Cancer Health Health Barometer Mantle Cell Lymphoma (MCL)

“Not with a bang but a whimper” (health update)

❝ Hey you! I hadn’t seen a health update in a while, and I really wanted to know how you were doing. ❞

It’s been a while since I last posted an update about my health or my ongoing adventures with cancer, remission, and lymphedema.Β  Between our societal exhaustion of the pandemic and my own personal fatigue of dealing with the after-effects of cancer, chemo, lymphoma, and lymphedema, blogging about my health wasn’t as high a priority for me.

I was surprised and very thankful to hear from a beloved and old friend yesterday. It was really nice catching up with her, and she asked about my latest health.Β  She reminded me it’s been a while since my last update, so it prompted me to post this update.Β  Rather than retype much of what I told her, I thought I’d copy much of my summary here.

I really can’t understate how surprised and thankful I was to hear from her.Β  She’s someone whose opinions, observations, and life experiences I greatly respect and admire.Β  It’s fascinating how our lives have paralleled each other.

β€’ β€’ β€’

While being told “you have cancer, it’s Stage 4, we need you to go to the hospital for IV infusion” is pretty dramatic and a singular event, recovery isn’t so dramatic or so singular.

I’m on my third remission, it’s the longest so far, but the effects of 3 years of chemo and an imperfect bone marrow transplant continue to linger. The lymphedema of my left leg is such that at any given time, my left leg is 2-3x the size and weight of my right leg. It means I get cellulitis far more often (2-3x each year), and I get hospitalized each time for sepsis accompanying the cellulitis.

In these past few weeks as I try to walk more, hike more, and get out more, it means I walk funny as I try to put more weight, stress, and maneuverability on my right leg. It also means that twisted my leg and loosened my ligaments in my right knee. I had two x-rays of my knee, thankful it doesn’t need surgery, but means I need to wear a soft brace while I try to exercise more to strengthen the muscles in my legs.

I ought to write it all down and post it, but it’s tedious and ongoing (feels never-ending sometimes).

I wish I could have gone to Defcon 30. I had several friends who went, told me about the exciting time they had, and sent pictures. I still would like to go to Burning Man sometime. I figure I’ll have an easier time at Burning Man than at Defcon since it’s easier to maintain personal space and take various hygiene precautions/wear.

Still somewhat immunocompromised, so I work from home full-time, I try to limit my socialization, and it’s pretty funny (not really) how quickly sick I get from time spent around others who think they aren’t sick, or “it’s just the sniffles, nothing really, I’m not contagious” and then I end up in the hospital for a couple of days for IV antibiotics (which is a true story, exactly what happened after attending the wake and funeral of Vicky’s Dad)

Humor, sometimes dark humor, certainly helps with coping. Especially around others, who either have misconceptions about what cancer is, what cancer is like, or how they see it/handle it in others.

People don’t alarm me any more with their reactions. I don’t answer the trolls anymore, but will answer those genuinely curious or dealing with similar issues. My first few outings to the movies or to the restaurant were frustrating or exhausting.

And yeah… the pandemic has been something else, especially with how some people deal with it… or don’t. Since it’ll definitely knock me down, out, or kill me, I avoid others who I suspect have covid.

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