Category: Cancer

Part-time cynic

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If best intentions hold steady, I’ll be returning to work in some capacity in less than a week’s time. A week is an important psychological boundary for me. When I thought to myself, “I’ve still got a week before I need to go back,” I felt comfortable in knowing that no matter how tired I felt at the moment, I still had a significant amount of time to build up strength.

I think it’s analogous to the $999 price point for computers… or maybe not.

In either case, I’m down to less than a week; so I decided to put myself to a test, of sorts. I decided to see how my body reacted to a little stress… so I decided to read some news… politics in particular. I’ve stayed away from serious news since that bad episode in the hospital (when rigors of news put me into a fatigue induced slumber for several hours).

I’m happy to report that so far all systems are still functioning.

I also feel compelled to share my favorite quote from today’s foray. There’s a column in today’s Washington Post (by Dan Froomkin) discussing the stink over White House staffers using private RNC email accounts to conduct official White House business… a possible violation of the Presidential Records Act. He brings up the White House defense that staffers used the private accounts in an abundance of caution “… in order to avoid violating the Hatch Act, which prohibits the use of government e-mail for overtly political purposes.”

Without further ado, here’s my favorite part, in Mr. Froomkin’s words:

A cynic could even argue that Rove and his operatives have so intertwined politics and policy in this White House that it would be understandably difficult for them to determine whether they should be using RNC or White House accounts.

Indeed.

Beware of area code 352

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My wife thinks I’m being silly.

But that’s not news.

My latest adventure down the road to lunacy involves my alma mater: The University of Florida. It was about mid-April when I received my very first solicitation for money.

“Can we count on your donation of $1000?”

If I had been drinking it would have shot from my nose in a fountain of incredulity.

“Ah, no.”

“Can we count on your donation of $500?”

“You’re still cold, but your getting warmer.”

“How about $250?”

“Would you take $100?”

And there it was. I had agreed to send my old school; the place that shaped me into the man I’ve become (don’t laugh) $100. About a week later I got the letter in the mail with my pledge card and the address to send the money. Like everything else that comes in the mail asking for money, it sat on my desk for the customary one week waiting period. It was during that week that I found out I had Leukemia, and I never sent that check.

This was my dirty secret for several weeks. Cheryl didn’t know that I’d agreed to give UF money, but I thought it was something important to do. Maybe I’m naive, but I thought I owed UF something. It was an important part of my life and I felt like I needed to give something back – even if no one but me noticed. Then Cheryl noticed the calls I was ignoring on my phone. It was area code 352… Gainesville, Florida… UF. I couldn’t face them. We were blowing money left and right to assuage my medical fears, the savings took a hit, and suddenly $100 seemed like a lot of money again.

Finally, one night not long ago, I told Cheryl my deep, dark, secret.

You know what she did?

She laughed at me.

“John, just tell them you got really sick, you were in the hospital, and you’ve been out of work for over a month. I think they might understand.”

I still haven’t answered any calls from 352.

What can I say? I hate disappointing people… even people who’re probably making 500 calls a day and couldn’t care less what I have to say. Maybe if they call tomorrow I’ll answer, but I’ll still feel a little dirty.

She’s killing me with kindness

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If you’ve read any of my previous posts, you know all about cancerboy… so I won’t rehash my physical condition to date.

But keeping it in mind, how do you suppose my body would respond to a sudden spike in physical activity? That’s where my wife comes in. She thought it would be a great idea to get me a Wii for father’s day. She gave it to me tonight so we’d all have the weekend to give it a workout.

Mind you, this afternoon I worked up the energy to do some laundry for the first time. Now, it’s Wii-Day, H-Hour + 4, and I’ve worked up a sweat, I feel like I could puke, and I have tennis elbow.

And tomorrow I’ll do it to myself all over again. It’s that much fun.

I wonder if there’s a warning label in the manual somewhere, advising consumers that they should consult with their physician before starting a Wii regimen of activity.

Slow and steady

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Today was the first day since the chemotherapy started that I can honestly say I enjoyed. No, the cancerboy isn’t back to 100 percent; not even 75 if truth be told. There was this unfortunate incident with a plunger and a toilet that I don’t even want to talk about, other than to say the ordeal left me physically drained.

Although, working out your plumbing related issues with the business end of a big stick could do that to anyone.

The secret to today’s upswing was striking a bit of genealogical gold. I’ve been doing a little work trying to find/obtain documentation to back up my prior research… and today several pieces fell together. I had a pretty strong indication that a few of my ancestors fought in the American Revolution, but I’d had trouble finding the documents to prove it. Today it all fell together.

My wife thinks this is positively wonderful, and my daughter should apply for membership with the Daughters of the American Revolution as soon as she’s eligible (you have to be 18). I’m not sure I share her enthusiasm. Maybe it’s just me, but the whole thing seems a little pretentious… not to mention the group has a history of racial discrimination.

In any case, I’m happy as a clam just knowing.

This is home

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Friday was a strange day. I had spent the last two weeks in a single isolated room. Despite the disruptions, the rhythmic noises of the hospital slowly became what was “normal.” Then just as abruptly as the hospital stay began, it ended.

When I got home nothing seemed normal anymore. Everything was off, down to the smell. I asked Cheryl if she’d sprayed something or changed any of the cleaning products; but no, everything was the same… save for me. I can imagine it might have been the same after taking a long vacation… but I haven’t done that in years.

My energy level was another surprise. Who would have known that being at home would be so tiring? It doesn’t take much energy to be cooped up in a single room, but a house has so many choices.

The good news is everything feels like home again. Everything looks and smells right. I just need to work on that energy level. I’ve been taking short walks down the street. Once I even spontaneously jumped into a gleeful trot, and it would have been wonderfully liberating if my knees hadn’t turned into Jell-O at that exact moment.

Home

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My hospital stay is over and I’m back home. It was two weeks ago today that I left.

I spent some of my energy in the hospital thinking about when I’d get to leave. Now I find myself spending energy fearing I’ll have to go back. I guess they’re right, sometimes ignorance is bliss.

WHAT?!?

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The oncologist just left my room. My WBC is up to 3400 and my platelets are in the normal range.

But most importantly… he said I could go home today.

I still have to get a sign-off from my other two doctors, but they seemed to be taking their cues from him.

It’s a little hard not to get my hopes up at this point.

For once I was right

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I have a lot of experience being a visitor in a hospital. When it comes time to leave, I’ve often thought that evenings must be the most lonely time. If you’re visiting someone in the hospital, you’re almost always leaving someone behind when you go. Evening seems like a time when a lot of people might be leaving people behind.

In a few hours I’ll have been in this hospital for two weeks, and I haven’t had one moment when I’ve felt profoundly alone. Not when a good nurse changed shifts. Not after friends had left after a nice visit. Not when another patient down the hall cried out in agony. Not when my head screamed or my stomach lurched with the slightest movement. Not even after my wife left this evening.

Don’t get me wrong. I’ve felt the loss of my family’s company – painfully at times, but I haven’t felt completely alone.

Tonight I took a walk down the hospital halls at dusk… a little after 8 p.m. local time. I rounded the oncology wing of the fourth floor and stopped at the large window of the waiting room near the elevators.

As I stood staring out the window I heard several people push the call button for the elevator to go down. Each time I heard the doors cycle I heard people going, but never coming.

As I stood staring down at the hospital entrance below I imagined the cars I saw were their cars. Each time I saw the dim glow of tail lights, never the bright glare of their headlights.

As I stood listening for the activity of a busy hospital I heard nothing, and that’s when I finally felt it.

I felt alone.

I walked back to my room, squealing IV stand in tow, and surgical mask in place. I passed one empty nursing stand, then two. I saw a familiar nurse leave a patient’s room and made ready to wave in case she looked my way, but she didn’t.

Now I’m in my room; isolated from more than just other people’s germs. My mind knows that I’m not truly alone, with a loving family just a few miles away. My mind knows that I won’t be here for long… that I’ll be with that family again, just a few miles away. My problem tonight isn’t what my mind knows, but that my heart refuses to listen.

Maybe

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My counts are starting to race upwards; 1800 for the WBC this morning. And (knock on some wood for me), no fever last night. The doc says there’s an outside chance I could be going home as soon as Saturday.

(Please, please… no more fevers!)

Must… stop… scratching

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Foreword: I generally like my doctors.

Sometimes I wonder if my doctor has a string in his back and someone gives it a pull every time he’s supposed to speak…

“Good morning doctor.”

“You’re looking good today.”

“Yeah, but I can’t shake these fevers.”

“Your blood cultures have been negative.”

“Well this rash is killing me.”

“You’re on a lot of medication.”

“Is there any chance I’ll be going home soon?”

“You’re looking good today.”

“Is there anything else we can check, or anything else we can do?”

“Your blood cultures have been negative.”

“Do you know that you’re starting to drive me crazy?”

“You’re on a lot of medication.”