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I did not know that

In April it will be three years since I was diagnosed with leukemia, and I still don’t know my Doctor’s diagnosis. Oh wait, it is April isn’t it?

You’ve heard me say “Hairy Cell Leukemia,” but that’s the common name, a nickname. At least I hoped it was. What self respecting disease refers to itself as hairy? Surely there was an important, scary sounding scientific name. More importantly, I wanted to know what my oncologist tells my insurance company. I mean, that’s what makes it official, right?

I ask you: if a man gets sick in the woods and no one is around to pay for the treatment, was he ever really sick?

We’ll get back to the name in a minute.

A year or two ago my first oncologist’s practice merged with a larger practice, and the larger practice (a statewide mega-practice) wasn’t taking my insurance “yet.” After a few “regrettable” miscommunications (wherein I was presumed the mistaker) I flew the coup for greener practices.

Only now, with the wisdom of hindsight, the other practice doesn’t look so green. It looks more like Pantone 1-5-2 C (or Hex #B59B00 if that helps). If I really must hold your hand, it’s sort of a yellowish-brown.

The new oncologist committed a number of sins, according to my wife and my primary doc. That is: she left them out of the loop by not giving them the scoop on the leukemia’s coming out party last August. As I wrote earlier this year, I was happy living in consequence free, ignorant bliss for six months. My wife on the other hand, does NOT take deception sitting down, regardless of intention.

As a result, a two front war was waged for the newbie’s ouster. Lucky me, the fronts were either side of my head (though to be fair, my dear wife did most of the fighting, with my doc playing more of a reserve role). So last week I was browsing the online guide of providers blessed by my insurance and low and behold, my old oncologist (with his new mega-practice) was back in its good graces.

Almost as fast as you can say, “I’m sorry Cheryl, I forgot to call today. I’ll try to remember tomorrow…” I was on the phone making an appointment. All they wanted was the last couple labs done by the newbie oncologist, which I picked up last Thursday.

And that’s when I saw it, at the top of each page:

Diagnosis: Unspecified lymphoid leukemia, without remission
Histology: Hairy cell leukemia

Yep, now it’s real again.

For old time’s sake I googled Hairy Cell. I’ve read all this before, but I’m not sure I’ve written it down. I’m a real self-starter when it comes to anxiety. On a darker note: there is no cure. Patients require lifelong monitoring and follow-up. Patients have as much as double the risk of developing a second kind of cancer. Most patients go ten years or longer on their first remission, with subsequent remissions often shorter. My first one went two and a half years. Many sources say it’s most common in white men over 50. According to the Hairy Cell Leukemia Research Foundation, the median age of diagnosis is 52.

I am not now, nor was I 50 three years ago. (I’m 38 now – 35 back in the good old days.)

On an interesting note: in the US, 3 in 1,000,000 men will be diagnosed each year with hairy cell, as opposed to 0.6 in 1,000,000 women. Ten percent of those patients will not require treatment this year, as it’s only treated when it begins to affect lifestyle, or cause dangerously low levels of white/red blood cells and platelets. When this happens, the body is over producing defective, hairy white blood cells which clog up the bone marrow, affecting the body’s ability to make useful blood cells. In the case of hairy cell, it’s always the B cells which are abnormal, or hairy in appearance – cells also known as lymphocytes. This can result in excessive bleeding, bruising, anemia, fatigue, weakness, weight loss, loss of appetite, and all the great things that come with a suppressed immune system. It can cause the hairy and other cells to accumulate in the spleen, causing it to become enlarged. In some cases it’s removed, but not necessarily just to relieve swelling. It can also cause swelling of the liver. In some cases blood transfusions are necessary to replace dangerously low blood cell counts.

Less than 2000 people in North America and Europe will be diagnosed with it each year. Worldwide, only about 200 will die from complications associated with it.

Note: I don’t intentionally conflate a smaller diagnosis sample with the deaths taken from a larger population to make mortality rates seem higher than they actually are. 200 deaths worldwide is a very small number. These were the only interesting stats I could find for a relatively rare disease. Just keep in mind these are apples and watermelons – if you haven’t guessed already.

It is a chronic form of leukemia, thought to be a sub-type of chronic lymphoid leukemia. It can go years without being detected, often given away by general complaints of fatigue and blood work.

The good news is more than 95 percent of new patients are successfully treated by a single, seven day course of chemotherapy (cladribine), and it’s normally effective again. Although it put me in the hospital for two weeks in isolation (which isn’t normal – most people can take it at home with a portable pump in a fanny pack), it did work for me.

So all this time I knew what was in the name, but I didn’t know the proper name itself.

Boy, that’s a load off.

5 Comments

  1. There’s something so spare and so raw about this post.

    I’m glad your back with the old doctor, and glad that your married to a no-nonsense woman. God, I so prefer the Canadian health care system.

    I am an optimist by nature, so even good statistics don’t matter. You’re going to beat this. I am certain of it, and I want you to be, too.

  2. OMG… that was what Cheryl’s message to me was about. You are remarkably calm in the telling.

    To be clear: have you just gone through chemo and are in the clear today or did you have chemo in the past, were clear and now are not. I believe you had previous posts about having gone through chemo so I believe the latter of the two statements much be accurate.

    Watch out for the political mini-rant to follow.

    How is it that patients can be forced to select a care-provider based on the say-so of an insurance company? In whose world is this right? Would you let an insurance company tell you what colour ribbons to put in your daughter’s hair? Of course not, but your health and well-being, your actual life, that they can dictate? WTF?

    Thank you for letting me rant.

    Please keep us informed of where you go from here and give Cheryl a big hug for me. She’s my hero for being such a great advocate. Go, Cheryl!!!

    1. Hi Colleen, I don’t mind the rant. At some point learned helplessness sets in and you accept the fact that doctors come and go from your plan – some of us do anyway. Those of us that can afford MUCH more expensive insurance (or can pay out of pocket)… don’t have to.

      I’ve only had one course of chemo, three years ago. I was in remission until last August, but my blood cell counts are still good so it’s not clear when I’ll go through it again. It could be a few months… it could be next year. Hairy Cell seems to have it’s own schedule. So for now I’m just waiting for it to get bad enough to treat, when ever that will be. I’m seeing my old oncologist next week. I expect he’ll want to follow-up periodically with new blood work. When I was in remission he wanted new blood work every three months, so I can only imagine how often he’ll want my blood now.

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