The Big C and Me - Part One





Albert Vetere Lannon

 
© Copyright 2019 by Albert Vetere Lannon
Photo of two hands holding on hospital bed.
 

1. End of the Road

I am 81 years old, diagnosed with multiple myeloma, an incurable bone plasma cancer, in June 2017, when I sneezed and broke two ribs. I went on a “Chemo Lite” regimen, two sets of pills and a weekly injection. The injection toxins caused neuropathy in my feet and added a rare auditory neuropathy that muffles my hearing, so it was discontinued after a few months. My hearing remains impaired and my feet numb.

Information is surprisingly sparse on what comes with relapse when there are no more realistic treatment options. I’m facing that situation now and thought I’d chronicle my journey along this next part of the road in hopes that it will be of use to others.

While on RVD lite, my lambda free light chain marker number went from an initial level of 269 down to 29. The high end of the normal range is 26, but I was told that up to 50 is acceptable at my age. In August 2018 my lambda marker began creeping up – 59, 85, 105 – and in October I went off RVD lite and started infusion therapy.

The new treatment regimen took my lambda free light chain level down to 91 and then 86, but then back up to 100. The side effects, however, included heart issues with dangerously high blood pressure spikes, which at one point caused me to pass out and convulse. I should mention that I have one coronary artery stent, which is about 17 years old, and I also have mild COPD (chronic obstructive pulmonary disease). And arthritis. (I am, after all, an old man.) I also received monthly infusions of a bone strengthener. Those eventually were switched to an infusion every three months.

A new infusion regimen initially knocked my lambda markers down to 92, but in a few months it shot up to 191. The myeloma was eating it for lunch!

So I switched to a third infusion therapy and my lambda light chain level went down to 89. Yay! It was worth the fatigue, shortness of breath, and the limited energy. Treatment was interrupted, however, by a bout of pneumonia, which intravenous antibiotics knocked out in a few weeks.

When I resumed treatment my lambda level was up to 230, but it got knocked back down to 160. My good reaction made me a prime candidate for a shorter infusion time, but that sent my normally low blood pressure up, so I stayed on what was basically an all-day infusion once every week, going to once every two weeks in mid-June.

After reaching 160 in June, my lambda level went up to 313 in early July, 363 in late July, and a first all-time high of 498 in early August. I was then put on a “last-ditch” regimen consisting of an injection and two sets of pills administered once every week. This initially brought the lambda free light chain level down from 498 to 411, but four weeks later the numbers were only down another ten points to 401.

The downside of this regimen has been that the side effects have gotten worse each week. Most recently, my systolic blood press reading went up to a dangerously high 178, and my pulse rate was 140, twice my normal level, for several hours. There’s also been fatigue, swollen ankles, loss of appetite, shortness of breath, constipation and diarrhea, and the usual steroid crash.

So I’ve chosen to discontinue treatment. I met with my oncology team and they are okay with my decision to choose quality of life over the increasing misery of treatment. They already had mentioned hospice at one of my previous appointments, although I think it’s way too early for that.

I often say that I don’t know what’s the cancer, what’s the treatment, what’s just being an old man, and what’s a combination of all three. There may be clinical trials I could try, but, frankly, those seem like too much work with record-keeping and uncertainty.

I am 31 years sober and have learned to live one day at a time, and to find the joy in that day. And I don’t feel any different today than I did yesterday or last week. I’m hoping, frankly, that by stopping treatment I’ll feel better! At least for awhile.

We live in a rural piece of the Sonoran Desert outside of Tucson, Arizona, in a double-wide manufactured home on a one and a quarter acre lot. Our front half is natural desert, and the back half is fenced and an oasis with trees and gardens. Both are habitat for a wide variety of critters, and I enjoy and learn from them. Just a few weeks ago my spouse, helpmate, and best friend Kaitlin called me outside to witness Mom and Pop great horned owls teaching their two offspring how to get around in a big mesquite tree.

The joy is there for the taking if we are open to it. I read a lot, I write a bit. And I remain filled with gratitude for my life.

Everyone’s reaction to myeloma and chemotherapy is different.  I have been happy with my oncology team who truly listened to me and were willing to negotiate.  There comes a time, for me, when one says, simply, “It’s done.”

One day at a time.

2. Detox Blues

Shortly after discontinuing treatment my light chain numbers dropped significantly, from 401 to 302. But I was feeling better and that did not change my decision. It was going to be 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 laying down. I finally did fall asleep, and in the morning felt no better, with no energy whatsoever, out-of-breath from taking a few steps. Couldn’t do simple things like make breakfast or wash dishes. 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.

It’s possible that the detox reaction was exacerbated by some stress – we are planning to move away from the desert heat of Southern Arizona’s increasingly long hot summers which keep me indoors and have taken a toll on Kait. Lots of details, research, financial hocus-pocus, planning. I didn’t, and don’t, feel the stress, but I’m sure it’s there; I’m thinking about it a lot.

I was considerably better the next day after sleeping well. But faded with some unexpected activity needing my attention. The gas company was replacing our line and broke our water line. Kait was getting ready to head west for the home inspection of the place we are buying. I still have no real appetite, although I am enjoying food more when I make myself eat it.

So: one day at a time, and I don’t make any elaborate plans for my time. It takes about 21-28 days for the immune system to start to recover, and three to six months for the side effects to go away and feel sort of normal. I’ve had so many “new normals” these past two-and-a-half years that I’ve forgotten what “normal” even is!

The neuropathy may get a little better, but won’t go away, but otherwise, I should actually feel better, at least for awhile. Kaitlin says I’m looking and sounding more like my old self. The doctors won’t give me any estimate of how much time I may have, but said it’s better to think in terms of months rather than years. At my age, 81, that is true with or without multiple myeloma!

I did some online research and found these helpful suggestions for detoxing from the Mayo Clinic:
All of which are good ideas with or without cancer and detox. And some of which I may actually embrace and try to incorporate 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.

3. Rappin’ It Out

I just had my last bone strengthener 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. 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 gave them out to the “minions” who have been so good to me over the past two-and-a-half years as a token of my gratitude for all they do: the lab workers, front desk, schedulers, pharmacist, 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, candy, 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.

About the rapping: I was a high school dropout until I got sober 31 years ago. I obtained my GED and then started going to San Francisco State University. My union career, and my first marriage, was lost to drinking, and the factory I had gone to work in was closing, but I was able to put together teaching for various Bay Area Community College Labor Studies programs. That was mostly in the evenings, so my days were free to go to school. I quickly knocked off a Labor Studies BA and then went for one in Interdisciplinary Creative Arts, all the stuff I had never had time for. With the help of the late Christine Tamblyn, a cancer victim herself, I emerged as a performance poet, and that evolved into rapping. Who knew?

At six weeks post-chemo I’m feeling better most days, more energy, although I still wear out as the day goes on, and feel kind of rundown some days. My mate Kaitlin says she’s got the old Albert back! I’ve had so many “new normals” these past 2-1/2 years that I’m not sure I know what “normal” even is any more! I even loaded and unloaded a dozen wheelbarrow loads of gravel to spread on our driveway. Tired me out, and if Kait was here she would not have let me do it, but she wasn’t and I did! And maybe that’s why I felt not-great for a few days afterward.

I have some bone pain in my rear lower rib cage, and some new pain in my shoulder; the doctor and I are not sure if it’s myeloma, the weather changes, or old age but I’m managing it with diclofenac sodium topical gel and drops. I’ve used diclofenac topical, technically an 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! No noticeable side effects and it keeps the pain manageable. I really want to avoid pain pills.

Still coping with constipation and diarrhea, but found a way to deal with that as well. There are sprayers marketed as “hand-held bidets” for sale that connect to toilet inlets. Breaks stuff up and flushes it out, and makes my hemorrhoids happy! (Yeah, yeah, thanks for sharing, Albert, but TMI….)

4. Death With Dignity

My latest lambda light chain numbers are in: 727, my personal record high and nearly triple what they were when I was first diagnosed! I’m obviously still alive or couldn’t be writing this, but I want to share with you some thoughts. I’m not a believer in ghosts, or spirits wandering among us, or in an afterlife with winged angels flitting around the heavens, but I’ve learned in my eight-plus decades that there is so much we don’t know about everything. We know that we don’t know what most of the human brain is used for. We know that at the moment of death several grams of weight are lost, explained by religion as the soul leaving the body. And I’ve had a few experiences I cannot explain that leave me open to ideas I would have once rejected out of hand.

For instance, there is my late Aunt Josephine, my father’s only unmarried sister, who held séances to talk with the dead. My mother went to one where Aunt Josie was going to try to communicate with my father, who had died in 1969, and Mom came back somewhat shaken. She wouldn’t talk about it with me, but there never was any evidence or suggestion that Josie was a fraud, or trickster.

And in 1982 I had my own out-of-body experience, my oobie. My wife and children had all had bouts of a nasty flu, and then I came down with it. I was a union business agent planning to run for president of the largest mainland local of the International Longshore and Warehouse Union, so I needed to take care of business. I stayed in bed eating aspirin for the 102 fever and did my best to deal with union affairs by phone.

On the fourth day things changed. I was spiking 105+ fevers, and ended up hospitalized with pneumonia. But before that, I had this experience. An unseen presence came into my bedroom and summoned me to lie prone on a cloud. It then took me high into the sky on a journey completely around the world. Lots of cloud cover. Then back into the bedroom which was subtly changed.

The room was suffused with a golden glow, like sunlight through beeswax, and the window shades had been replaced by long strips of blue gauze hanging from dowels. Sick as I was I wrote it down so I wouldn’t forget it, as if that would have been possible! At one point I got up to go to the bathroom and saw myself in the medicine cabinet mirror; my face was black and blue as if I had been beaten up. Fever dreams? Oobie?

Whatever it was, when I recovered I read all I could find about out-of-body experiences and set out to bring on an oobie, but without the life-threatening illness. I learned to deeply meditate, and tried and tried to have an oobie, but never succeeded, and eventually gave up.

My mother died during open heart surgery in 1996. I had taken her to the hospital and my last words to her were, I love you. A week later I was getting ready to rehearse on an old alto saxophone in the San Francisco ground floor flat my second wife and I lived in. I was eight years sober, and trying out all the things I never had time for during my drinking days – tap dancing, playing the cello, trying to improvise jazz on the sax. I found that when came to improvising I had exactly one riff in my head; Bird’s reputation was safe!

I closed the doors and windows to minimize impact on our neighbors. It was a still and warm Mission District day, when suddenly a breeze swept through the room. The window and door rattled, papers rustled, my hair stood on end and without thinking I said aloud, Mom? And then it was gone. Others said later that they had heard of similar stories where loved ones had not had a chance to say their goodbyes, to process the death.

So who knows? If I can send a dispatch back, I will, but as far as I know no one has been able to do that. And it’s impossible, I find, to imagine nothingness.

My story will be incomplete without this: Moving back to California will give me access to the End of Life Choices Act which permits doctors to prescribe life-ending drugs in terminal cases, with appropriate safeguards. I’ve had long discussions about freedom of choice at the end of life and joined the Final Exit Network before they did away with local affiliates. I may choose to voluntarily leave this world rather than continue in pain or zombied out with heavy-duty pain-killers. I truly believe in freedom of choice when faced with certain death, especially after watching people I cared about linger in misery or comas while their loved ones were forced to share that prolonged agony. I respect hospice, and palliative care is the appropriate route for those who make that choice. We all have choices to make throughout our lives, so why not at the end of life?

At seven weeks after stopping treatment, and despite the record high marker numbers, I’m still doing okay: Kait and I went to an evening jazz concert this week, and a movie, and dinner out. I have some increased pains, and am investigating OTC pain relief patches to assist the diclofenac and keep me off pain pills.

Kaitlin is going back and forth to California to get the new house ready and I’m sorting books and CDs and clothes. I don’t know how long I’ve got, could still be a year or two, or less, but I will enjoy the time I have and share my gratitude with those I meet. I love this quote from neurologist and author Dr. Oliver Sacks (1933-2015) who wrote this shortly before his death from cancer:

“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.”

To Be Continued….




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