Adventure #2, as of Dec 9

Hi Folks,
Here’s an update from my musings and activity from Dec 2 – 9 on this adventure back into PTCL-NOS.
Quotes I Kept in Mind Last Week:
“My body is broken. But my life is still grand.” 
I am sure many have said this – I cannot find one source.
It’s times like these you learn to live again
It’s times like these you give and give again
It’s times like these you learn to love again
It’s times like these time and time again
Foo Fighters, Times Like These (see two great videos: studio version; live version @ Wembley stadium.)
Thanks Yous
The parents of the Interlake HS Cross Country team brought over 3 waves of sumptuous food. Thank you to Margaret, Eugenia and Michelle. It all felt far above my pay grade. In a very, very, nice way.


I have completed 3 of six infusions. So far, no nausea, only some slight mucositis. Each of these 5 minute injections is a whopping $15,000. Yup, healthcare costs in the US is staggering. (FYI, last July the boys and I were in Vietnam and Cambodia. My younger one had a 102.5°F fever. So a local pharmacist took us to a private hospital. Within 45 seconds of arriving, the chief doctor received us and assessed him. 10 minutes later, they performed an ultrasound on Sidd, followed by an IV for antibiotics and fluids. Cost? The hospital fee was $3 USD; ultrasound was $4 USD; IVs cost $7. Grand total: $14 USD. Hmmm…)
Is my treatment working? I don’t really know but I recall 3 years ago it took at least 3 cycles (each was 3 weeks apart) to see any changes. I have a check-in with the oncologist – perhaps I will learn something there.
How to Really Love Your Luxuries
Part 1: As some of you know, for over 4 weeks I have slept in a concise Ikea reading chair and ottoman. Why, you may ask? The tumors in my underarms pinch nerves when I lie down. Think of hitting your elbow’s funny bone every few minutes. So no worries. Pillows elevate my feet. Pillows elevate my left arm. The upshot: much of the collected fluid from lymphedema drains away into my torso.
Everything changed on Saturday afternoon. I was dog-tired (happens a lot now) and mumbled, “screw it, I’m napping on my bed.” And it worked. Man, oh man! Not in 20 years has my bed felt so luxurious! Same bed. Same pillows. Same everything. But to revisit it after 4 weeks on a minimalist version of a Lazy Boy? What a delectable reunion.
Part 2: The water heater blew on Sunday. So on Monday, the bath was more akin to camping: mix cold water with boiling water from the electric kettle in a 2 gallon bucket. Use a quart sized Chinese takeout container to pour water over oneself. I was surprised that this was about 85% as enjoyable as a regular shower. Hot water, well, it’s awesome if doled out in a cup or via a showerhead. Mom was giddy with the chance to the same (but she’s sturdy like a plank of carbon fiber.) A technician replaced the water heater the next day. The “standard shower” was like a fine dish at a fancy restaurant. Again, so odd. Same shower, showerhead, etc. But you should have seen my smile.
Our Bodies, as Balloons
Part 1: Now I have a night time routine: before going to bed, put a compression sock on my right leg, (which is more swollen) and a compression sleeve on my left arm. Each has an inflated appearance from fluids that did not drain that day. Elevating my arm and leg shows the power of gravity. My lymph nodes may not be able to flush the fluids, but when I wake up, voila! Both limbs looks pretty close to normal. Until the days end comes. Ah well.

Part 2: One impact of the lymphedema is walking in the cold. Ouch! It’s only 45°F  but all my toes were freezing. How is this possible? Then I realized, there’s less fluid flow in both legs. The first mile is not fun. But oddly, warmth comes in to my digits. I guess the calf muscles overcome the indolent elements. Again, I realize how smoothly things normally work. How nice.
Cross Dressing?
The skin around my left breast is reddish and tender. This condition wraps around to the back shoulder. It’s physically warmer to the touch. The patch was much larger 4 weeks ago, and a GP prescribed Bactrim, surmising it may be a skin infection. The aggravated skin shrunk by a half. But it was not gone. And foolishly, I did not arrange a follow-up. At Kaiser Washington, patients arrange follow-ups, not the physicians. I am not a fan of this approach. Perhaps it reduces costs because some people don’t take action, myself included?
My left boob is materially swollen compared to my right one. My boys call them “moobs” (man boobs). Driving is no fun. I feel a slight pang of pain with each bump. My answer has been to put my right hand under my shirt and hold this moob as I drive. I even walk around the grocery store like this at times. One side benefit: a cool hand is a sweet answer to the burning sensation. Does it look odd? It must. But desperate times require such actions.
Then I wondered, how about a jogging bra? Wouldn’t that “tie things down” for the drives? No one will know what I am wearing underneath. It would also be my first foray into women’s clothing. Hmmm… But, better alternatives came along.
At night, I slept with a damp towel in a plastic bag (to keep it damp) and when the irritation woke me up, I would apply the cool towel. So nice. Could there be a better option? At Thanksgiving, my brother-in-law had some tea with CBD oils in it. Hmmm. My local grocery had lip balm made of CBD / hemp oil. It’s been fabulous. I crayon the irritated skin with this wonder product when the itching flares up… and everything goes quiet for at least a couple of hours. How lovely.
Yikes, the ER
Last Saturday, I could not shake a fever. The goal is to stay below 100.5°F. But no amount of water and sleep slowed it down. 99.8°F. Then 100.4°F. Finally, 101.8°F. So the boys, Mom, and I brought things to read and watch, and tromped off to the ER.
My worry were all the super bugs I hear about. But the real concern should have been, “why am I getting fevers in the first place?” Recent blood tests showed my neutrophil count was sky high, as was my white blood cell count. Hmmm, my body was in active battle with something. The conclusion after a battery of tests: it was the infected patch of skin. The ER sent me home with a prescription of an antibiotic that won’t interfere with my infusions.
The redness appears to be slowly shrinking. The irritation still abounds at times (I keep a hemp oil lip balm at the ready always). But my window of opportunity to try a jogging bra appears to have closed. Ah well.
Shapeshifting into a Sloth
I am more exhausted now than I ever was in my treatment 3 years ago. Perhaps it is the more advanced malady. Even at the outset in late October, I recall how my walks puzzled me. “Why is this such a slog?” Now, I think the Folotyn infusions are adding to the fatigue I feel. Certainly there’s the greater difficulty to surmount a hill.
My current fatigue is from a different league than any I have experience before. Maybe not from the big leagues, just semi-pro perhaps? It triggers a more subtle and insidious behavior: to hesitate on the “next action.” Said another way, for transitions from stationary to moving, an oversized Newtonian inertia engulfs me. I don’t just get up from the dinner table. I don’t just hop up from my laptop. For any such action, I sit, wait, think of standing up, ask if I really must do so, and wait more. I ask myself, “What is going on? Why are you waiting?” Finally, I summon my legs and move.
It’s been so eye opening. I have never thought of the challenges of low energy for others. When I see an elderly person moving slowly, I scratch my head and just zip by. No more. When you have the energy, it’s a blessing. Actually, a blessing hiding in plain sight. A blessing I never thought about. When you don’t have energy, you actually need to double down and choose to move. How wild, no?

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