Manhattan Tales: Aches And Pains

Three months have passed since I left the hospital after my stem cell transplant. 

I am in a quiet and watchful time period, regrouping my energy and my brain cells for the next phase of my life. 

I have been regularly delighted by being able to return to “normal” activities such as shaving and an occasional visit to the barber. While my barber doesn’t have much work to do on my head, he is a phenomenally upbeat guy and entertains me with details of his youth, such as harvesting olives in Sicily. And he offers all his customers a first-rate espresso, and caffeine is definitely a mood-enhancing drug!

As predicted, the transplant and its traumas are fading from my memory. 

My stamina pretty much returned within two months of leaving the hospital. For the first four weeks, I walked every day and by the end of a month, I could walk the three miles to Battery Park and back (with a serious rest at the halfway mark). A month later, I had returned to the swimming pool and slowly made my way from one end of the pool to the other. I am trying to increase the length of the swims and my speeds.

Notwithstanding these positive developments, a big issue I have had to face since my transplant is pain. 

Before the transplant, my body was reasonably cooperative both with the chemotherapy and the aging process (I am 64 years old). The chemo did give me peripheral neuropathy and occasional cramps in my hands and feet, but the discomfort was bearable.

Post transplant, my body has been considerably more rebellious. For example, in the midst of mundane activities such as reading a book or eating dinner, a mysterious needle starts jabbing me in my left shoulder. One of my sisters attributes this to an evil little jinn. My doctor attributes it to an aftereffect of Revlimid (lenalidomide). 

In addition, I have experienced intermittent but intense bone pain in my shins and my forearms. The pains appear, and I am near tears – and then suddenly, the pains abate and occasionally disappear altogether. Similar waxing and waning occurs with the peripheral neuropathy. 

For these and other various ailments, I was counseled to increase my doses of Neurontin (gabapentin). Occasionally, I’d also sneak in a couple of Advils (ibuprofen). I have steadfastly refused to ask for “something stronger,” such as those all-too-wonderful meds they gave me in the hospital. Although I don’t think of myself as having an addictive personality, I liked those medicines far too much. I intend to hold off asking for any more as long as possible.

For now, I have found three basic ways to cope: distractions, exercise, and friendships.   

Distractions: One of the most amazing phenomenons I have encountered is that when my mind is actively engaged in an activity, it somehow compartmentalizes and walls off the pain I am otherwise experiencing. I will look up from a good book or movie and realize that while my hands or legs still hurt, I wasn’t experiencing the pain while my mind was elsewhere. 

Exercise: As I have mentioned before, swimming is as close to a meditative activity as perhaps I will come. While I do not think that the swimming generates the peace that others achieve in meditation, the rhythm that swimming provides in breathing, performing my arm and kick stroke, and listening to my exhalations and the lapping water are very restful. Within a minute or two, the pains fade away. 

Much has been written about the “endorphin” effects of exercise. More recently, I also read that exercise results in better pain tolerance.  

My experience in the pool is consistent with these theories. After a half-hour of steady swimming, regardless of how fast or slowly I’m going, I have shoved my pain away to the corner of my mind. Even better, I often feel little pain for a few hours after leaving the pool. Swimming is a time-consuming activity, but other than flossing it’s the best investment in time I make each day.

Friendship: I do want to mention the role of family and friends in helping to deal with pain. I very much appreciate having a few very close friends and family members with whom I can be completely honest. 

Nevertheless, I don’t feel very comfortable talking about pain with anybody other than healthcare professionals. Certainly, few people feel comfortable listening to me talk about pain either. 

When asked how I am feeling, I smile and respond with “GREAT!” rather than recite my litany of complaints. I prefer to make conversation about the bicyclists and joggers on steroids who won’t share the road than to complain about my aches and pains or to recount the tale of my latest bone marrow biopsy. 

If a friend presses for details, I give them the details – but I wait to be asked directly.  

For me at least, explaining what I have been through doesn’t make the pains go away or ameliorate them. The distractions or a good story that someone might relate to me in a conversation are far better medicine. 

Meanwhile, thanks for listening to my litany. And the bone marrow biopsy wasn’t really that bad!