After my last post about “the gift of cancer” I must say that CLL has felt much less like a gift this month.
Joining the ranks of those with “a diagnosis” has given me a some insight into what our patients face all the time.
Recently, I received my second dose of humility. I capped off a truly exhausting week in the hospital with a routine lab follow-up.
The last day of my 85-hour week I had my CBC checked, and my platelets dropped from the 100s to the 30s.
My first reaction was denial. Lab error.
Unfortunately, they dropped further the next day and I realized that the little red bumps on my legs weren’t some skin reaction, but petechiae. Bummer. Turns out that in addition to the 2% of people diagnosed with CLL under age 40, I also joined the 20% who develop idiopathic thrombocytopenic purpura (ITP).
The treatment of choice for ITP is prednisone 1mg/kg. So after a visit with my oncologist, I started 80mg of prednisone.
I realized with more than a little chagrin that I have a double standard about therapeutics. I was surprised at how much I despise being on prednisone.
I had never taken it before, and I would guess that I prescribe it every week, if not every day, that I work in the hospital. I have always felt that prednisone is fine for my patients to take.
Steroids work to help clear up that asthma flare, quickly improve that gout pain, or even help with a burst of energy in the last days or weeks of life for a terminal patient.
But for me? No thank you.
I prefer to be a minimalist as far as medications are concerned. Instead of the benefits of the prednisone, I was thinking about the patients I have seen with infections, steroid-related myopathy, psychosis, disrupted sleep, and a host of other problems.
I prefer to handle my CLL with diet and lifestyle modifications. Better sleep hygiene. Better nutrition. More mindfulness in daily life.
For the past couple of months, things had been looking pretty good, with stable counts up until recently. Having to actually start a medication to treat a complication of my CLL was a shock.
I was disappointed in my body for letting me down, and I was disappointed in myself for letting my body down by overworking, under-sleeping, and overstressing.
The first couple of days on the prednisone felt pretty good. In fact, they felt really good. It was like downing a couple of cups of strong coffee. I was buzzing. Granted, it was getting harder to get to sleep at night. Unfortunately, the buzz didn’t last and has been replaced by the afternoon drag.
As I have been able (thankfully) to start tapering the dose, I find myself feeling more sluggish for a day or two on the lower dose. Come on, adrenal glands – let’s adapt a bit more quickly! Other than that, I have actually felt pretty good.
Some of the other side effects, like irritability or fatigue can be hard to sort out from life in general.
My wife, in an attempt to prepare my 5 and 8 year-olds, told them that Dad might be more grumpy than usual from a medicine he is taking. The sentiment was nice, but it backfired, as evidenced by this conversation with my five year-old.
“Dad, are you grumpy now?”
“How about now?”
“NO!! STOP ASKING!!”
Now Dad is grumpy.
There is also a real sense of vulnerability here. How soon will this clear up? What next if it doesn’t? The uncertainty is frustrating. I want to be able to predict the next weeks and months. I don’t want to have to miss work, or feel that I can’t pull my weight as part of a busy (but very supportive) group, or try to hand off duties for the course I co-direct.
Uncertainty also surrounds what my limitations should be. We doctors aren’t very good at specifics that impact our patients lives.
Okay – I get that I can bleed more easily, and that I should avoid “unnecessary increases in intracranial pressure.”
I backed off from lifting weights and running, but still try to be fairly active. Surgeons or radiologists will give us clear cutoffs for platelets or INR they require for a surgical procedure, but it’s an altogether different beast trying to figure out at what point I can reintroduce normalcy in my own life.
At what platelet level can I start exercising more vigorously again? What about wrestling with the kids? Pillow fights? Jumping on a trampoline? I didn’t find anything in the literature about those cutoffs.
I am happy to report that my platelets have ventured back to a better range, and I am slowly tapering the prednisone. I am eager to get off of it, though I don’t know for how long. I suspect it is a medication with which I will need to make my peace – I am trying.
I also realize that I need to continue the work of acceptance and balance in life, striving to control the things I can control, like stress, sleep, nutrition, and exercise. It is also a reminder to be grateful for all the good things that I have.
Unfortunately, acceptance and balance are easier to talk or write about than to operationalize. Should have seen that coming.
At any rate – on with the journey.
Brett Hendel-Paterson is a med/peds and palliative care hospitalist at HealthPartners Regions Hospital in St. Paul, MN and an assistant professor of internal medicine and global health at the University of Minnesota. His recent diagnosis of Chronic Lymphocytic Leukemia in the summer of 2013 has required some significant work/life rebalancing and has underscored the importance of caring for patients in an empathic and kind manner in times when many are feeling particularly vulnerable.
Hendel-Paterson is a regular contributor to The Hospital Leader, where this post originally appeared.