I am writing today under the old adage of “misery loves company.” I don’t want you to be mis­er­a­ble, but I just need to share with some­body who understands.

For those of you currently enduring severe myeloma symp­toms or treat­ment side effects, please for­give me for sounding like a spoiled brat. How­ever, there are many of us who ex­per­i­ence myeloma like a dull constant head­ache, rather than a migraine. And that constant ache is a hassle (al­though I’m sure those of you with a migraine would trade for it in a minute to get rid of the migraine).

After three years of rela­tive­ly pain­less (both figuratively and literally) treat­ment, I am hitting a rough patch with this cursed disease. Nothing like what many of you go through on a daily basis, but dif­fi­cult none­the­less.

I find it very frustrating that, just when I start feeling like I have the “new normal” under control, I wake up feel­ing like I’m hitting a major bump in the road. I guess that’s just the nature of what we all are going through. Living with myeloma is like a marathon roller coaster ride.

Thankfully, my disease has never been very debilitating. I am one of the lucky ones who happened upon the diagnosis through a blood test while searching for the cause of a regularly occurring bout of colitis. It turns out, by the way, that colitis can indeed be caused by myeloma, due to the lack of immunoglobulin A (IgA) that my disease causes. This immunoglobulin helps protect soft wet tissues in our body, such as our mouth, stom­ach, and intestines. Since I have almost no IgA in my body, I am susceptible to such colon irritations.

Other than my colitis and a little more fatigue than is normal, I have had no other myeloma symptoms; no broken bones, no lesions, and thankfully no spinal problems. I often have had to remind myself why I am undergoing treatment at all. Unfortunately, the bone marrow biopsies repeatedly confirm that this is nec­es­sary.

Indeed, the treatment has been far worse than the disease in my case. After first playing watch and wait for a year following my diagnosis, I endured 10 months of induction therapy with Velcade ^[1] (bortezomib), Revlimid ^[2] (lenalidomide), and dexamethasone ^[3] (Decadron). I then enjoyed an almost six month “treatment vacation” to get my stem cells ready for harvest in preparation for a future stem cell transplant. After a successful harvest, I went to maintenance therapy with Revlimid and methylprednisolone (a different steroid). I am still on this ther­a­py to this day.

While the treatment cocktail has been less than enjoyable, I would say I generally have tolerated it quite well. While on the drugs, I have been mostly able to maintain an active lifestyle and have been able to continue, at least in a reduced capacity, with my work. What nobody other than my family gets to see, though, is the ex­cep­tion to the word “mostly.”

As with most folks, every cycle for me has its ups and downs. The week off of Revlimid (and, for the first 10 months, Velcade) is usually the best. We all know the joy of dexamethasone. Although methylprednisolone is easier for me to handle, it still leaves me unpredictably moody. I try to plan for the times I am going to feel bad, but they don’t always come when they are “supposed” to.

After a year on maintenance therapy, I started getting exceptionally fatigued during the last days of the Revlimid cycle. I was taking a one- to three-hour nap almost every afternoon! I also developed a heart arrhythmia that was causing me to be short of breath after a couple of months of maintenance – again at the end of the treatment cycle.

My doctor took me off treatment right away, and the arrhythmia stopped within about five days. But it certainly slowed me down for a while. After that, I was given a six-week holiday from drugs, and I felt awesome! After over a year on maintenance, it was great to feel normal again. I forgot what it felt like to not be on drugs. Of course, my blood work the next month wasn’t very good – got to keep “mowing the grass” with that Revlimid – so I had to start treatment again.

This time, my body recovered some equilibrium, and I tolerated the drugs much better than before. I felt so good that I was doing lots of work around the house (my wife was thrilled!), fishing, hunting, and playing golf.

What a great break from being sick!

As we all know, the good times will always come to an end. And I was no exception.

During this latest treatment cycle, I have not only rediscovered my old friend fatigue, but I am also enjoying diarrhea severe enough to cause me to stop solid food altogether. Whether this is due to the myeloma-inspired colitis or a Revlimid side effect, I am not sure. No matter the cause, I’m pretty miserable.

It’s interesting how quickly we humans take the good times for granted. We quickly forget about the bad times and expect the good times to roll forever. I have read that this is a survival mechanism we have adopted to cope with life’s hard knocks. I can see how valuable that is.

I get by with the knowledge that I will have more good times ahead. I try hard to use the down time pro­duc­tive­ly, but it seems like such a struggle sometimes.

For now I will just endure.

Aloha and carpe diem!