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Manhattan Tales: Side Effects, Good And Bad

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Published: Oct 24, 2013 2:18 pm

It’s been nearly four years since I was diagnosed with multiple myeloma, and I am only now experiencing my first significant period without chemo­ther­a­py.

Six weeks ago I came down with a bout of pneumonia, and my medical team decided that I should take a break from two medicines that I had been taking and that interfered with my white and red blood cell pro­duc­tion: Pomalyst (poma­lido­mide, Imnovid) and cyclophosphamide (Cy­tox­an).

Although I continue to take dexamethasone (Decadron) twice a week, the break from Pomalyst and cyclophosphamide should allow my blood cell levels to recover before my next regimen begins in Novem­ber.

These and the other medicines I've been treated with in the past have kept multiple myeloma more or less at bay for me. While I have never experienced a complete remission, I have had some periods of a “very good partial remission.”

As a result of my current unexpected break from chemotherapy and its many side effects, I began to think about all the various impacts I’ve experienced from the medicines I’ve been using over the past four years, and the various changes they have made in my daily life.

But before I begin my checklist of side effects, I do want to note on this crisp fall day in Manhattan that, during this break from chemotherapy, I feel terrific! Other than catching a couple of fingertips in a door on Sunday, when I was still groggy after a very deep afternoon nap, I do feel exceptionally well.

Prior to stopping my previous treatment regimen, I hadn’t realized quite how oppressive these regimens were to my mind and my body.

Though I still lack a lot of sensation in my hands and feet, the intensity of the peripheral neuropathy’s gen­er­al burning sensation on my skin is now much lessened.

I am thinking more clearly, and my sense of balance has improved dramatically – I actually have gotten on a bicycle several times and taken urban rides in the fall weather.

I also have gone on lengthy walks and museum visits with my wife, who was able to schedule a two-week vacation from her job during this brief respite from chemo and the required weekly (and sometimes twice weekly) visits to the hospital for blood tests and other appointments.

The major side effects in my litany of physical ailments are included in many myeloma patients’ lists: pe­riph­eral neuropathy from the very beginning from Velcade (bortezomib) and Revlimid (lenalidomide) and, later, Pomalyst; fatigue (though I did come to love my afternoon naps); lowered pulmonary function (but not so dramatic that I had go give up activities – I just had to slow down).

Although the members of my family claim that they did not notice any change in my analytical skills, I def­i­nite­ly felt many periods of confusion and disorganization. My ability to remember names was sub­stan­tial­ly reduced, but has improved during the past few weeks, so I was comforted to discover that it is not just age related.

One of the more shocking experiences I had in terms of memory loss happened two months ago, while I was in the midst of my “chemo brain” phase.

I picked up a relatively new book in the “to be read” section of our bookshelf, and found that I had read it before – I had taken extensive notes in it and underlined many sections. My complete lack of remembering the book was very distressing, but it was a wonderful read the second time through.

There are other serious drug- and disease-related side effects I experienced. The most serious one is pneu­monia, which I’ve had four times, including twice this past winter. It possibly occurred as a side effect of treat­ment when I was on a clinical trial of a monoclonal antibody. I had another lung infection a few weeks ago, when my white blood cell counts were very low. I know that my lungs are my particular nemesis.

The list of impacts and changes in my life goes on, though I seem to have put some of them behind me, if perhaps only temporarily.

For example, the loss and subsequent recovery of my physical strength during and after my stem cell trans­plant took many months, though my ability to forget the pain and discomfort I experienced in the hos­pi­tal has proved useful in getting through it.

I’ve experienced a lot of trouble with sleeping; I’ve gone through periods of very intense cramping in my hands feet; and when I was on much higher doses of dexamethasone than I am on now, I had some periods of intense aggression and anger.

One thing I have learned over time is to never drink caffeinated beverages on days that I take any dexa­metha­sone! The combination of dex and caffeine makes me hyperactive and edgy, and the effects don’t seem to lessen as the day progresses as they normally do with just caffeine.

I need to point out, though, that not all of the side effects of either the medicines or even the disease have been entirely negative.

First, even though I never contemplated retirement at age 63 (my father stopped teaching law at age 80), I have found that writing and extensive reading have somewhat compensated for the sense of self-worth – I sometimes refer to it as the ego satisfaction – that solving analytical problems as a lawyer provided me.

I really enjoyed working on municipal government’s legal issues, which I did both directly as a government lawyer for a little over half of my career, and indirectly when I was in private practice.  I also certainly miss the social interactions of work and the appreciation that I got from my colleagues.

But retirement has allowed me to read many more books on history as well as on science and novels that my work schedule never permitted.

In addition, retirement allowed me to develop a passion for swimming -- a time-consuming physical activity, which takes me almost two hours to complete including the travel time to and from the pool. As I have written in earlier articles for The Beacon, swimming has proved a wonderful therapy for my neuropathy and my over­all sense of well-being.

Third, my profound sense of gratitude and fascination for medical science, which seems to be keeping one step ahead of my version of this disease, has inspired me to learn some rudimentary biology (my only bi­ol­o­gy course was over 60 years ago when I was in the 9th grade).

While I certainly have not mastered the mechanisms of angiogenesis inhibitors, immunomodulators, pro­tea­some inhibitors, and monoclonal antibodies, which are the exciting new treatments in the current war on this disease, I no longer stumble when pronouncing the words.

I have learned to distinguish the various types of treatments that I have been on, I read with anticipation the latest advances in treatment of this particular variety of cancer, and I remain in awe of what the scientists are doing in their laboratories.

My treatments have also caused me to make regular – frequently weekly -- visits to the Mt. Sinai Medical Center in upper Manhattan. The subway takes me to the northern edge of Central Park, where I can take any of several paths through the park to the medical center, which is located nearby. This area of the park is a naturalist’s haven – it is significantly less crowded than the southern end of the park.

I have learned to identify many trees and species of birds that live and migrate through the park. Ailing with a life-threatening disease, with good days along with very bad ones, has developed my awareness of natural beauty.

Last year my wife dropped one of her two three-quarter time jobs. She too has learned a great deal about multiple myeloma and is coping with a husband who is chronically ailing.

I am particularly lucky to have her, a pediatrician, as my own personal health care advocate, as well as someone who refuses to let me slow down too much. We have been fortunate to have been able to take a trip abroad each year since my retire­ment, and now that it is autumn, we have begun our fall walks to enjoy the changing of the leaves.

Finally, my heightened sense of my own mortality is not something that I have found depressing; rather, I have found it to be stimulating topic for my inner monologue.

So while myeloma is certainly not a blessing, it has provided a path to some enlightenment and to new interests.

Though it is difficult to ignore the fact that I have the disease, this period of relief from the most serious side effects has provided a happy opportunity for distraction from what has become a far too central focus of my life.

Perhaps I can park the bad moments in that corner of my mind where the forgotten names, forgotten books, and forgotten memories reside.

Nevertheless, the challenge of the next treatment regimen does lie before me, and I do await it with some anxiety.

Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of the columns he has written here.

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .

Photo of Stephen Kramer, monthly columnist at The Myeloma Beacon.
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8 Comments »

  • Michael Lapides said:

    Stephen,

    Another worthy Beacon column and I thank you for writing it.

    I was particularly interested in your note about decreased pulmonary function with Pomalyst. I'm on a carfilzomib [Kyprolis] and Pomalyst regimen and have reduced cardiac function leading to the same symptoms you reported, fatigue and shortness of breath. Have you seen any change in these symptoms since your treatment vacation began.

    I've also had several post treatment (as in day o treatment) fevers, the first of which resulted in a hospitalization. The second bout saw my fever get to 101, past the 100.5 level where my doctor expects me to report to the ER. This time I stayed home and kept quiet and, fortunately, my fever dropped and I spared myself the indignity of another ER visit.

    I've been a lap swimmer for 30 years but, sadly, I haven't been strong enough to get in the pool since June. I am getting to the gym and though my 'workout' comes no where near what I could have done in previous years, I'm thrilled to get out of the house, and get some air.

    While no ones myeloma experience is the same as that of anyone else, it's can be reassuring to read of another's journey through the land of the myelomics.

  • Snip said:

    Thanks for writing that, Stephen. Although our experiences with MM sound quite different, it would appear the end results are much the same: I too am retired and somewhat limited post-diagnosis, and like you am very much in a state of appreciation for what is and what I have and can experience. Life really and truly is precious.

    As an aside: by-and-large I try very hard to ignore my MM nowadays, and can get away with it as I am asymptomatic and have been for quite a few months now. But I cannot stay away from folks like you and your fellow Beacon writers with your eloquence and insight. I read every post, and am grateful that there is this resource available to us. Thanks, all!

  • David Finkelstein said:

    Great column. Great writing.
    Thanks!
    David

  • Jan Stafl said:

    Thank you Stephen for a thoughtful reflection. I was particularly struck by the short paragraph near the end, that your sense of mortality is not depressing, rather that it is a stimulus for your inner monologue. That awareness of our inevitable death is a topic rarely breached by Beacon columnists. Yet it is an unspoken reality for all of us.

    This week I had the privilege of taking part in a local "Death Cafe", which has become an international movement. It offers a menu of topics about death and dying to consider in small group dialogue, and attracts those who are open and willing to discuss these taboo topics. Tea and cake are served around tables of 5-6 participants.

    Rather than being a depressing topic, I found that my group of five strangers was able to reach remarkable depths of inner thoughts and feelings, and express them while being empathically listened to. So much compassion and unifying experiences were shared! After 90 minutes that just flew by, all six small groups testified about how deep and invigorating the experience was. I highly recommend it.

    Personally my challenge of myeloma has led to a spiritual journey where I have completely lost any fear of death. Not that I want it to come soon, but whenever it comes, I am ready. No one knows what happens after death, but I am convinced that our present reality is not all there is. In fact, I feel that our transformation at death is the greatest adventure that awaits us all! The hardest thing will be the loss felt by loved ones left behind, but the closeness, gratitude and love that has been enhanced with my wife and family since my diagnosis is worth it.
    Best wishes to you and all our fellow travelers! May we all have the strength and humility to face the inevitable. Jan

  • Steve said:

    "No one knows what happens after death, but I am convinced that our present reality is not all there is."

    Hey Jan,

    Your post intrigued. I'm wondering if you might share with us, or just with me privately if you'd prefer, how you've come to be "convinced"?

    Personally, I'm not convinced....hopeful....but not convinced. Of course, maybe I'm missing something? Perhaps you might help me recognize what that might be? :)

    sacochran@embarqmail.com

  • Jan Stafl said:

    Steve, I will gladly send you an email with an attempt at the description of my process. For the group, I have to say that in my experience, you cannot get there just with an intellectual exercise. It requires a deep personal experience, and often persistence, which leads to a true knowing, not just blind faith. It completely changes your life! Namasté (you all can look up the definition) for all beings is the result.

  • Stephen Kramer (author) said:

    Michael -- thanks for your comments. My decreased pulmonary function, while measurable, primarily slowed me down rather than precluding any activities -- luckily over the summer, prime swimming season, it did not preclude swimming or walking (though walking was limited by neuropathy in my feet). Over the last six weeks, when I have been off Pomalyst, not only did the neuropathy abate, I am pretty certain that my breath has come back pretty quickly, though it hasn't been measured. I swam a mile yesterday in the pool at a pretty good clip, and I hadn't been swimming regularly for a couple of months. So, if it's any comfort, some of side effects may well prove reversible.

  • Matt said:

    Stephen, this is so great. So much of it rings so true, and you said it perfectly. I am so darn slow now when I walk, swim or bike.

    Thanks for writing this! Matt