It's Monday and we're seeing Berenson, the myeloma specialist, today. I imagine we'll be changing up the chemo drug mix and discussing next steps. I am going to push for lots of stuff and lots of stuff soon. Bone marrow biopsy, kidney biopsy, start the stem cell harvesting process. I'm 3 months into this shit hole and it feels like zero progress has been made. In fact, it feels like the opposite of progress has been made. What's the opposite of progress? Crap, that's what. I think about this thing 24/7 now. The mental exhaustion is almost worse than the physical fatigue.
I'm not writing this post because I want some words of wisdom from anyone or any positive "atta boys". I am writing this, because I'm tired of it already. I have this October date in mind for going back to leading a somewhat normal life. I've always been active, healthy and independent. My life now is anything but those 3 things. When everyone talks about "quality of life", are we talking about how I am living right now? Cause this sucks. If it's October and I'm not improving, it might be time for me to emulate Marley in Marley & Me and find a tree to sleep under for my final days. I thought that was going to be a happy dog movie, but it sure wasn't.
Last night in doing some research on Berenson, I read a linked story from 2 years ago about a local, young police office and his brave fight against myeloma and how great he was doing. Curiosity got me searching how he is doing now....two years later. Two months ago...his memorial service. Awesome.
If my treatment changes and I start feeling worse, I'd imagine there will be a point where I can't work any more. Sure maybe I can collect disability, but how's that compare to working? It doesn't . And cause of my medicines and treatment, I won't be able to waste my monthly disability check on booze and junk food. What fun is that?
I want Leslie to lead a normal life. She's living this 24/7 and is amazing. But how fair is that...she needs to do other stuff once a while. I'm feeling like a burden and pity case to everyone. I don't like being a burden.
Jan and Michelle had a bbq at their house the other day. It was very nice of them. I got a lot of hugs and "how're you doing?", all with that pity look in their eyes. When leaving, one person said to me "don't be a stranger." Ummm...ok. I don't see you often even when healthy. Weird. Awkward. And the awkwardness likely comes from me. One of my best friends, Matt Arms, has been absolutely awesome during this whole time. But I worry that at some point he and friends will fade away.....24/7 myeloma conversation and new medicine talk will only take a friendship so far. Family.....family is tricky even in the best of times. We're all trying to figure out how to balance the family concern/worry with what my needs are. And like I've said before I need to get better at communicating and putting my foot down.
So you see, October is huge. I turn 50 and that's my target for leading a somewhat normal life. And that's why today and this week are huge in my mind and I am a nervous wreck.
The LLS has a whole host of free booklets on key support topics. Follow this link to download or order. One such booklet has to do with ...