I am gratified by the excellent feedback I received from the first edition of this blog. There are so many thoughts I want to follow up on with future discussions. Today, I’m going to continue with my own story as a further illustration of what we all have in common.

The first order of business after my diagnosis was to determine the current involvement of the disease and to get a sense of my baseline symptoms. Like most people with a full-time job and kids at home, I laughed when I was asked if I was experiencing fatigue. Yes, I said, “I, along with my wife and my dog are all fatigued by my children.” (We have two boys, and it’s “Wrestle Mania” every night). But upon reflection, even initially I was more tired than usual and occasionally having poor sleep with sweating at night. I thought, “Surely there is a more discrete symptom complex that can be used to track the progression of this disease?” After all, a major portion of the decision to pursue treatment is tied to a “progression of symptoms.” And yet the symptoms are somewhat nebulous.

I was advised to stop taking calls overnight (which I had been doing about 6 to 7 times per month) and to avoid days longer than 12 hours (another 8 to 10 days per month). I approached my anesthesiologist colleagues with my diagnosis, and they were immediately and incredibly supportive. When they asked how I was feeling, all I could come up with was that I was fatigued.

How do you explain to someone that you have fatigue? I grew up in a self-reliant household where my dad chopped our own wood, as did I when I got old enough. We upper Midwesterners are not a “fatigued” people. We clear our woods, grow our food and build our own shelter. Fatigue = Slacker where I come from.

And what fatigue! We are all familiar with the term ”second wind,” where you can find a reservoir of energy to dig into when you’ve got to get things done. I was dismayed to find that my second wind was utterly absent, particularly by six months into my course. Naps became essential for basic functioning, at first just 30 minutes and then longer. How does one explain to well-meaning friends how disabling that can be?

Somewhere in the first four months began the night sweats. As a doctor, I thought “night sweats” meant “sweating at night.” I learned that we are talking about full-on drenching sweats with soaking clothes, soaking sheets and sometimes a wet comforter. This means getting out of bed, remaking the bed, changing clothing and then trying to get back to sleep in the dark, knowing that you have been awakened because of your (progressive) disease. My wife could sleep through all this, although my dog was awake and confused but trying to be helpful, as always.

Like many patients with 11q deletion, I had prominent lymph nodes, particularly under my jaw and around my neck. These lumps and bumps would go up and down, and I found myself subconsciously palpating them. Fevers rarely affected me, although many of my new friends at the clinic have very prominent fevers. And I began to lose weight.

All gratuitous complaining aside, the symptom complex for CLL is highly disruptive and can be difficult to express to others. In my case, it made me feel like I was not living up to my responsibilities, which was completely dismaying.

My interest here is to engage others in a discussion of their symptoms and what they have found to be most troubling. I’d like to know how this affected their self-perception. Fear not, I don’t want to be too much of a downer. I think we can then also share how we have moved past that distress and continued on with our lives. I welcome your contributions. What symptoms have you experienced, and have you found a way to manage them? Tell me below in the comments section. Be well!

Sincerely,

Randall Goskowicz, MD, CLL Patient

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