Most of us with myeloma have probably experienced those days when some drug side effect has ruined an otherwise perfectly good spring day, or summer afternoon.

In the first year of my post-stem cell transplant days, I managed to find myself in the hospital on Memorial Day, July 4, and Labor Day weekends.  How exciting.  On one of those stays, I clearly recall sitting and reading a book by the room’s open window, listening to revelers late in the night having a grand old time as their sounds carried the distance from downtown Saratoga Springs to the hospital on the edge of town.

This past winter, my weak immune system was doing its usual pathetic job of fending off respiratory infections, and for about six weeks I was laid low, particularly at one point when it was touch-and-go whether I should go to the hospital for inpatient care.  My local oncologist was clearly leaning toward me being admitted, but since I wasn’t showing a fever of any significance, he left the decision up to me.  So, I said, “I’m going home.”

The thing is, it was Friday and I’ve learned that when hospitals get you in their clutches for a weekend for something like this, you’re lucky if you see the light of day again before Tuesday morning.  Not to mention that hospitals in mid-February are particularly full of nasty germs.  Who needs that?

The drug of choice for me for infections has generally been Levaquin (levofloxacin).  I’d forgotten that it carries what they call a “black box warning” on its FDA label.  It can sometimes cause ruptured tendons, and no one really knows why it can have that effect.

So, during this course of Levaquin therapy, guess what – my Achilles tendon on my left foot got painful and all swollen.  Fortunately, I was just finishing up with the drug and stopped after one more dose, although I should have stopped immediately.  An article I read a few days later said that swelling and pain often precede a rupture.

Achilles tendon ruptures are no joke.  I vividly recall to this day watching Sonny Jurgensen, quarterbacking the Washington Redskins late in his career in 1973, simply turning and starting to walk off the field after a rather non-descript passing play.  He seemed to stumble a bit, and then fell to the ground.  An Achilles tendon had ruptured. It’s usually a year’s worth of recovery.

Did you know that Revlimid (lenalidomide) can cause muscle cramps?  I’m sure some of you have had the experience.

Mine come in the middle of the night, disturbing an otherwise peaceful sleep.  After a year of Revlimid / dexamethasone (Decadron) therapy, the cramps aren’t nearly as bad as they were initially.  But mild cramps?  They still wake me up.  The other night I watched this rolling cramp do bizarre things to the muscles in my left leg’s calf, including sucking everything in so that I had this huge indent in my leg at one point.

I thought to myself, “Holy something, maybe I don’t have cramps at all.  Maybe it’s an alien from one of those Sigourney Weaver movies.”

I also get a daytime cramp in my hands, mostly the left one.  These are quite amusing in their own way.  For no particular reason, my thumb, for example, decides to have a close relationship with the pointer finger and attaches itself to it.  Immovably.  The only thing I can do is pry them apart, and that can be with great difficulty sometimes, only to see ol’ Thumbkin snap right back next to Pointer.  Pointer sometimes does this to the middle finger, with the same effects.

Now, we all know what dex does, don’t we?

Yes, that’s it – insomnia.

For all the dex that I’ve pumped into my body at various times, I’ve pretty much dealt with it by using the time productively – working or writing, catching up on my reading or watching something on the TV, usually some primetime show that I recorded on the DVR because I fell asleep during that endless mid-program commercial break.  I started writing this at 3:30 a.m., for example.

But I also know that for some people, these sleepless nights are more than an annoyance to them.  They simply can’t stand them.  So they take Ambien or some other sleeping aid.

That gave me a great idea one summer evening, on a day when I’d taken my dex dose.  The lawn needed mowing, and I said to my wife Linda that I would mow the lawn around 5 a.m. after the sun came up.  As usual when I have these brilliant insights, she gave me that what-are-you-freaking-out-of-your-mind look.

I said something like, “Hey, the neighbors aren’t going to complain to me, I’m the woeful cancer patient after all, but when they come bitchin’ to you (to paraphrase Billy Joel), just tell them, ‘Oh. Sorry.  He’s on Ambien.  He was sleepwalking.  He has no idea whatsoever that he did that.’”

I should tell you that I didn’t really mow the lawn at 5 o’clock in the morning.

Drug side effects aren’t much fun, though.  I’ve seen that “why me” look on some people’s faces when I talk to them about toxicity.

For me, side effects fall into two categories.  The ones that can be annoying, even extremely so, and those that pose a real threat to your life or quality of life.  Don’t be mistaken, there are side effects that put your life at considerable risk – infections in particular.  A lot of us with myeloma die from pneumonia.

I’m reminded of actor and myeloma patient Roy Scheider, probably best known for his role as the chief of police in Jaws, who died from an infection he got from a nasty cut suffered in his workshop.  Since that happened, I fanatically go after any break in my skin, especially those I get working outdoors.  Hydrogen peroxide, Bactine, and Neosporin – I take no chances.

Advanced neuropathy in extremities, where walking can become painfully impossible, is one of those things that can affect your quality of life, so you have to be particularly aware of what treatment drugs are doing to you in that regard.

For the rest, I think you need to do what you can to ease them, which sometimes means playing around with a dose reduction in your meds, and resigning yourself to just having to live with some side effects.  Dose reductions are a pretty common strategy.  One myeloma doctor recently told me that when your are on something long term, hardly anyone can continue to tolerate toxicity issues without a dosage change.

Our lives with myeloma are complicated, those great times of complete remission aside.

I’ve said before, however, that many of us find the disease the impetus for taking a breath and looking around and really appreciating, perhaps for the first time, the world around us, what it offers, and the things we have.

That’s a gift not everyone receives.