• 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.

  • Earth Day 40 — join the party!

    I haven’t posted anything with a political slant in a while, so humor me for a little while. This is actually a repost from Avaaz.org. (It was meant to be an email, but I’m posting it here instead.)

    Hi,

    To mark the 40th anniversary of Earth Day, an unprecedented movement is coming together to demand Congress pass a climate bill this year. Sign the petition now, and your name will be projected along with all the other signers on the National Mall at the Earth Day birthday party on April 25th. You can sign here:

    http://www.avaaz.org/en/earth_day_40/98.php?

    And here’s more info from Avaaz.org:
    ——————
    Read more

  • Losing my words

    Have you ever lost a word? Most of us have. Do you know what Dysnomia is? I did, but I had to look it up to make sure. Don’t be too impressed though. It was kind of my area of study in school, and we’re talking recognition memory all the way here. I couldn’t recall it to save my temporal lobes.

    Well, A few weeks ago I started misplacing words everywhere I went, and it was pretty damn hard to write. This is the story of how it came to pass. Eventually I’ll even tell you what the hell Disnomia is if you didn’t already know, hadn’t figured it out, or have the patience to hang around that long.

    Before I get to far, this isn’t intentionally a pity poor ‘ole me post. I consider myself and my experiences pretty darn average, with only a couple exceptions. So why write it at all, you may ask? Why blog? Think of it as another small piece of me.

    Now venting is another matter. No pity is required for catharsis.

    I’ve had headaches all of my life – or as long as I can remember. When I was a kid I didn’t tell anyone, assuming people dealt with headaches all the time. Headaches seemed mainstream. I heard my parents talk about them. I saw all the commercials on TV for “Extra Strength Tylenol,” and Exedrin – dramatic interpretations of the pain included. So I dealt with my headaches the way I dealt with most other things in my life: quietly and internally. When they got bad my temper got worse and the quiet kid became the Grade-A Ass.

    I was like a lot of people that way. I got a headache once or twice a week, I got grumpy, and I got over it. No one fretted over what was wrong. I didn’t go on a US tour of medical specialties. I saved that for later in life. I was just another kid/teen/man with the occasional bad temper, and didn’t like to talk about it.

    In 2007 I think something changed. I know something happened, but I think it changed something: body chemistry, general emotional state… something. My doctors humored me when I offered my hypothesis, with the trademark medical shrug: “There are a lot of things we don’t understand….” Loosely translated: “Nice try, but leave the wild-ass guessing to the professionals.”

    If you know me, or if you’ve been around for a while, you know 2007 was the year of my leukemia diagnosis and chemotherapy. It was also when my headaches started coming more frequently, enough that I started talking to my doctor about them, and taking something stronger for them.

    A year ago (maybe 18 months) they started interfering with work. Not a lot, but it was enough to keep me short on leave hours. A couple months ago it seemed like they stopped going away. Coincidentally (or not) a couple of months ago I found out the leukemia may be back.

    Wait a minute?!? I know what you’re thinking. Stress and depression as a trigger for headaches? Quick! Someone call The New England Journal of Medicine!

    A few weeks ago my team of doctors decided they were done shooting blanks at my head, so I was off to see a neurologist. He asked a lot of questions and I gave a lot of answers. He concluded I was having a lot of headaches and prescribed a few new drugs.

    Thank the good Lord I went to see a Neurologist when I did! I mean, who knows how long I might have gone without another prescription?

    Anyway, this leads me to the reason I’m writing now, and why I wasn’t writing before. One of the fabulous new drugs can cause a variety of side-effects, including the ominous sounding “cognitive deficiencies,” which happens to include Dysnomia.

    Dysnomia is just like having a word on the tip of your tongue, just out of your brain’s reach – only more often than normal. Imagine how hard it would be to write if this happened every paragraph or so.

    It was really pretty strange – freaky strange. Normally I don’t want my doctors to tell me the potential harmful side effects of a drug. I’m just fine with the standard: report anything odd. For someone with an advanced form of hypochondria, psychosomatic is more than just a word – it’s a lifestyle. But in this one case I was glad they did. It started shortly after I started. I had trouble completing sentences at the dinner table. I couldn’t write. I hid behind a pair of headphones at work and tried not to speak much.

    … and if I hadn’t known it it might happen – and likely resolve itself pretty quickly – I might have had a nervous breakdown. Strike that. I KNOW I would’ve had a doozy.

    Instead, I had a pretty good time with it (other than at work). I’m not someone who NEEDS to write every day, or even necessarily every week if I don’t feel the spirit move me – and I didn’t – so I was ok on that front. As for my mind failing me at odd moments… I suppose I could have… perhaps even should have been really frustrated. Instead I thought it was kind of funny. Maybe this was a sign of another, more serious problem, right? I mean, what’s so funny about brain malfunction?

    I’ll tell you.

    It’s the same reason I found parts of my chemotherapy/hospital stay back in 2007 sort of entertaining. Back then it was the aching bones, the sore and swollen joints. I felt like an old person, or imagined I did… getting the jump on how I might feel in years to come (barring certain advances in medical technology) – and finding it funny – a new experience to be savored not suffered. Though not exactly the same, there was the day sometime later when my wife said she wouldn’t trade natural childbirth for my experience.

    It’s not about the pity. It’s not about some twisted competition… who’s suffered more. It’s that I’ve surprised myself. I perceive myself as dark, brooding, and self pitying. But back in 2007 when something really was bad, and not just my imagination or a trumped up charge, something inside flipped a switch. I could cope. I was stronger than I thought I could be – at least part of the time anyway.

    Depression, headaches and the prospect of leukemia’s return have me down. I won’t lie to you. But don’t feel bad for me. I may lose a few things along the way, but I seem to have a knack for picking up a few things too.