I kind of figure I might me working for a long time or until I kick it. I need money. I need insurance. My insurance is awesome. I'm lucky and haven't had anything denied in 39 months.  But that sucks.  I could get an infection or get sick at any time. That's the nature of myeloma.  But how crappy would that be?  Dying on the job.  Not enjoying life like I should be. I recently wrote about how I'm tired of obligations.  It's true.  Part of me wants to say fuck it, I'm all about me and nobody else. I think I should max out my credit cards. I should cash in my retirement accounts. I should travel. I should get a hobby. I should try new things. I think these things, because I'm don't want my obituary to say "Matt. He had a job" . Yes, I have Leslie and Gracie and family and friends and so on. But you know what I mean.....cancer forces us to look inward and to look at ourselves with a critical eye. It's a team battle, but also a very personal battle. 

Crazy stuff right?  I'm not obsessing over these thoughts. But they are on my mind lately.  On one hand it's freeing, I feel like I know what I'm going to die from. That makes it easy.  I just don't know when.  Robin Williams suicide hit me in a strange way.  I got really bothered when I'd read comments saying he took the selfish way out. Bullshit.  It was his life. And as with anyone, if they don't want to live, so be it. It's their choice. Suicide isn't a selfish act.  It's a freeing act.  Note....I'm not even close to being suicidal. I like living.  But I will say, when I was in the hospital for days on end, early on in my myeloma journey, I thought about how I could end my life.  Lying in bed 24/7, feeling like hell can make you think those thoughts.  But I haven't had a hospital stay in over two years....knock on wood.  But maybe I need a back up exit strategy.  Well, first I'll focus on getting my ducks in a row and finding a hobby and exploring life. One thing at a time.

The take away is that I have myeloma. I'll probably die from it. I just don't know when. Could be in a month. Could be in 25 years. 

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Berenson Oncology Success Rate

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