Sex and the Seriously Ill

Ed Note: This is a guest post written by B, a 55-yr-old man currently fighting a rare form of blood cancer.

Cancer is NOT sexy

There is an undeniably strong connection between sex and physical health. People with active sex lives tend to be healthier. If sex, – especially imaginative sex – is part of your life, you’re likely to put some effort into keeping yourself in good shape.

So what do you do when something interferes with that connection? We’ve all been there with one minor illness or another.  When you’re in the grips of a bad cold, or the flu, or even a strong hangover, sometimes the idea of sex just isn’t appealing.

So what happens when sex is an integral part of your life and you are struck with a serious illness?

In spring of 2011 I was in a great place, personally and professionally. My wife and I have had a healthy sex life since we’ve been together beginning in the late 90s. We’ve been into porn, various toys, vibrators and dildos, bondage and light to medium S & M.  We were on the verge of getting more adventurous and had agreed to start exploring various paths to more satisfaction when suddenly, everything changed.

A relatively perfunctory physical exam revealed my white count was abnormal.

I was initially diagnosed with Chronic Lymphocytic Leukemia (CLL) a very slow, indolent form of the disease with a high rate of remission. A lot of medical professionals I encountered said if I were to be diagnosed with cancer, this would be the best one to have. In addition, I was relatively young (54), and none of my previous annual physicals had shown any indications of what is normally a slowly progressive disease.

I volunteered for a clinical trial, and on a single day gave up 19 vials of blood for some extensive testing.  As the results began to come in, it was obvious that I was in a bit deeper than previously thought.  The new diagnosis was Mantle Cell Lymphoma, a very aggressive form of the disease and likely not on anyone’s “first choice” list.

This called for a much more aggressive chemotherapy plan.

It’s a bit surreal when that word, “chemotherapy” is dropped into the conversation. Realistically, once you hear the word “cancer” you have to know the other word is coming, but it still carries a lot of force. Most of us have watched others go through the process. I had one friend with lung cancer who experienced one treatment, then declined future treatments.

I knew it was going to make you sick. Very sick. Twenty years ago, in many cases, it was only going to buy you time, not reverse the course of your illness. There really was no such thing as remission. If the cancer couldn’t be surgically removed, no amount of chemo was going to eliminate it unless perhaps it was enough to kill you as well.

There’s been a lot progress. Many more sophisticated drugs that specifically target certain cells have been developed, and can be delivered in lower amounts that are amazingly effective. Yet there remains a bit of “carpet bombing” mentality in that it’s better to receive too much than too little, side effects be damned.

We know the classic side effects. You lose your hair; it makes you sick, etc.  But there are other, stranger ones.  Symptoms of neuropathy, such as numbness in your extremities. Loss of memory and brain function (referred to as “chemo brain,” an excuse I still use). Unexplainable joint and muscle aches. My own personal theory is that doctors are not certain what will happen when they administer these drugs, but they are certain what will happen if they don’t.

Throughout the summer and fall I underwent three to four days of chemotherapy every three weeks. I wouldn’t say  was stoic, but I was put into a kind of “Twilight Zone” where I wasn’t nauseated to the point of throwing up all the time, but I was nauseated to the point of not wanting to eat. Some of these drugs have bizarre effects on your sense of taste. It’s not that you can’t taste at all (that might have been a blessing), it’s that certain foods that may have tasted very good to you now are very disturbing and nauseating. The same thing applied to my energy level. I wasn’t tired, at least until I attempted to actually do something. Mowing the lawn, which normally takes all of about twenty minutes, would put me away for the rest of the day. I’m an avid motorcyclist, but let that go because I did not trust myself not to get overwhelmed by fatigue.

And this condition all but killed my sex drive.

My sexual relationship with my wife went from several times a week to perhaps one or two occasions on the third week when I was just getting a bit of strength back before the next week of treatment.

In addition, my interest in other women changed. I’m always speculating on the sex lives of women I’m around. Strangers on an elevator, people I have business and social relationships with, the cash register girl. I still had that curiosity, and indeed was encountering a lot of young women in the form of nurses, but the part of speculation that centered around fantasizing me personally discovering what pushed their buttons went dormant.

Looking back, I was coming from a very bizarre place. I couldn’t describe it as sick, more like my batteries were always low, giving me just enough energy to do the absolute minimum. There was also a psychological component that perhaps was not as strong as full-out depression, but left me with a profound sense of ennui.

This, however, was only the prelude. The good news was, I was in a sort of remission and considered healthy enough to undergo an autologous stem cell transplant. The bad news was, compared with the effects of what I was about to go through, what I had previously experienced was a walk on the beach.

Bone marrow transplants have been around for a while now as a treatment for various blood cancers. Undergoing this process replaces your previously compromised immune system.  The main problem is finding a compatible donor to avoid any problems with rejection. Autologous stem cell transplants harvest your own cells (via a process termed pheresis) but only after any trace of the cancer has been obliterated from these cells which requires a solid week of 24-hour chemotherapy. This was the first hurdle.

I won’t try to describe that week, except to say it was pretty miserable. By this time I had an external port with three attachments installed protruding from my chest and was tethered to an IV bag or bags constantly. Also, by the time you’re done, you have no ability to fight infection. I spent a week in the hospital, then a week out, and then suffered an e coli infection from within my own body (the chemo drugs can create fissures in your intestine which can cause a self infection). So I returned for another week in the hospital.

I had a two-week hospital-free period before I returned for the last round, a three-week period that once again began with the bombardment of my body for seven days before my stem cells were returned. Again, suffice it to say I felt profoundly weak and miserable, but I am one of the fortunate ones in that this treatment was available to me.

I began 2012 with yet another brief hospitalization (after contracting C-Diff, an infection that I have been unofficially told can be found on nearly every surface of a hospital.  Yikes!).

Words cannot describe how weak and beat up I felt for the first month or so back home. The slightest activity wore me out, and most nights I could not stay up past eight thirty or so.

Sex wasn’t just on a back burner – it was off of the stove and in the freezer.

It probably took about two or three weeks before my wife and I had what could be described as sex.  My sex drive recovered much like it had been injured. First it reappeared in my mind and imagination.  Then physically, but more on the tame side. Finally, we resumed some of our more creative activities. I have to express gratitude to my wife, who hung in there with self-pleasuring as her only outlet for a few months. It had to be tough.

I would say at this time I’m almost, but not quite, back to normal. I’ve learned a few things during my cancer journey.

As most men know (especially as we get older) sometimes the spirit is willing but the flesh is weak. This was not my first experience with erectile dysfunction, but early on, wanting to fuck so badly, deliberately setting aside time to really go at it, then being letdown by lack of functioning was an enormous disappointment. I’ve learned to let it happen.

Also, as you may already know from what I hope is your healthy sex life, the more you do it, the more you can. We’re back up to at least three or four times a week, but not yet at our pre-illness level. However, we’re working on it.

It’s kind of a two-way street. Desire for sex can motivate you to regain your health, and the benefits of a healthy sex life can really help your advance in the healing process.

Above all, don’t take your health for granted.  Get it on when you can, as often as possible. Trust me, you’ll thank me for this advice later.