What Are Words For?

By Matt Goldman

3 min read

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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Paula Rosado Moderator
<inline-mention user-id="3648536" username="Matt Goldman"/> I had totally forgotten about that tune! I watched the video on You Tube. Ha! Sometimes there just aren't any words that totally convey what we are feeling and going through. I think that's ok. It may be seen as a pity party, but to me it's processing emotions. Taking the time to really allow myself to feel, understand and deal with it on my terms. So, take that time-out! Everything is on a need-to-know basis, and no one needs to know. All the best.
Ronni Gordon Contributor
Speaking from the point of one who knows, it can be really draining to have a chronic illness. Then along comes the pandemic and makes it worse. If you're not interested in anything, you could be depressed, though. As fellow advocates we know we don't give medical advice, but I'm wondering if you've talked to someone about how "blue" you are feeling. There are lots of things to do about it! For starters, are you making sure to get exercise? Maybe by now you're already feeling better, who knows? These feelings come and go...
Ramae Hamrin Moderator & Contributor
Oh, Matt, I've been there so recently. From March until July I couldn't write a thing. I just didn't know what to say and was so done with my perceived lack of caring from society, even from family and friends. I just wrote about it on my blog if you're interested. Anyway, I get it!!! Also since March I've had 6 friends die of cancer, was in the ER twice and the hospital once. It was a wakeup call that I better dig myself out of the hole I was in try to enjoy the incredibly short summer we get here in Vikings land. I refuse to believe that this is as good as it's gonna get. I get scared too, but I also make the effort to dream big and try/do new things. I'm going to write more about that in the coming weeks/months too. Have you thought about getting a rescue dog? Ziggy helps keeps me sane, even with all his shenanigans!
Ann Harper Moderator & Contributor
<inline-mention user-id="3648536" username="Matt Goldman"/> yep, we all need a pity party every now and then. Cancer sucks and it's not fair. To add to that are any other illnesses we might have. It can be overbearing at times. This is our space, so vent away. Things will look up tomorrow. Good luck to you.