One year

On this day, one year ago, I learned my leukemia was not in remission anymore. The disease I think about every day anyway, was back on active duty.

But you know what? The numbers from blood tests the docs look at to determine when it’s time to start chemotherapy haven’t changed since then. The disease remains better than the cure, so I continue to wait.

My red blood cell count, along with my hemoglobin has been a little low – but not drastically. One kind of white blood cell, my lymphocytes (those B cells and T cells everyone talks about) remain low, but the doctors told me early on they would probably remain low for the rest of my life (part of the reason my immune system isn’t as robust as it once was).

I’m happy to be where I am though. I’m not clamoring for another round of chemotherapy, or another few weeks in isolation at the hospital.
That was not cool. I was never on death’s doorstep, it just felt like it at times.

Maybe I’ll be telling you the same thing next year.


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.

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The new doctor

The effect was fleeting but appreciated. I finally made an appointment to see a new oncologist and she was really nice.

I’m always nervous about seeing a new doctor. They play an important role in life and I’m afraid of getting one I don’t like or trust. The logical thing to do when this happens is switch, but I usually don’t – not for a while anyway. In fact I’ve only switched doctors voluntarily once. Hate is a strong word, so I’ll say I REALLY didn’t like one guy… but I still stuck with him for several years. I’m sure it has something to do with the relative trust in the devil you know versus the one you don’t, not that all my doctors are Satan’s spawn, but my facility for logic is easily lost in the face of fear.

I should say that I really like most of my doctors, and not just because I trust their professional judgement. I like them on a personal level. They’re kind, patient, and caring.

sandspur_sm.jpgMy oncologist was an exception. On some level I liked the guy, but at times he fit my stereotype for the highly educated/paid professional: he was a bit of an arrogant prick. Mind you, I’ll take a competent doctor, even if they have the personality of a sand spur. If it starts to affect my trust then I’d have a problem, but that wasn’t an issue with my old oncologist. Quite the contrary, I trusted him implicitly. I think it’s part of the reason I put off scheduling an appointment with a different doctor when the insurance issues started.

All of these concerns were put to rest this afternoon. I found another kind doctor, someone who seemed to know her stuff – and care about the person behind the symptoms.

I left the office feeling pretty good.

It wasn’t enough to crack depression’s hold for long. I found myself back in the emotional valley soon enough. But, I’ll still take all the good I can get.

Just in case there’s any question, there’s still no sign of cancer in my blood. My doctor’s are confident it’ll be gone for years, and even when it does come back it’ll be easy to treat. It’s not something I was worried about going in, or going forward. I’m odd this way: all worked up over which doctor handles my routine check-ups.