Saturday, March 21, 2009


It's time again. Time for another transfusion. It's planned for Monday afternoon at 4pm. Another two units of whole blood.

My steroid taper has begun. They're trying to wean me of the thing I love/hate the most. I relish the change. I fear the change.

On top of it all, I'm headed for Dallas next Tuesday. I'll be there for 6 nights and I have to maintain my chemical balance throughout. Hauling luggage will be so much fun. Drugs, hydration, Foscarnet, pumps, supplies, etc.

On the personal front, Ed and I spent some time in Vancouver. Today was beautiful and we took a little trip 'round town. Ed suggested we visit a motorcycle museum. I took lots of pics, Ed learned a few things and says he actually enjoyed it. The theme of the display? "End of Empire" - an exemplary display of British motorcycles with a bit of a comparison to some early Hondas.

Paradoxically, it was shown in the exhibits area of a Harley Davidson dealership.

Friday, March 13, 2009

Good and bad

It's been a bit over 4 months since I rode the motorcycle anywhere. Between the weather, hospitalization, and a horrible lack of confidence, The Tigermobile has sat in the garage. Mind you, there's been a lot of attention payed to her, but she hasn't been out dancing in quite a while.

But today was 57F and sunny. I would have been ashamed if I'd stayed inside all day, so I suited up, donned my ears and tail, and overcame my apprehensions.

She's put on a few pounds since the last time we "tripped the light fantastic". She now carries The Tiger's complete office (laptop, cameras, first aid kit, locks, etc.) as well as having had an "augmentation" (additional headlights).

It still amazes me how light she is on her feet. It amazes me how natural I feel dancing with her. I lead, she follows instinctively. There is no negotiation, no arbitration. I say turn and she turns. I say stop and she stops. I say go and she asks how fast.

And that's the truly amazing part of it all. Metaphors aside, I haven't been on two wheels in a long time (for me). It's positively shocking how natural it is. It's like walking. Maybe even more natural than walking. It's like breathing. It's strange and I'm happy. This is good stuff

The title is "Good and bad.", so where's the bad?

The SCCA called me this afternoon. They requested another blood test and they asked me to get another "G" shot. I complied at about 4pm this afternoon.

What does that mean? "G" forces the marrow to produce blood across the spectrum (red, white, platelets, etc.). "G" has a fairly temporary effect on my blood counts. We get a bump up, I feel like somebody beat me with a garden hose, and then we get a drop in numbers. It's a temporary prop at best.

Now let's think about this: I was given 2 units of whole blood on Monday evening. The "G" prop-up is based on blood tests I had this morning, Friday. Yes kids, that's Monday night to Friday morning, or 3.5 days. Half a week.

Mind you, a "G" shot isn't a transfusion, and the "G" wasn't given to support my red blood cell count, but it's frustrating as hell to get these persistent reminders that my bone marrow isn't working.

Thank goodness Ed will be home in a few short hours.

Sunday, March 08, 2009

Weekly weakness.

I got a phone call today from the SCCA. Another blood transfusion is scheduled for tomorrow, Monday. It's only been seven days. This is NOT good. Not good at all.

They put me on a foscarnet infusion last Friday for a recurrence of the CMV infection that's come and gone several times in the last 6 months.

I wasn't kidding when I said I needed to survive the cure. Sorry, this isn't cleverly written. I'm frustrated.

Monday, March 02, 2009

I am .......

Since the recent diagnosis, I've been struck by the need to re-identify myself.

Don't misunderstand, I know who I am. People who know me, know me. However, my public persona has suddenly lost a distinct identity.

Let me be clear. Since the inception of this blog, I've always had an "incurable cancer". That expression imparts a level, a degree, a scale of "cancerness". It lends a title and rank to the seriousness of the problem. It says, "I probably will not survive this." It says lots of things. One of which is always interpreted as "terminal".

And now I've lost my title. I've been forced to abdicate. I've been removed from office. I've been Blagojevich'ed, Edward VIII'ed, Bishop Richard Williamson'ed. (Well, not quite, but you get the idea.)

Oddly, I feel a bit like a father who's taken his children to Disneyland. I spent a lot money and didn't enjoy it at all. Now, instead of being Superdad who's taking the kids on vacation, I'm just the old man who screamed "If I have to stop this car, some body's gonna get hurt."

Perception is changed by reality and the reality is that I will be perceived differently. Certainly I perceive myself differently.

"Cancer Survivor" is the title all of us have been striving for, but now it sounds so trite, like "CEO" or "MBA" or "high school dropout". Descriptive titles are everywhere. None of them mean anything without a definition and a history.

So how should I identify myself now...... What's my title? (Do I need a title? Do I need to identify myself?)

You see, the truth is that we need to re-enter the real world. We need to return to the land of the living. We need the simple aspirations and objectives of a normal couple who ask one another where to go on vacation, what's on the agenda for the weekend, and what's for dinner. We need to stop existing from appointment to appointment.

Because the amazing thing is: We got our wish. I'm going to live, and I'm going to have a decent quality of life.

We found Aladdin's lamp on the beach. We rubbed it and now the genie stands before us. Now what the heck are we supposed to do?

"Genie, make me the Chief Executive Carnivore at"
And so it is.

Hey, at least I wasn't singing "I wish I was an Oscar Meyer wiener!" when the genie appeared.