Tag: Cancer

He laughed

Posted on

Do want to hear something funny?

Who doesn’t, that’s what I wanna know?

It’s not human.

It’s un-frigging-American!

But enough already. It seems I may have heart disease.

Did you bust your gut? Maybe blow a few rivets? You gotta hand it to my body. It’s a regular… well… some comedian who’s really funny.

There are five-year-olds who deal with worse better than I do with less. That said, I thought it would be cool to run through my medical menu of malady.

I’m 39. I take medication to (somewhat) control depression. I have a sleep disorder which keeps me from getting a full, good night’s sleep – ever. I have leukemia. I have a recurring problem with my neck, which may or may not have something to do with my inability to walk or stand more than ten minutes before my lower back goes Old Testament on me. (Wherein God invents the disproportionate response.) I have allergies which keep my sinuses perpetually closed for business. Something called anaphylaxis happens when I try to take allergy shots. I thought I had a bad case of heartburn / reflux. I still might.

The other day I went to my doctor with heartburn and left with a possible case of heart disease and strict instructions to go to the ER the next time I have “an episode like that again.” I’m supposed to have a stress test and an echocardiogram scheduled as soon as possible.

I gave the classic, schizophrenic response to all this by laughing. It wasn’t a rip-roaring belly ache, so it wasn’t enough to be committed, but it was a robust chuckle that came up smooth and finished with a hint of strawberries. I had strawberry yogurt for lunch and did not brush my teeth.

The next thing I know I’m at the drug store buying baby aspirin – when everyone knows babies don’t take aspirin – EVER. I laughed again.

So, where do I find this baby aspirin that babies don’t take? Surely they don’t like the odds of putting it on the pediatric aisle. It turned out I couldn’t even find the pain relief aisle. I laughed again.

I spent five minutes trying to figure out if “baby” aspirin and “low dose” aspirin were the same thing. They didn’t have any baby aspirin, but they had lots of this low dose stuff. I laughed again.

Cheryl worked out the logistics of a late night ER run. Adam told me he was worried about me going to the hospital. I replied, “If anyone was going to be nervous it would be me right? Do I look nervous? I’m not worried Adam so you don’t have to be either.”

I didn’t laugh. I think it might be the first time I thought lying to my kid was the right thing to do.

Now I’m in a funny place, but I don’t mean humorous. It’s like the place I visited in between my first blood test and the infamous bone marrow aspiration and biopsy. Now that I mention it, I can’t wait to get me one of those again! This is a little different though. I think there’s a slightly lower chance this will turn out to be the worst case scenario, but in the mean time – by it’s nature – is more likely to kill me while I sleep.

That’s a bit dramatic, but it’s in my head and there’s no getting it out.

So once again I wait in limbo. I’m pacing between the initial screening that doesn’t look good and the definitive test. It turns out “as soon as possible” is March third.

One year

Posted on

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.

Piles of life

Posted on

Like many of my posts, I wrote the lion’s share of this one some time ago. I was inspired to polish and post it by a friend’s recent, much better post.

Let me tell you a little something you may not know about sinusitis.

I do not like sinusitis. I do not like it with a nose. I do not like it when it blows. I do not like it in my head. I do not like it lying in a bed.

It’s been one of those… oh hell, I can’t think of what to call it. “Three month stretch” doesn’t roll off the tongue the way I’d like. I’ve been negotiating a cease-fire with a series of colds/infections since November, but talks have stalled. They’re tricky bastards, I’ll give them that.

Plus, they have a superior negotiating position. Sudafed doesn’t strike fear in the heart of the common cold… or the uncommon for that matter. As far as they’re concerned, they can just sit back and let the good times roll… until my battered and bruised white blood cells finally catch up. Even then their retreat is more like leisurely packing up after a long vacation, having arranged a late check-out time with the front desk.

There’s something about being able to feel my heartbeat in my head that keeps me from tickling the keys on my MacBook. Worse, depression has taken something from me it rarely does: the desire to write. The depression has been on more than off the last couple of months. For those of you keeping track, you’ll recognize this as my latest excuse for silence – the disappearance of my words from the internets. For those of you keeping score, I’m afraid I don’t keep track anymore.

The sleep thing may play a roll too. I better not downplay its role. If you disrespect the sleep thing it’ll come back and bite you in the ass.

What is the sleep thing?

The first rule of sleep thing is you don’t talk about sleep thing.

I’m willing to risk it for you though.

It turns out my fidgety nature can be explained by a disorder. It’s not just any disorder, but a full blown syndrome. (Yep, another specialist is in business now!) It’s the syndrome with the funny name. It follows a pattern in my life. I have the stupidest sounding form of leukemia (Hairy Cell), and the syndrome least likely to be taken seriously… Restless Leg Syndrome. I feel like my IQ drops 100 points every time I say one of them.

I know what you’re thinking. “But John, you don’t have 100 points to spare. You do know it’s not possible to have an IQ less than zero, right?”

Fair enough, but let’s leave the irrelevant or irreverent sidebars to the professionals, ok?

If Restless Leg Syndrome drew a picture in my mind, it would be a little boy in desperate need of a urinal.

A funny sounding syndrome is worth at least half a dozen pictures, courtesy of my imagination.

O.K., I do look like a little boy who has to pee. Laugh it up, fuzz ball.

My knees bounce so much during the day I think I’ve developed a repetitive motion injury in my foot. I can’t stand or walk for more than twenty minutes before my feet are killing me. Not long after, the pain starts to travel up my legs to my knees and eventually my hips. You should see me after I’ve soldiered through a day at an Orlando theme park (for no one but my kids). If your name isn’t Adam or Beth, it’s best you don’t talk to me. Throw in some sloth (which I’d like to explain away with a lot of things not under my control – making it something not sloth), and you’ve got a dude with little endurance and bad joints.

I get all of this thirty or so years before I can retire. That’s assuming I’ll ever get to retire, or I aspire to retire. Send this one out on the wire: John don’t mind living his whole life in government quagmire. Admit it: it’s something you admire. But enough of this, I’m beginning to tire.

I used to drive Cheryl crazy when we were first married. In fact, she’d probably tell you I was a little late with the punctuation in the last sentence (to say nothing of the verb tense). “Would you please stop shaking your foot?!?” I used to hear it all the time. I can but it takes effort. Sometimes effort and sleep don’t mix. You ever notice sometimes trying something makes it less likely you’ll do something. Sometimes I sleep in another room.

I did a sleep study and they told me I could go early if I wanted to, they had enough data. I was shaking myself out of the normal sleep cycle (without quite waking up all the way) more than once every two minutes. This wasn’t a little leg twitch. This was full body involvement.

There are folks in New England who shake less taking a dip in the pool during a winter nor’easter (assuming they’ve salted the pool, of course).

It turns out the medications used to treat depression tend to make RLS worse. But that’s o.k. because the medications they use to treat RLS make my depression worse too. So I don’t take the RLS drugs. I tried anti-convulsants but they did nothing. I tried supplements with varying degrees of success – but nothing I’d consider acceptable. I take several drugs for their off-label works of wonder, but they don’t work entirely either – or at least all night. As an added bonus, they can make you drowsy. I think every medication I take made someone drowsy during a clinical trial.

I didn’t know this before, but it turns out one of the side effects of poor sleep is also drowsiness.

Predictably, I’m a bundle of energy.

I sleep more than I should (sort of), making up for the quality with quantity. However, sometimes depression, anxiety, or the fracking sinusitis keep me awake, or yank me fully awake prematurely. The result is I’m the guy who looks like a lazy slacker, spending his lunch in the car asleep. The next thing you know, our new Tea Party Governor will be holding a press conference at my front bumper, feeling giddy with vindication – exposing the typical government employee for what he is. The anchor person for one of the local newstainment shows will come on next promising snoring at eleven.

For the last year I’ve been spending a lot of time working from home, more than I meant to when I asked my boss if I could. My concentration has been staggeringly fragile, and the cubicle farm at the “office” feeds the tension headache fairy nicely. In fact, I hear she’s put on a lot of weight recently.

I’ll bet you thought fairies always brought you good stuff.

Over the last few years I’ve done the Family Medical Leave Act drill a couple of times, more for the protection than actually taking leave – and definitely NOT for taking unpaid leave. (We proud American liberals had to work really hard to gain the right to take unpaid leave when we’re really sick or pregnant.) I often wonder if I’ve worked myself right out of folks’ respect. There was a time when I was a bit of a golden boy, the fair haired child. Now I’m the guy who can’t be troubled to stay in the office for eight hours in a day. I’ve become the guy you can’t rely on for meetings, work groups, or special projects. Occasionally I overhear conversations… folks wondering why someone who can’t work in the office can work at home.

Please excuse me for feeling sorry for myself, but a part of me mourns what feels like a terrible loss: my credibility.

Then I got sick for a few months this year.

I try to set all of it aside. “I am relatively lucky,” is my mantra. I have a job, one that accommodates my quirks. That itself is a HUGE blessing. I have a wife who puts up with me, most of the time. I have an idea what it’s like to be in her position… worse even. I grew up with my mother. I know it’s not easy. Somehow I’ve managed to help raise a special needs child to the brink of adulthood, though folks often say the brink is the most challenging part. I have a brilliant son who seems to make fast friends with almost everyone. I just wish he’d use less of his brilliance trying to manipulate his parents and playing the angles. Sometimes it feels like we’re raising the world’s best grifter.

And I have you, who ever you are. I can’t fathom why you’d ever come back, but I appreciate it more than you know. You care enough to come, time after time, subjecting yourself to this. It’s a heart warming thought.

One of my biggest fears growing up was I’d be alone. I don’t think it was an unreasonable fear – being an aloof, shy kid. Sometimes I think expectations are the biggest threat to good mental health, but in this one case I think it’s worked out quite nicely. I’m not surrounded by a throng of admirers everywhere I go. I don’t even have a lot of friends. But most importantly, I know I’m not alone. I may be a lot of things, but I’m definitely not alone.

As for the day to day, mundane things in life, I try to embrace them, to treat them like they are not mundane. I say try because I often fail. It wasn’t always like this. That’s what I cling to: memories of enjoying a chore like laundry with my kids. Not every minute can be Christmas morning opening presents, but you can find a little joy in little things done well.

As for the small problems in life, I try to keep them small. It’s an issue of perception, right?

What ever it is, I’m doing something wrong. Maybe it’s a matter of focus. I do some things right. Somethings I even do well.

I’d like to remember what it feels like to appreciate those things.

Holding the line

Posted on

There are no changes on the blood front, which is decent news. Part of me would like the hairy cells to get busy so I can do the chemotherapy and get it over with already.

But if I think really hard, I can remember what it was like last time.

Most of me is good with putting it off. The cure is much worse than the disease.

My mastery of the obvious wanes

Posted on

Common sense struck fourteen hours too late today.

You should know this already, but if not, take this opportunity to learn from others’ mistakes.

How did I become an other? Oh woe is me! Am I the mother of all others?

If there’s any chance a doctor’s appointment may cause worry, for God’s sake people, take the morning appointment!

How it fits into your work schedule should be WAY down on your list of priorities, unless for some reason missing time at work will cause more anxiety than the long wait. In that case, you have no alternative. Take two happy pills and call me in the afternoon (if you’re a little too mellow to drive).

Ready or not

Posted on

I was mentally prepared for my doctor’s appointment on Friday. By prepared I mean it was sufficiently far off in the future I hadn’t thought about it.

His office called me this afternoon, asking if they could bump it up to tomorrow.

No, I’m not ready.

“Yeah, that’ll be fine. I’ll see you tomorrow afternoon.”

Ugh.

So tomorrow it is. Another date with my oncologist. There’s no reason to worry.

But that doesn’t mean I won’t.

Guilt, meet thy maker

Posted on

A while back I wrote about a call I received in court on a really bad day. It invovled mistaken identities, my mother, and the possibility of cancer. If you recall, there was an instant when I was relieved it was my mother – because it meant it wasn’t my wife. I’d made a choice, consciously or not, and it made me feel terrible. We all make them. I don’t think we can help ourselves. I think my guilt came not just from realizing I’d made it, but from letting it be known.

So what did I do then? I recounted my mistake online for the masses dozens handfull reading my blog.

Ah, but you’re my therapy, and the price is right.

The last post I briefly discussed root causes. Today’s (wild ass guess at a) root cause* is lithium toxicity. My mother took lithium to treat bi-polar disorder for 20+ years. A little more than three years ago, right before I was diagnosed with leukemia and my dad had a little trouble with his heart again, doctors detected partial renal failure/deficiency in my mother. This was (partially) a product of the damage the lithium did to my mother’s kidneys over the years.

In hindsight, I wonder if the anxiety of this news led her mind, on top of everything else, to its rapid decline that summer/fall. From what I know of renal failure, it’s not something your kidneys ever recover – it’s a downward slope. The only question is: how steep?

Well, that was three years ago, and while her mind has improved (relative to a year ago) her kindeys have not. She seemed to be getting along, though none of us (her kids) knew exactly what her kidney function was. It’s not something we ever though to bring up, and I honestly don’t think she’d have known anyway. That’s what the drugs and a two year break from reality do to you.

Well, I’ve led you to the dot. Have you connected it to it’s friends yet?

That call about the suspected tumor? I found out two weeks ago it’s in one of her kidneys. What’s worse, it’s in the better functioning of the two.

Better is a relative term. The ultrasound report suggests both are seriously atrophied. The nephrologist in the family was a little shocked.

I don’t have a lot if hard facts to go on, but my sister is the aforementioned nephrologist, and I have a poor man’s background in pyschology. Pooling those resources with the facts we do know makes me worry the prognosis is not good.

Mom’s mind has shown some signs of regression, though it’s still a long way from where it was a year or two ago. I just hope it stays that way if they confirm a cancer diagnosis. Or if they have to remove too much of her “good” kidney. Or if she has to start dialysis. Or if she has to be hospitalized at all.

I fear fragile doesn’t begin to explain what she is, physically or mentally.

I know. One thing at a time, John. One thing at a time.

– – –

*I don’t mean to imply lithium caused the cancer – or even directly caused her poor mental health. I only wonder if its known toxic effects led to a domino effect starting with her kidney failure three years ago… to mental breakdown… to institutionalization.

The MRI

Posted on

The background: Cheryl (known to many of you as my wife) had an MRI done recently due to chronic back pain.

– – –

It was one of those court days where several people needed to be escorted out of the building. A little conflict goes with the territory. Your agency sues someone, you expect a little hostility. In fact, it isn’t uncommon for both sides to leave with no love to spare for anyone in the room.

But this day was bad. One for the books bad.

Sometime past mid-day, my phone buzzed – vibrated really. I checked the number really quick, to make sure it wasn’t one of the kids’ schools. It wasn’t, but it was a local number, and I don’t get a lot of calls from local numbers. I handed off to my partner and stepped out of the room to answer.

Hello?

“Mr Kauffman?”

Yes.

“Is this John?”

Speaking.

“We have Mrs. Kauffman’s MRI results.”

Ah, ok. Why didn’t you call her?

“We have you down as her primary contact.”

That’s… odd.

“Well, we could call her if you like.”

That would probably be best.

“You should know we found something though. She’ll need to follow up with a specialist as soon as possible – in case I don’t get through to her.”

Somewhat alarmed, what kind of something?

“We found a solid mass.”

What does that mean?

“I don’t know, you’ll need to follow-up with the specialist.”

Can you give me a hint?

“You’ll need to follow-up with the specialist.”

Could it be cancer?

“You’ll need to follow-up with the specialist.”

It probably isn’t just a cyst, is it? They wouldn’t appear as a solid mass, would they?

“You’ll need to follow-up with the specialist.”

Can you tell me where it is?”

“You’ll need…”

I know, I know – follow up…

“… With the specialist, Mr Kauffman. It’s really important you do so as soon as possible.”

Ahh… alright… let me give you her number….
Listen, if you don’t get through to her, could you give me a call back. I’m in court today – I probably shouldn’t have been away this long – so I probably won’t answer; but could you leave the information about the specialist on my voicemail too, so I can make sure we follow-up?

“Sure Mr Kauffman. I’ll give Kathy a call right now.”

Did you say Kathy? Kathy is my mother not my wife.

“Yes, Kathryn Kauffman. It says here her primary contact is her son, John.”

Kathy! My mother?

Immediately I realized I said this with relief, and immediately I felt really guilty, followed by really worried… for my mother.

“You are her son, aren’t you?”

Yes, but I’m surprised you called me. I haven’t been the primary contact for any of my mother’s medical problems. I’m not sure I even have legal authority to handle her affairs. My father has been taking care of her. I have his number, but I’d be surprised if you don’t.

“Oh wait. Here it is. Sorry to bother you Mr Kauffman.”

Oh sure, no problem. You just made me pee my pants on possibly the worst day at work of my life. Just think of this as the gravy on the mashed potatoes my life has become.

I was talking to empty space though, the nurse making a hasty retreat.

From the frying pan to the fire then into a pre-heated oven for the rest of the day – yep, that was good eating.

– – –

On a related note, I get to have my first MRI next week – like, EVER!

How exciting is that?

Yep, it was just the other day (about four after the court day from the hot place) I was talking to my bran spankin’ new neurologist (new to me – he’s been practicing his craft on patients for 20 years now), when he mentioned my patern of gradually worse headaches, my history of leukemia, and how it wouldn’t be a bad idea to get a few high tech images of the space between my ears.

I can’t wait – another opportunity to skip work!

I did not know that

Posted on

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.

Losing my words

Posted on

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.