Recently, the cat who keeps me company at the Post Office, Curly, disappeared. She adopted our office as her home seven years ago. She spends her day sleeping in a chair atop a red, white, and blue blanket knitted for her by one of our customers. At night and when the office is closed, we place her outside to fend for herself.
This year, winter came early to the Hood River Valley. Our first snow fell on November 9th. Then, just in time for Thanksgiving, the weather turned cold, very cold. While acclimating to the season’s onslaught, I was also grappling with my doctor’s suggestion to renew treatment for my blood cancer, multiple myeloma.
I understand the proactive thrust of Dr M’s idea. Clinical trials demonstrate that low dose oral chemo can extend remissions in patients who have undergone a stem cell transplant. Nonetheless, I waver. The fact that I feel good makes me hesitate. Why set the clock ticking on treatment now? Shouldn’t I wait until I’m symptomatic?
As I contemplated what to do, the cold snap broke and torrential rains threatened to flood the valley. Last week, the snow returned. Several brief storms dusted the trees, decorating the shoulder of each branch with white epaulets. Then, the full moon joined with the solstice and bore the gift of a lunar eclipse. In years gone by, such heavenly triangulation would have prompted pagans to sacrifice an animal. After all, angry Gods must be appeased.
That was when Curly disappeared.
In a world full of unpredictability, Curly’s steadfast appearance at our back door each morning, is appreciated. Throughout my workday, the transactional banter that accompanies the selling of stamps often includes an inquiry about Curly. Customers want assurance that she is safe. In this way, she acts as a touchstone helping to forge bonds in the community that would otherwise be absent.
After four days of worrisome questions from admirers, my faithful companion reappeared. She seemed no worse for wear, just hungry and sporting a suspiciously torn claw on her back foot. I theorize that she entered a building from which she could not escape.
Curly’s return brought to mind an old folk song: The Cat Came Back. The tale it tells speaks to the resilience of cats, uncanny in their ability to land on their feet in the most dire circumstances. As the song progresses, it takes on sinister overtones. The cat not only comes back but does so with a vengeance that grows in proportion to the effort to be rid of him.
Something similar occurs when cancers relapse. Remissions imply that one’s cancer has disappeared. With many blood cancers, however, the disease exists undetected in a dormant state. It is myeloma’s capacity to evolve that makes it, thus far, incurable. The cancer has resourcefulness equivalent to a cat with nine lives; its true regenerative force, though, may actually be infinite.
In a New York Times article, The Cancer Sleeper Cell, by Siddartha Mukherjee, the author postulates: “Chemotherapy unleashes a ruthless Darwinian battle in every tumor. A relapsed cancer is the ultimate survivor of that battle, the direct descendant of the fittest cell.”
Hence, my reluctance to begin a regimen of chemo; I wonder if doing so when my quality of life is high not only eliminates an option but also makes the cancer smarter. Like Curly, I do not want to enter a building from which I cannot escape.
I am a pragmatic optimist. I respect the ingenuity of life in all its forms, be it a life threatening cancer or a cleverly resourceful cat. I also admire the persistence of science. Right now, I’d say the brilliance of researchers is gaining on the lethality of MM. One of these days, perhaps in my lifetime, the cat, or rather, the cancer, will not come back.
Good Blood, Bad Blood 
Thank you for your wise, clear-sighted optimism. Beautifully written, again.
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John, while I am not sure I care for your comparison between cats and cancer (eeek!), I really do understand your reluctance to begin treatment.
How about going for a second, even third, opinion? When, in 2005, my (former) hematologist strongly suggested that I begin chemo, then go for an auto SCT, I followed my gut instinct, said no and got in touch with three other MM specialists, two in the U.S. (I contacted them by phone and e-mail…easy!), one in Italy (saw him in the flesh). They all told me the same thing: no Crab, no chemo…and certainly no SCT. I am not implying that your doctor is wrong, of course, but I do think it’s wise to ask an outsider, so to speak.
As Prof. Aggarwal says, don’t poke a sleeping tiger…
That’s my mantra…:-)
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Here, kitty kitty! As always, I love your analogies.
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John, beautifully written. First of all, Happy Holidays and Happy New Year. May you enjoy much health, happiness, and peace in 2011 and may I remember to wish the same for you next year and every year for another 30 or 40 years :-).
This is a very tough decision. I agree with Margaret on the other opinions. However, having said that, they are all just opinions. Like M said, then you need to go with your gut. Margaret also posted another article about placebo effect. Really that is all about the power of the mind.
So if your gut says you can stay in remission without maintenance, then live the life of good health and in peace, and even try to take something (e.g. a fresh green juice) daily. Believe that it is helping your body. That’s what I am doing (while still on REV) until I make my decision.
I did speak to my ND and I am trying to get personal contact with his MM patients to learn more, because I don’t want to ask him to speak about other patients. But he told me that 2 of his patients stopped REV for a winter when they went away, and for both it came back. I need more details of course. With one of them, they didn’t go back on REV and he kept it at bay with natural treatments (high dose vitamin C, miscletoe therapy, and more). With the other, they went back to REV without natural therapy but I were unable to get it back under control.
Anyhow, I will post more as I know it. I’m packing up the car to head down to Florida. It’s a 3 day drive – I’m staying away from planes to ensure I don’t have to breathe bad airplane air.
Happy Holidays – your new friend h
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Best wishes for wonderful holidays, John!
I am glad that Curly came back. I hope the same does not happen with cancer.
Everyone is different in the say they approach decisions in life.
I, personally, am mercilessly proactive when it comes to my disease. I am always the one studying the latest research and pushing my doctors in the direction I deem safest.
You should listen to yourself. No one else can tell you, you know deep inside what is right for you.
Either way, don’t second guess yourself. I wish you all the best this world has to offer.
Liliana
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Happy holidays, John.
Thanks for still another beautifully written, thoughtful piece. It’s a little saddening that you are having to make this decision about treatment, but maybe inevitable. You’ve certainly kept up on options and likelihoods.
Unlike cats, we humans go on our informed ideas as well as our guts. I wish we could always land on our feet, but we sometimes belly-flop.
From what I hear, Dr M is a fantastic doctor, so his opinions are not to be dismissed lightly. But I’ll pass on what the doctor from the Mayo Clinic said about a year ago in a talk in Portland, which one of your admirers already referenced: don’t treat numbers, treat the patient. Short of symptoms, just keep watching carefully. Of course, you might consider your pelvic and hip pains symptoms. (Why can things never be black and white?)
Sometimes a treatment plan is based on the obvious. In your case, it seems that it’s a roll of the dice. And I can second the notion that chemo does affect quality of life — my mood, my physical comfort level, and the continual reminder that I have a condition that is life-threatening.
On the other hand chemo makes me think that, since I need to, I am doing something positive in response to my life-threatening condition.
When my doctor suggested over the phone five years ago that I might have multiple myeloma, I crawled out of bed with my fractured vertebrae and, with much effort, lifted the Medical-Surgical Nursing tome from my shelf. It was written before I went to nursing school, which means before 1975. The section on MM in this huge book was about three inches long. It said MM was an incurable, untreatable disease. Prognosis was six months or less. The only recommendation from a nursing point of view was “Keep the patient comfortable.”
There’s still no right or wrong approach to treatment in a situation like yours, but isn’t it wonderful that we have options, that we have quandaries?
I have no doubt you will make the right decision for yourself.
I look forward to seeing you at support group and enjoying life in the coming year. I’m sure you will be enjoying your life and making our lives richer with your marvelous postings as well.
David
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Happy New Year, John,
As always, I’m appreciative of your posts (now made even better with falling snow!)
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Being Little Rock folks, where they follow up tandems with maintenance therapy, I think the prevailing view there is that it is easier to keep the MM down below detectable levels with maintenance after you have clobbered the living crap out of it. It also happens to be the latest trend in tumor cancers as well – maintenance therapy. I don’t like it, it is fraught with all sorts of potential unknowns down the line, and the newer trend is to keep you on some sort of maintenance well beyond the 3 year number now promoted at UAMS. Basically they will keep giving the drugs to you until you can’t tolerate them anymore. Its all theory, cancer maintenance therapies. They are doing it routinely now for breast cancers as well.
I will say that Dave has adjusted well to the regimen and we were happy when they stopped the Dex. But it definitely slows up the recovery process, i.e., fatigue and suppressed immune system.
I agree with everything everyone else has said, no wrong decision here.
The numbers out of Little Rock may interest you though, projected 15 yrs for low risk group. Good news.
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I just want to wish you well with whatever you decide to do.. Everything was tried with Hamada and all cases as you well know are so very different. I loved the times when H was not on chemotherapy and appeared quite well but his MM was sneaking away at his kidneys. So please watch carefully all your readings. Hamada was diagnosed so late when much damage was already done so that he really did do very well considering.
My best wishes wth whatever you decide to do and how wonderful Curly’s back even if a little worse for wear!
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