a man is miserable on a roller coaster with fellow passengers who are all doctors and who are all enjoying the ride

What Are Words For?

Do you hear me?

Do you care?

From the song: What Are Words For? By: Missing Persons, 1982

The 1980s seem like yesterday to me, but they were over 30 years ago. This song was almost 40 years ago. I still love it. We don’t have kids, but if I had young kids, would they complain about me listening to new wave music in the theoretical minivan? Would they see me as an old geezer? It would probably be similar to when I was young and my parents seemed so old with everything they listened to. Although I will say, now that I’m an old guy, I love big band music. It’s just so cool.

The cancer emotional roller coaster

Time certainly does go by fast. Too fast. I’m turning 59 later this year. I was 49 when diagnosed. I’ve been on the same treatment for almost 4 years now. This is the longest of any regimen I’ve been on. Lately, I've felt a little achy and a little more tired than usual. But all of my myeloma labs look great and stable. But it’s frustrating nonetheless. If it’s not the myeloma, then it might be the wear and tear of my 59 years, combined with 9 years of continuous treatment and being on the cancer emotional roller coaster since 2011. And if it is just how things are going to be, then that is really maddening.

I have my local oncologist who diagnosed me and it’s in his office where I do my infusion. When I first started with him, he had three infusions chairs and two nurses who did everything. Since then he has moved his office twice to get more space. Now he has at least 15 chairs, five nurses, and an admin staff. I talked to him the other day and he thinks it might just be my mental state.

Is it the myeloma, or something else?

I saw my myeloma specialist this week. It’s been a few months since I’ve seen him. I see my labs pretty quickly and if I see everything is stable and I’m on cruise control, then there is no reason to see him. Whereas my local is only ten minutes away, my specialist is 35 miles away, and with L.A. traffic it can take two hours each way. Not fun. I think since I am nearing 10 years with myeloma, I’m starting to get relaxed about it, meaning there is a part of me that figures I’ve had a good run and the rest is a bonus. Conversely, the other part of me is mad and a bit scared. There’s a feeling like I have been cheated and think this is as good as it is going to get.

My specialist says the myeloma is great, not to worry. No secondary cancer worries either. But he does want me to see a rheumatologist. He’s thinking perhaps I have some sort of autoimmune issue or arthritis that has flared up. Ok, let’s add rheumatologist to my medical team. I think that makes six doctors on that team.

I haven’t been writing much, either in this space or on my own blog. I’m just really over writing about and talking about my cancer. As time passes, I’m less interested in being social, less interested in talking on the phone, and less interested in writing. Generally, I’m just bored and fed up with this whole cancer thing. I know people say it’s better than the alternative. Generally, I am a positive person and I try not to complain much, but it’s nice to vent and have a pity party now and again.

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