The sheer trauma of facing the “big C” seems to be less daunting as the reality of what the treatment entails comes out. Treating any cancer isn’t something you can simply prescribe a standard drug regimen or operation. It’s a complicated, messy, painful process that dances the fine line between art, science, and intuition. I’ve spoken with two other AML survivors and their treatment is similar to mine, but because our age, physiology, and details differ, there are different stories. I’ve had two survivors of other blood cancers visit me thanks to the transplant social worker here at the VA who have shared their experience with me and while their histories were much more severe than mine, they had as well more remarkable survival stories. It gives me great hope that, given my own situation, that I have both reason to be optimistic and to take this thing very, very seriously.I was given a bit of a setback this morning as I took my IV pole for a walk. The fancy yellow bag that all the toxic waste gets disposed in, flagged a nurse in the oncology ward less than 100 feet from my door. He unceremoniously told me to go back to my room and chewed out my nurse for having the gall to let me walk outside my room. That escalated things in no time flat and I got an immediate apology from my nurse, who has been SO wonderful that there was some protocol that apparently prevents me from going outside my room with anything chemo-oriented. She apologized for the way this other nurse treated me and escalated it to someone else who escalated it further and I was visited by the head of safety, who brought things back into perspective. She came in and didn’t do anything but introduce herself and make sure I had everything I needed. She listened. She didn’t draw out the instance, but I did bring it up in a way that allowed her to take care of the situation without making a case out of it. I think between the two of us, this unpleasantness won’t happen to another patient. While I absolutely want to observe protocols and the safety of others, I’m an inpatient, not an inmate. I think that drove the point home. Suffice it to say, she did it right.
So, it looks like I will be doing 10 push-ups every time I go to the bathroom instead of walking around the floor. That’s partially due to the Leukemia Weight Loss Diet Plan® not exactly working. I’m up another pound, so they put me on a drug to make me urinate more frequently. Lovely, huh? I suppose that wouldn’t be such a big deal except that I have to unplug the drug metering devices that push the medication through the IV into me every time I get up out of bed. It’s pretty inconvenient, all told.
As Friday afternoon descends on the hospital, you hear the typical things you would at any other workplace. Co-workers wish each other a good weekend and it strikes me that I’m on what I used to call “perpetual Saturdays.” It really doesn’t matter what day of the week it is for me. I’m here. Weekends were not made for Michelob in the hospital. They are quiet, eerie places where the walking wounded rest. Thankfully, I have a retinue of visitors lined up for fun and games and I even have a junior slinky on my hospital tray I can play with. I’ll bet you haven’t seen one of those bad boys in years, huh?
So, we’re now moving into the stage of things where it appears to be the classic military, “hurry up and wait” phase. My nurse brought in a trend of my labs and it’s fascinating to see just how off my numbers are and yet I’m feeling just fine. It makes me wonder just how good I’d feel if they were where they should be – yet another reason that I am the eternal optimist.
A rather new acquaintance asked me essentially what I wanted to do when I got through this ordeal. I started making a bucket list of sorts back when the movie of the same name came out, but nothing firm. My goals had a lot to do with simply getting back to Utah for so many reasons, the least of which being, it is where I just feel I belong. But, as I pondered that simple question, one of the first things came to mind was to complete a century bicycle ride (100 miles) for Team-in-Training, a charitable organization that supports the Leukemia & Lymphoma Society. I had supported a high school classmate who ran marathons for the organization and I guess now it makes sense for me to give back to an organization that is out there for me as well. I’d really like to ride another AIDS LifeCycle, but this year, I think it’s safe to say that’s not likely going to happen. I don’t have a formal ‘bucket list’ even though mortality had its sites on me. So, I told my new friend that I had “too much to live for, too many unspoken desires, too many things yet to do, too many stolen kisses yet to claim, too many mountains yet to climb…just too much ahead not to fight.” And so it seemed that if there were any other motivation, that was it – too much ahead not to fight. As if there were any other option.
Thanks again to you all for fighting with me.