As I write this, it’s been six weeks since I stopped my most recent myeloma treat­ment regi­men, the “last ditch” Velcade (bor­tez­o­mib), cyclo­phos­pha­mide (Cytoxan), and dexa­meth­a­sone (CyBorD) ther­apy that was sending my blood pres­sure dangerously high and doubling my pulse rate. I have met with my on­col­ogy team and they are okay with my de­ci­sion to choose qual­ity of life over the in­creas­ing misery of treat­ment.

I should note that my spouse and I agree that this is the right de­ci­sion even though my lambda free light chain marker took a sig­nif­i­cant drop: a case of “the treat­ment was a success, but the patient died!”

Initially I had little or no reac­tion to stopping treat­ment, but soon I was sleeping better and had noticeably more energy in the mornings, wearing out as the day went on and not good for much by evening.

Then I hit detox.

It was 17 days after my last treat­ment. I woke up around 2 a.m. feeling just plain all-over lousy, couldn’t go back to sleep, couldn’t find a comfortable position sitting or lying down. I finally did fall asleep, and in the morning I felt no better, with no energy whatsoever, out-of-breath from taking just a few steps.

I couldn’t do simple things like make breakfast or wash dishes. I took two long naps. Thank goodness for my mate, who has helped me all along the way with love and good advice. Kaitlin is a retired hos­pice nurse, as well as an artist and poet. My loving care­giver and soulmate.

I just had my last Zometa (zoledronic acid) bone strengthening in­fusion. I’ll see my on­col­ogy team one more time next month, and then Kaitlin and I are moving to cooler climes, to spend what’s left of our days out of the in­creas­ingly brutal southern Arizona summers. After my Zometa treat­ment, the in­fusion room nurses gifted me with a group per­for­mance piece they do for those who leave, albeit usually in remission, which is not my situation.

I had purchased a bag of pins with the “Despicable Me” minions on them and, as a token of my grati­tude for all they do, I gave them out to the “minions” who have been so good to me over the past two-and-a-half years: the lab workers, front desk, schedulers, intake nurses, and in­fusion room nurses. To their surprise, and I think delight, I then per­formed this rap after my in­fusion:

I really can’t sing, ain’t got no voice
Gave up guitar, arthritis took that choice
I got some­thing to say, but I don’t like yappin’
So I do it in rhyme and it comes out rappin’

Now patients like us we all got The Big C
Sometimes get down, get fulla misery
But learning to live just one day at a time
There’s joy to be found that’ll get you feelin’ fine

And it starts right here in this in­fusion room
With a great bunch o’ nurses keepin’ us from doom
On their feet all day listenin’ for those beeps
Keep those juices flowin’ even when we fall asleep

They’re nothing but the best at getting in those veins
Needles, ports and ’jections without causing us no pain
They are the very best at taking care of me and you
So don’t give them a hard time, try a smile or two

And while I am about it, let’s hear it for those snacks
Donuts, cookies, home-baked goods – delicious, that’s a fact
And the helpful volunteers who do not have to be here
They come to help no matter what, bring us lots of good cheer

’Cause if we’re feelin’ grateful we should let ‘em know real soon
They work hard to keep us goin’ while we’re feelin’ out of tune
So help me out here, let ’em know, that we really care
Let’s shout out one big “Thank You,” words that are too rare

On the count of three now, let’s do it with a smile
Then you can all go back to sleep, it’ll be worthwhile
One – Two – Three: THANK YOU! Let’s try that again
Say it loud and say it proud and you can wear a grin
One – Two – Three: THANK YOU!

And the patients did let out a big “Thank You”, and the nurses all smiled and laughed and some cried and they all gave me hugs. (I love hugs.) I am full of gratitude for these wonderful people, and for many others who have been going out of their way to be helpful.

At six weeks after the stop of treat­ment, I’m feeling better most days. I have more energy, although I still wear out as the day goes on, and I feel kind of rundown some days. Kaitlin, though, says she’s got the old Albert back!

I’ve had so many “new nor­­mals” these past two and a half years that I’m not sure I know what “nor­mal” even is anymore. I even loaded and unloaded a dozen wheelbarrow loads of gravel to spread on our driveway. It tired me out, and if Kait were here she would not have let me do it, but she wasn’t and I did! And maybe that’s why I felt not-so-great for a few days afterward.

I have some bone pain in my rear lower rib cage, and some new pain in my shoulder. I’m not sure if it’s myeloma, the weather changes, or old age, but I am managing it with a diclofenac topical gel and drops. I have used the topical diclofenac (Voltaren), a non-steroidal anti-inflammatory drug (NSAID), for years now for arthritis in my neck, lower back, hips, and hands ever since acid reflux from doctor-recommended 800 mg ibuprofen nearly choked me to death. I’ve had no notice­able side effects from the diclofenac, and it keeps the pain man­ageable. I really want to avoid pain pills.

I’m still coping with con­sti­pa­tion and diarrhea, but I found a way to deal with that as well. Sprayers that connect to toilet inlets and are mar­keted as “hand-held bidets” are great for breaking stuff up and flushing it out. (Yeah, yeah. TMI. But I thought the in­for­ma­tion might be helpful to a few readers.)

I did some online re­search and found sug­gestions for detoxing. Most of the advice is good re­gard­less of whether or not you have cancer or are detoxing, such as drinking lots of water, exercising reg­u­larly, and eating a bal­anced diet low in saturated fat. I may actually embrace some of the sug­gestions and try to in­cor­po­rate them into what remains of my life.

Never mind that I cooked three pounds of thick-cut bacon this morning.

One day at a time. I did drink lots of water.

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Today’s quote is from neurologist and author Dr. Oliver Sacks (1933-2015), who shortly before his death from cancer wrote: “My predominant feeling is one of gratitude. I have loved and been loved. I have been given much and I have given some­thing in return. Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.”

Editors’ Note: If you are thinking about commenting on Albert’s column, please recog­nize that he and his medical team have given a great deal of thought to the treat­ment de­ci­sion he has reached. As Albert has told us: “Everyone’s reac­tion to myeloma and its treat­ment is dif­fer­en­t. I have been happy with my on­col­ogy team, which truly has listened to me and been willing to negotiate. At this point, I am not really interested in hearing about other possible treat­ment regi­mens, clin­i­cal trials, or medical groups. There comes a time when one says, simply, ‘It’s done.’” We would ap­pre­ci­ate if you would respect Albert’s wishes in any comments you make in regard to his column.