A Different Feeling of Isolation

When I was diagnosed with myeloma in 2011, it changed my life. Too many changes to list here. But now that we’re sheltering in place/on lockdown, I have a lot of time to think. And I’ve been focusing a lot about the comparisons and differences between then and now. When we went into lockdown mode a few weeks ago, I thought it would be just like when I was first diagnosed. I assumed it would be a piece of cake and that it’d be no different than 9 years ago. And, wow, was I wrong.

My experience with myeloma

When I was diagnosed, I felt horrible. I was weak, fatigued, anemic, and scared. I was still working at the time. At work, I’d avoid handshakes, try to avoid elevators with more than two other people in them, built a crude home workout area so I could not go to the gym. I was 49 at the time, and since then, I have definitely developed habits about being careful and avoiding germs, given my super low immune system. My wife took over many of the things I had been doing for years. She educated me on being safe. While I’m not a massive control freak, I’ve always been independent and really get anxious when people do things for me. I just didn’t and don’t like it. But I felt terribly sick and physically couldn’t do much. I needed the help from others, and particularly needed the help from my wife, my caregiver extraordinaire. So not only did I need the help, I appreciated it and welcomed it. And for my wife, she had a known enemy; myeloma, and she could focus her energy on that.

Now that I’ve lived with myeloma for nearly a decade and am feeling as good as I’ve felt since way before my diagnosis, I’ve regained my independence and am doing most of the things I used to do. I haven’t needed much help and I like being busy and taking care of things. Admittedly, I’ve gotten a little lazy with my germ avoidance. Yes, I still have a pretty lousy immune system, mostly treatment-related. But I’m confident that many of the good habits I developed have been ingrained into my muscle memory and I’m being cautious without having to think about it. And that’s the reason why when lockdown began, I thought "I’ve got this, no problem."

Isolation and feeling fine

Wrong. I’ve always believed the caregiver role might be tougher than being a patient. And now that we’re in lockdown, my wife’s role as caregiver has morphed into something a bit different and much more challenging. For her, and for me, COVID-19 is more of an unknown than myeloma, and much scarier. My days now consist of an early morning walk, then I’m home the remainder of the time. I’ve had to relinquish a lot of independence again. There’s a lot of things I can’t do now. And whereas, when diagnosed with cancer, I needed the help, now it’s a bit frustrating. I feel great. I feel like I can do anything. I feel guilty watching my wife keep me safe. But the fact is, I am severely immune-compromised and I’ve had lung issues resulting from my cancer. I’m particularly high risk for catching the coronavirus. But my bravado, perhaps machismo, has me particularly bothered that I can’t do what I’m used to doing. I try to help my wife, and she tells me to go inside or go sit down. It’s weird.

Yesterday I had my monthly Darzalex infusion. I was a bit nervous about going to my doctor’s office. But I was confident that he had strict protocols in place and there would be nothing to worry about. For my wife, and my mom, me getting treatment was nerve-wracking and frightening. My wife knows me. She knows that I'm not the best germ avoider. I touch things. I check things out. I wash my hands for only 5 or 6 seconds, and they're vigilant and adamant about me staying safe. Obviously, I’m extremely careful, but I see the virus as something different than cancer. Myeloma is a known unknown. The virus is an unknown unknown, and that’s scary.

A feeling of uncertainty and change

One other difference from 2011 and today, is that until about early February of this year, I had my dog Gracie by my side. Keeping me company, reading my mood, and how I felt. We don’t have kids and she was our baby. I honestly don’t think I could have gotten to where I am today with my cancer recovery without her. Sadly, she developed her own cancer and is no longer with us. It is so strange not having her with me and with us, as we spend countless hours at home. It’s heartbreaking. It’s lonely. There are times I think I see her or hear her. She’s not around to snuggle or annoy. She’s not around to break the tension of dealing with an unknown. Strange and sad times right now.

Editor’s note: This article was published on April 23, 2020. Further developments in what we know about COVID-19 are continuously emerging.

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