Monday, April 22, 2013


I find my writing often skirts territory bounded by being a bit didactic and preachy on one side and TMI (too much information) on the other. Some of the things you think about from a hospital bed or even in your own bed if you’re pondering the joys of cancer may come across as a bit pretentious or pompous if not approached with the right balance of sobriety and sincerity; and navigating to that point may include material that could be considered icky, immodest, or downright inappropriate if not handled well. Such has been my challenge in presenting the day-to-day things I experience physically and work through mentally and emotionally. The biggest battleground for me has been in the mind with this thing called cancer.

Sure, I’ve had some bouts of feeling really lousy. There has been quite a bit of discomfort related to my treatment. There have been the headaches resulting from the stab-me-in-the-back (aka intrathecal) chemotherapy and spinal taps; there is the anemia that has caused a number of really inconvenient things, and the chemo sometimes just makes me feel really awful. In fact, during my first hospitalization, the induction chemo made me feel worse than I ever have felt in my life. Waking up seeing my mom dressed in a yellow paper gown at the foot of my bed and me barely able to register her being there is something I wouldn't wish on anyone. Of course, the alternative of not waking up at all doesn’t excite me too terribly much!

Today, one of those physical things was a bit embarrassing, if not a bit funny (you have to be able to laugh at yourself) as I dropped my car off for some routine maintenance.  I was walking out to meet my mom who was giving me a ride up to the hospital. I had my laptop and my gym bags both slung over my shoulder and carrying a cup of coffee in a cardboard drink holder. The wind blew a napkin from the tray and as I stooped down to pick up the napkin off the ground, the weight of the bags pulled me over backward and I landed flat on my posterior...I saved the drink for my mom (good son that I am!) but my weakened legs were unable to lift me back upright with the added weight. That’s hard for someone who pressed 300 pounds just weeks ago and cycled over 500 miles last June. But that’s reality right now.

Jim installing my PICC line. Not a real
pleasant procedure, but it's not bad either.
A little bloody as you can see.
Today marked the beginning of my second 28-day cycle. I begin another round of consolidation chemotherapy in the morning. To save me from becoming a human voodoo doll this week, I had my PICC line re-installed today. This time around, I saw the 3” needle that went into the vein as well as the ultrasound. Since my veins have gotten smaller, it’s not a really pleasant feeling. I understand that while in Seattle, I’ll need something called a Hickman port.  It is different from the PICC line that is in my arm as a Hickman port is surgically implanted in my chest, but essentially does the same thing as a PICC line. It allows the same function as an IV as well as blood withdrawal for testing. From what I can see in pictures, it allows me to flush it myself whereas the PICC line is in my arm and makes it pretty much impossible. It’s a bit uncomfortable tonight, but I much prefer that to getting stuck at least eight times (for labs and assuming that they’d leave an IV in for at least the day), not including the misses that inevitably happen.

On the plus side, after being here as much as I have, it was like homecoming week and I got the best room in the house. What’s just a little disconcerting though, is that the room I have is the room set aside for hospice care. It has a couple of things other rooms don’t have like a lot of chairs ostensibly for family. I have a lot of visitors stopping by, so that’s a good thing.  It also has a little microwave and a fridge like an extended stay. I guess that’s a good thing though in that I’ve never seen the room used and there are a number of beds open in the acute care area, meaning not a lot of people are seriously ill…and no one on their way toward checking out permanently.

And as I’ve said, I have no plans on checking out. But who plans on that sort of thing? Ah, the estate planning lawyers are slapping their palms on their foreheads and exclaiming, “Exactly!” about now, aren’t they? I did put together an Advance Planning Directive when I arrived for my first stay at the local franchise of the lovely Hotel California and as I spent the weekend doing a lot of spring cleaning, I realized I felt the need to have my affairs in order. During our weekly family coffee klatch, I was once again reminded pretty explicitly about exactly that.

No one should mistake responsible planning for a lack of hope, because in reality, it’s more likely that I get taken out by a distracted driver who is focused more on the text message that just arrived than me on my bicycle or crossing the road on foot.  That inch difference on the steering wheel could be enough to create one of those Newtonian physics problems where two physical objects don’t occupy the same place at the same time. I don’t have a lot of material possessions nor do I have any real assets where there would be one of those dramatic readings by some lawyer. Rather, making a few decisions now makes it far easier on those we leave behind. For example, I am an organ donor and I’d like to leave my mortal remains to the University of Utah to train doctors.  After all, I’m not using the body any longer. I’ve made that much clear to my family.  As for the details like who gets my personal possessions, I need to write that out. And the thing that got me thinking over the weekend is what happens to our on-line presence when we pass on? Unless we have someone take charge of that, it just stays there and becomes the property of some faceless person who doesn’t care. Something to take control of, to be sure.

So my public service announcement of the day is to have a plan for your passing. It’s not morbid, but rather the greatest act of consideration and love to those you leave behind. And it’s peace of mind for you. My battleground is not so much with death and dying even though that is certainly part of my thought process for obvious reasons, but the getting from here to there. Because my doctor is now maintaining me at remission so that I can be ready for the transplant, my mind wanders to the next stage in the treatment: the actual transplant.  While the technical side of that is pretty well understood, in that it's in another state with a different medical staff than I've grown accustomed to, and the literature I've read from that VA hospital is rather impersonal (bordering on strict), it has been intimidating. I recognize that there are a lot of things that will be cleared up once I arrive and there will be a whole lot more positive than negative once I've gotten acquainted with the people and the process. Until then, it's hard to keep the mind reined in.
The big clock on the wall says it's time to turn in, so enough for tonight.

Music for the day - "Sleep" by Eric Whitacre.  If you've never seen the YouTube videos of Eric Whitacre, they're fascinating.  They're combinations of hundreds of individuals who contribute on-line.  If you liked this, the one that is absolutely haunting is Lux Aurumque
Be well, stay strong, and much love to you all.