Letters From Cancerland: Winding Down
Call me Tik-Tok.
Tik-Tok was the mechanical man created by L. Frank Baum and introduced in Ozma of Oz. While he appears in other Oz books, it is in his debut that the reader gains an appreciation for Tik-Tok’s mechanical works, including his apparently tireless activities.
There was one catch with Tik-Tok. As a mechanical man, he had to be wound: under his left arm for thinking, under his right arm for speech, and in the center of his back for “walking and action.”
And if he wasn’t wound? Tik-Tok would come to a halt, sometimes mid-sentence, sometimes mid-action, but always to a standstill. And there he would stay, silent and unmoving, until someone wound him up again.
My labs indicate that I continue to be on the plateau that my specialist identified back in February, neither gaining nor losing ground against my myeloma. I continue to work part-time (and am just finishing the annually most grueling part of my job); I continue to volunteer at our monthly legal clinic; and I continue to accompany my husband to almost all of his performances and many of his other professional obligations.
In short, I continue to live my life.
All the same, I continue to lose ground in the quality of that life. There are days I am so tired that I put my head on the table, like a small child resting in a classroom. There are days, most of them, truth be told, when I feel so poorly (a hills phrase from my childhood that I now understand) that even happy events – coffee with a friend, a walk with my husband, long anticipated weekend guests – fail to pick me up physically. I enjoy and savor every one of those moments, mind you, but I enjoy and savor them while wrapped in sickness.
Unlike Tik-Tok, I don’t have a key to wind me up and set me running again as I run down. Taking a break, taking it easy, or taking a nap does not change the equation. Changing my diet, exercising more, exercising less, skipping dessert, or adding two scoops of ice cream to the homemade apple pie does nothing. Both my oncologist and personal physician have poked, prodded, and tried this or that approach to no avail. It is what it is and I am where I am on the myeloma continuum.
A few appointments ago, I half-asked, half-said to my oncologist, “It’s just a long slow slog at this point, isn’t it?” Yes, it is.
When Tik-Tok vanquishes a Wheeler (you gotta read the book, folks), the Wheeler threatens that Tik-Tok will be sorry for daring to tangle with him. The mechanical man replies: “I am only a ma-chine and can-not feel sor-row or joy, no mat-ter what hap-pens.”
Unlike Tik-Tok, I do feel the whole range of human emotions. I am discouraged somewhat by the winding down, but not surprised and, so far, not overwhelmed by it. For some months now, I have been coming to the realization that I am having to learn to say goodbye to the people and the life I love.
Even so, there are still those moments, so many moments, of incredible joy and delight. I am burning my candle at both ends, and relishing the lovely light.
And that is a thought that even Tik-Tok may have been able to feel.
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
April,
Fatigue with a capital F. Question: Is the cause the treatment or the myeloma? Since your numbers are stable, is the fatigue stable, or is it getting worse? I suspect that the treatments are largely to blame. Those of us who have relapsed or have never been off treatment have to put up with fatigue, chemo brain, and all the other unpleasant side effects. However, the alternative is .... What we cannot do is allow depression to creep in. So, as you have said, we must keep in our hearts "those moments, so many moments, of incredible joy and delight".
Keep on keeping on.
Hi April,
Sounds like you are doing a LOT now. You probably just had to go thru the tax season with your work. That is enough to tire anyone out! Maybe you will have to rest more, even tho it is frustrating not to be able to do as much as you did before. Hope you can find a balance that will help improve your energy levels. I have my good days and my bad days too! BTW, I just got the book 'War of the Whales' out of the library here (had it on hold) that one of your readers recommended. Summer reading!
Call me Ishmael or Tik-tok,
I'll call you April and remind you to recall your namesake month is one of rebirth.
I think you are packing it maybe too soon for someone so young. Kyprolis-dex is a really tough regimen on the body and soul, and I'm not sure it is the best one for you. Please consider all the alternatives. Darzalex plus Revlimid would be much less toxic and might be much less fatiguing, and would be a dramatic change biologically from the one you are plateaued on. You can always switch back to your current regimen later since you have not progressed on it. So do you have anything to lose? I know you are worried about quality over quantity of life, but maybe you are sacrificing both?
April,
As a "Tik-Toker in Arms", perhaps this will help, if only just a bit, and not always. And it is always just a cyberclick away when needed.
These are the words to the first stanza of Leonard Cohen's "Anthem". The other stanzas are irrelevant. When I first heard them, I was completely dumbstruck and absolutely certain that Leonard MUST be suffering from myeloma himself. So perfect was the description of his inner life! (Perhaps only to me, of course). These are the words to his poem:
The birds they sing at the break of day.
Start again, I seem to hear them say.
Do not dwell on what has past away
Or what is yet to be.
Oh, the wars they will be fought again
The holy dove [remission, a cure, etc, whatever, my interpretation] she will be caught again.
Bought and sold ... and bought again,
The dove is never free!
Ring the bells that still can ring.
Forget your perfect offering!
There is a crack, a crack ... in everything.
That's how the light gets in.
That's how the light gets in.
These words are so poignant and comforting, especially when sung as uniquely and tenderly as Leonard Cohen does. However, finding comfort and encouragement is such a personal pursuit that this message may not speak to you at all. Hopefully, at least you will know that someone was moved enough by your essay, to make the attempt.
Will
Hi April,
Always enjoy your reflections. You sound like someone accustomed to being able to do it all. I know I just don't have the stamina to operate that way any longer. My body certainly tells me when I'm overdoing it. (Part of that may be age – mid-60s now – but of course, the myeloma / maintenance therapy, as well.) A plateau is not such a terrible place to stand! Perhaps a nip and tuck at everything else you're involved with could give you the satisfaction of living life to the fullest, but mesh better with your current energy level.
Aloha April,
Your courage is inspirational! Thank you for sharing such deep insights into this journey. I hope that I can be as strong as you this late in the fight.
My goal is to not focus on what abilities I have lost, but what abilities I still have. This is easier said than done, but just the challenge of it is what keeps me going every day. My happiness is no longer what I achieve, but instead it is the smiles I can inspire in myself and those around me. I hope you can find your comfort zone.
We are all pulling for you!
Much Aloha
Tom
Love, love your column as always, April. It sounds as though you still manage to do a lot to me. I think you are an inspiration to most of us at the Beacon. Keep on keepin' on!
You are probably doing more than you think. We (particularly women) always seem to feel like we're not accomplishing enough. Enjoy each day and take time to "stop and smell the roses."
I never read the Oz books, but I remember the "wheelers" in the movie, and they were creepy!
Best wishes from Florida!
Gentle readers, I am responding quickly on the brink of a quick driving trip up to Chicago for a not-be-missed symphonic concert in Naperville. For all of you who surmised I do a lot, you are absolutely right. I learned some time ago that resting or doing less makes me feel no better or no less fatigued, so I prefer to keep doing what I want and am able to do.
Ron speculated (as have my oncologists) whether the treatment is to blame for the fatigue. Possible as to the increase. However, the companion piece to the fatigue is the constant “unwell” feeling, which has threaded itself through most of my myeloma history. During my last (unplanned) treatment vacation last summer, it became readily apparent to all that the treatments were not responsible for the unwell feeling. Two oncologists, my husband Warren, and I have concluded that feeling is 11+ years of myeloma, 11+ years of treatment, and 11+ years of being chronically ill.
Because that’s the kicker: having a chronic, terminal cancer drops me into the category of “chronically ill.” I have been fortunate beyond fortunate to not have too many severe or major reactions to either the cancer or any of the treatments, but the reality remains that being chronically ill takes a toll on me. Atul Gawande, in Being Mortal, put it this way: “[An incurable cancer], while slowed, continues progressing, like a night brigade taking out perimeter defenses.” My perimeter defenses are going down one by one.
Thank you for all the kind words and encouragement to keep going. I am not packing it in, yet. At this stage, though, treatment vacations are pretty much off the table per both my oncologists. And I always reserve the right, and will exercise this right when the time comes, to say “I’ve had enough.” I’m not there now, but that day will come. And that’s all right.
I love writing for the Myeloma Beacon and have said more than once (and even wrote about this in one column) that this is my support group. I appreciate you all more than I express. To borrow from a longtime friend, “there aren’t enough words in the dictionary to describe how highly I think of you.”
On to Chicago. Superdawg Drive-In and Bang Bang PieShop are waiting for us!
Thank you for sharing your perspective April. It really is quite valuable for those of us in the early years of myeloma to hear from those who are entering the second decade of life with myeloma. A 'reality check', one might say. Our doctors will never be able to give us this kind of perspective.
RT
Bonjour Avril,
I had a bad day at work today. Unhappy boss, unhappy clients, unhappy me ...
I've been diagnosed smoldering only since January 2016 and kept the 'condition' at bay ... for now.
So I have no idea what you're going through (I can only imagine) and it sounds tough.
This 'condition', it plays with your head. My most common thought? 'Why do I waste my life with work'? Because I have too mainly. Hey ho. Most people do. Maybe you do too.
But your words helped me and I wanted you to know. I can feel you struggling, yet I can also feel your power and I can feel your courage.
Today, you made me stop, close my eyes, and turn my face to the warm sun. And think a while. So thanks for that
That's all; no advice, no homilies, no suggestions from me.
But you keep going and I will too.
Hi April. Just starting treatment on Friday. The fatigue and the unique illness or malaise that follows me is less than a year old, and it feels so insidious and inescapable. It feels lousy, and I think must be very close to what you feel, too. The doctor can only hope it will be helped. I'm sorry you feel this too. The only solace I can offer is my understanding. I will hope for a different light to find you ...
Hello April,
Thanks again for such a reflective article on the effects of your daily treatment. You really captured my own reaction with the use of the mechanical man Tik-Tok.
I have been doing this slog for 5 years, and what helps me most are breaks from treatment. We both read the same book, On Being Mortal, which is beautifully written. Sometimes his beautiful words are reassuring.
I am so glad you are not packing it in, but you have the right to choose that. Just now on a particularly bad day. Right now after my recent break from treatment, my myeloma cells are being aggressive and we are searching for the right drug. To my surprise, I was not ready to give up. Changes all the time.
Keep writing. Maureen
Thank you for your column, April. As always, it is deeply moving. May you continue to find joy, peace and strength in the light.
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