I have been struck lately at how clearly I am leading a double life.

In my “healthy life,” I am fun-loving, cheerful, outgoing, and almost always trying to grab the golden apple with both hands. I am able to combine work, fun, and family into a package that I’ve rarely ever been happier about.

In my “myeloma life,” I find myself standoffish, reserved, and looking for­ward to my next nap. I am usually a bit frumpy and grumpy and not very fun to be around. It is not somebody I enjoy being, so I usually try to stay a little more isolated.

It’s the bitter irony that is multiple myeloma that I have to learn to accept both Toms. When somebody who hadn’t seen me for a while recently asked me how I was doing, I had to tell him that I was amazed at how much more I am enjoying my life now that I probably have an upcoming ex­pira­tion date. I also told him that I was a bit ashamed that it took a diag­nosis of an incurable disease for me to find this enjoyment.

This joyful Tom almost immediately forgets the pain and discomfort of the unhealthy days and focuses on enjoying time with family and friends. I have been accused recently of burning the candle at both ends, to which I gladly admit full guilt. I am having so much fun when I’m this Tom that I have to do some things that are not fun once in while (work!) just to break up the fun monotony. What a problem!

The good times slow down considerably when I’m suffering the effects of my multiple myeloma treatment. I’ve been on maintenance therapy for about two and a half years now and the dividing line between the good and the bad times is becoming ever more clearly defined.

Like many of you, I am on maintenance therapy. In my case, the maintenance regimen includes Revlimid ^[1] (lenalidomide) and a steroid. I take the Revlimid for 21 days, followed by 7 days off. The steroid I take, methylprednisolone, is a low regular dose that I continuously take every other day with no week off. Again, as many of you can attest, the Revlimid dictates which Tom will be answering the door on any given morning. The steroid I take has no effects that I can notice anymore. I find it much more tolerable than dexamethasone.

I have become very predictable.

On days 1 to 7 of each treatment cycle, I am pretty much feeling my best. Having just come off a week of detox from the Revlimid, I almost always feel good. I end up doing the most during this week and try to schedule my life accordingly.

On days 8 to 15, I am still feeling pretty good, but the Revlimid is starting to make me feel a bit loopy. I can usually power through this feeling and get a lot done with a little more effort. I’ve noticed that I can feel the effects of the Revlimid after only a couple of doses, but the chemo brain remains tolerable for quite a while.

On days 16 to 21, I am getting a bit overwhelmed. My fatigue is becoming so pronounced that I am easily taking a nap in the middle of the day, something I have never been able to do in the past. I am also usually feeling the gastrointestinal effects the most during this time. Keeping a toilet and a large jar of antacids handy is usually a necessity – especially the toilet. I find it very hard to keep my focus during this time. Occasionally my mind will just drift off in mid-sentence, which I find a bit unnerving. It is not my typical behavior. Of course, all of these other symptoms are what contributes to the grumpiness. Being grumpy probably bothers me the most, as it is often taken out on my poor family.

Most people rarely see this bad side of me. When I have to work during this time, I screw a smile on my face and try not to act too stupid. I am usually able to control the diarrhea with Imodium (loperamide) in order to get through long drives and meetings. If I’m not working, I don’t do a whole lot of other activities. I just don’t feel well enough to try and enjoy myself very much. When I do see friends during my bad days, I try to hide my discomfort as best I can. No reason for everybody to feel bad.

My week off (days 22 to 28 of each treatment cycle) is really the most telling of the tale of two Toms (that’s a tongue twister!). The first two or three days of my off week, I am still feeling my worst and would prefer to be left alone to sleep it off. By day three or four, though, I am rapidly coming out of the fog and really looking forward to feeling good. I find the end of this week is the best time for a party, dinner with family or friends, or a more complicated project at work. I am always amazed at the turnaround my body makes in just a few days’ time.

You can almost draw a line on the calendar dividing the bad from the good.

What I find the most fascinating is my brain’s ability to forget the recent difficulties and focus on the positives. I can hardly remember the bad days at all, but the fun times are in vivid detail!

I sure am glad the good days still outnumber the bad. I know this won’t always be true, so for now at least I’ve got a candle to light – twice.

Aloha and carpe diem.