The Final Mile: Crash And Comeback

It had been almost two months since I stopped treatment, and it seemed to be going well. Then I crashed, hard. I woke up in the small hours of the morning feeling miserable, heart flutters, elevated pulse rate, sore all over. It was the same in the morning after a fitful sleep. No appetite, breathless with any movement. Not fun. Like detoxing all over again.
I was better the next day, not 100 percent (whatever that is anymore), but reasonably functional. The crash might have been caused by my pushing a little too hard the evening before, sorting and packing stuff for our upcoming move. It’s hard, but I have to learn that I have narrow limits and have to respect them or pay the price. Weather changes might have contributed to it. I also suspect the camphor smell of an over-the-counter pain patch I was trying out for a new shoulder pain.
After a couple of days I was doing well, able to be out and about, running errands, eating lunch in the park in the winter sun while watching people play tennis. I was out for some six hours and rested after I got home and put groceries away, feeling pretty good. And feeling good the next several days as well.
As I write this, I have my usual arthritis pain and the new pain in my right shoulder sometimes wakes me up at night, but who knows? The weather has been damp, I’m coming up on my 82nd birthday, so it might not even be the myeloma. My oncologist said if pain in any particular places got worse they could try radiation, but I’d like to avoid that if I can, and stay off pain pills any stronger than acetaminophen (Tylenol, paracetamol). I’m really done with side effects.
My sweetheart Kaitlin and I have bought a manufactured home in the Southern California mountains and will be moving there soon. It’s an area Kaitlin spent a lot of years in, so she has roots and friends there, and it will be a safe place for her when I am gone. The Southern Arizona summers have gotten hotter year-by-year and she could not survive here. I can live anyplace, and have, from big city tenements to small city middle-class homes, in suburbia and rural areas, near the ocean and in the desert. I can now complete a circle with a small town in the mountains, and know that the love of my life will be okay when I’m gone.
California has a “Death With Dignity” law, in effect over three years now, that allows a physician to prescribe life-ending drugs for terminally-diagnosed patients at their request. My sense is that not all doctors are on board with the law, but there are enough, as well as some hospices, and support groups. So people in my situation have options, with built-in safeguards, which is good to know.
Kait is doing most of the work, packing and sorting and driving 800 miles round-trip to make the new place, dubbed Ruby’s Rest, ours. She has a real artist’s eye for layout and decoration, and I’m looking forward to the results, especially with a living room wood stove that our old dog, Gus, and I can sit in front of. My ability to help is limited. I continue to have more energy most days – except when I crash – but also still wear out as the day goes on, and am pretty useless by evening. I am learning, often the hard way, to pace myself.
As a sidebar, let me say that it seems to me that you get back what you put out, and an attitude of gratitude seems to bring out really good stuff from others, for which I am grateful. For example, while Kaitlin was in California working to make our new home ready, I went to a local hospital to try to obtain some records she had been unsuccessful in having sent to her doctor. I had tried to get the records through the hospital’s website and was referred to an out-of-state phone number, where I was told I just had to fill out a form and take it to the hospital. So I did.
I had not been at that hospital for three and a half years and things had changed and I ended up walking a long way to the entrance, which turned out was no longer the entrance. I walked further to find the main administration offices, and was exhausted by the time I got there. The most walking I’ve done in the last two and a half years is 100 steps to our mailbox and 100 steps back, with a rest stop in-between, and I used to be an avid hiker.
The young woman at the front administrative desk, Jasmine, saw my plight, found a wheelchair and wheeled me to the records department, which produced the paperwork I needed in minutes. Then Jasmine wheeled me the long, long way back to my car; with intelligent conversation along the way. She accepted a hug as an expression of gratitude, and I later wrote a note to her bosses telling them how lucky they were to have her.
Our holidays last year, in case you’re interested, were quiet, without Kait’s usual decoration of the house and my setting up luminarias outside, but our exchange of presents was loving fun, and even Gus joined in with a new toy. With the impending move to the mountains, the theme for both of us was warm. And I got an unexpected holiday treat: I was shopping in our local super market the week before Christmas when suddenly there was singing, a mother and her young daughter happily singing “Do Re Mi” from “The Sound of Music.” I joined them, and we all smiled with joy, as did other shoppers. I wish “Peace on Earth” were that easy.
I still wear out as the day goes on, but to end on another cheery note, my bowels are slowly returning to some semblance of normal (if I forego that second big cup of coffee in the morning).
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Today’s quotation is from Myeloma Beacon commenter JoAnn Beetschen: “My ‘one day at a time’ has been renamed to ‘life is a sunrise.’ I sit each morning and watch the sun come up, drink my coffee, and hope that I will make the best of the day I have been given. That is all any of us can do: enjoy the day.”
Albert Vetere Lannon is a multiple myeloma patient and columnist for The Beacon. Albert’s first column was published last November. Due to unforeseen circumstances affecting the Beacon’s editing of Albert’s columns, there has been a delay in their publication. The column above, for example, was written by Albert in January. The Beacon, however, will be catching up with publication of Albert’s columns in the coming weeks.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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 columns.
Good luck on the move. I will follow your journey!
From your article, it sounds like you've got your ducks in a row. I hope you and Kait enjoy living in the southern California mountains. I feel the same way about more treatment, etc. and I only use Tylenol for pain.
I love your transparency and celebrate that you seem to feel pretty well most days. Blessings to you and Kait on your new home!
Albert,
Your column was a breath of fresh air to read and absorb. I have only tried one brief course of treatment and stopped because of side effects. I am 79 and have pondered whether I really want to try to go through a number of different treatments with the varied side effects or to just let nature take it's course. While I am still in somewhat fairly good health, I have existing co-morbidities which would most likely be exacerbated by any further treatment as you were. I also have multiple sclerosis and am mobile, meaning that I can walk unaided for short distances.
My honey and I have traveled a lot and we are comfortable in our present lives. I only hope that he will accept that I don't feel like I want to pursue further treatment when I start to decline from myeloma. And yes, this is a discussion I need to have with him soon. It will be hard on him as we have been together for 55 years, but I would accept the same decision from him if he chose this way. I have read too many people's treatment odysseys to want to go that route.
Bless you and Kaitlin.
Nancy and Kay – I know it's a tough decision to make, and others who love us do not always understand our choices. My mate, a retired nurse, fully agrees with and supports me.
I do find that diclofenac (Voltaren) topical is helpful on the ribs when they ache, and I've taken to using a prescription 5 percent lidocaine patch on my lower back that gets me through the day okay. Tylenol every other day or so. One day at a time. And I have to remember that I am 82 years old, with other afflictions.
Carol and Dana – Thanks for you good wishes. Kaitlin and I are enjoying the mountain coolness after the early heat of Tucson.
Albert, oh bless you. I picture you with the love of your life and your dear old dog sitting in front of your wood-burning fireplace receiving warmth, comfort, and affection, and I smile. Your decision is such an encouragement to me, with smoldering myeloma, Type 1 diabetes for 65 years. I’ve already beat the odds, eyes with AMD and glaucoma, arteries throughout full of calcium and partial clots it seems everywhere. At 77 years and with the limitations of these co-morbidities and knowing any treatments will exacerbate each, I greet each morning with joy and end each night with gratitude. Just like you. I’m so lucky and I smile and laugh outright just looking around. A few nights past while looking out across the balcony, there was Polaris, the North Star, shining back, and I was amazed. Wonders!
Albert,
Thank you for sharing your journey with us! Making the hard decisions when it comes to our disease isn’t easy, but we each have to follow our own path. You and your beloved Kait seem to be be on the same page, which I think is wonderful. You are doing what is best for you, and that’s important. Good luck to you with your move to California.
Patty
Thank you. This is where we are, too. Thankful for another sunrise, coffee, something delicious to eat, our dogs, and the routines.
Hello Albert – Thanks for the heartfelt column about your move and your plans for the future too. I hope you enjoy all of your time together in your new home! I have had friends with myeloma who ended their days in a hospice setting. They had no options left to treat the myeloma. It seemed like a good thing to do, and their family and friends could visit too. I did not make it on time to the hospices to see them there, but remember them fondly. One of the people I had spent a lot of time with, as he was the pipe major of the band I played with for 20 years. It seemed strange that I had so far escaped the inevitiblity of not responding to treatment options though.
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