Wednesday, April 1, 2015


In one month and a day, I'll hit the 4 year mark since my diagnosis. I'm on my maintenance routine. I do chemo one day every other week. It's a short session...2 hours.  For about 4 days following chemo, I'm on the dreaded dex roller coaster. Sucks.  But the every other week that I'm not doing treatment, I feel great.  Energy is up (considering I'm always low on hemoglobin), I work out, I work, I started guitar lessons, I laugh a lot, I can stay awake past 8 pm (sometimes) and life is pretty normal.  I can handle this no problem.

 I do get twinges of guilt when I hear about friend's struggles and challenges with the disease. Doesn't really seem fair. I've been pretty fortunate. Mind you I know it can change at any time. But I'm doing everything I can to keep my immune system humming along, keeping the myeloma at bay.

Meanwhile, I've accepted what myeloma means and what my fate could be. I think I've become much stronger in this regard. I've learned a lot from watching others.  But, and this might sound odd, I think being in my routine and having a fairly normal life has lulled me into having a sense of security that I'm going to beat this and will continue with my routine for decades.   But, and here is the weird part, there are times I'm not sure how I feel about going forward with this massive unknown hanging over me, while I whistle through my routine. I'd prefer things be more black and white. Like why can't someone say that in June of 2019 I'll relapse and be unable to find a drug that slows my myeloma. It would give me a target. A goal. Something to aim for. I'm probably not making any sense. In my head, it makes sense.

I don't blog very often. Not much to say. And part of it is that I've been lulled into this sense of security. Like why blog about myeloma if I'm not impacted by it. (although by writing this, I'm probably jinxing myself. Not like a Robert Durst jinx...but a jinx like it's better not to say something, cause it will come back to bite me). Also, I don't blog much, because I don't want questions about the myeloma and I don't want people asking me about something I wrote or how I am doing.  Let's pretend it doesn't exist. Ironically, I also get a little perturbed when people don't ask me how I'm doing for an extended period. WTF, don't they know I have an incurable cancer. Ask me how I'm doing for crying out loud. Check in with me once in a while. Wait...don't ask me, I don't want to talk about it.

My routine is what allows me to keep going and put the myeloma on the mental back burner. Last summer I had that minor surgery that kept me in bed for a couple of weeks. That wrecked havoc on my routine and challenged my mental fortitude. This week, my off week, I have a slight cold. Enough of a cold that I left work early today so I could sleep and recuperate quickly.  This cold has thrown me off me routine. It's a slap against my routine. It gets my mind whirling, thinking that yeah, if I get truly sick in the future, that it's going to suck and I might not be as strong mentally as I thought. I hate being sick. It's unacceptable. I particularly hate being sick with something other than myeloma. I don't have time for this. I can't handle it.

When first diagnosed, I was really concerned that going forward the cancer would define me. That frightened me.  Recently I reconnected with my cancer coach and I told her that I'm now ok with the cancer defining me. And that I feel like I need to do more to give back to the cancer community. Up until this recent exchange,  I've always agreed with her. But this time I didn't. She told me that since I'm so enmeshed in myeloma and cancer, that I need to find things to think about and do that have no relation to cancer. She used an analogy of how a lifeguard can't save someone else if they haven't ensured their own safety first. Not so fast, my friend. For whatever reason, I've been given this opportunity. Every day I save myself . So it'd be selfish to put blinders on and just worry about me. I'm a speck and have had a good life and have been pretty self focused for ages. Enough about me.

I'm rambling and I haven't even had any cold medicine. I'm not sure what my point is here. Thankfully myeloma has turned into a marathon. But I still need to live for the now. I still need to not get sucked into not throwing caution to the wind. Let it fly, cause you never know. Oops, don't let it fly cause I have decades to go.  This is some whiny shit that I'm writing. But damn, four years is getting to be a while with this thing. Four years is a long time to have an oversized question mark floating over my head. I must shake this cold, get back to my routine and figure out what to do with myself for the rest of my long life.  

1 comment:

  1. Wow, just wow. I swear you have been in my head, hearing thoughts that stay mostly hidden. We are a lot alike.


Berenson Oncology Success Rate

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