To say that everything that could go wrong has gone wrong is absolutely not the right statement, I know because I have been in a hell of a lot tougher spots than I have been in the last 10 days. That said, this period is some of the toughest post-chemo time I have ever spent fighting infections and fevers. I am physically worn down to the point where it is very visible and I know the last 10 days traveling has been kickin’ my ass – big time.
Although my fevers haven’t shown any real encouraging signs of dropping, I think my general well being has improved just slightly in the past 48 hours. As I lie here today, I have a hemoglobin count of 72 (a normal one is 140-160), and in the past I have never tolerated low hemoglobin. Could be my height, could be just me. But some patients don’t tolerate it, and I’m one of them. The main symptoms are supreme low energy and I often get what I call “hemoglobin headaches.” Fortunately the headaches haven’t started yet, but that supreme low energy has kicked in and most every motion today has required major effort on my behalf.
The docs are still comfortable with my antibiotic set-up and are encouraged by the slight improvement in my general well being. The Hickman infection in my chest, of which I have some graphic pictures to show you all soon, has made significant progress and hopefully that is representative of my body’s infection. Yesterday I had a CAT scan of my abdomen and chest, and while CAT scans aren’t sure-fire tools to diagnose infections, their inability to find one is a Positive. (I might consider that a “break”, but the way things are going, I would feel like I would be getting cocky, so let’s just make the quiet note for now.)
I now want to talk a little bit about my focus and specifically say that I feel it got away from me during certain parts of the past 10 days. Because I am an experienced patient the knowledge of what is to come can be quite an asset, however, I have learned that it can also be quite a distraction. As hard as I tried to focus on the day, I know there were lots of times I let that focus waiver as we explore future options for bone marrow transplant and new treatment developments in other parts of the world. While I have absolutely no trouble exploring those future treatment options, I feel I am not the one to do it right now. So, I will pass the responsibility to my very capable parents and then resume a more active role in that process when I feel the time is right.
I do feel I have let myself down in this manner because I did not maintain my 100 percent day to day focus that I chose many weeks ago. I wrote to you all about my belief and the value of that focus and it is stronger than ever, so I am recommitting to it – fully, completely.
I understand that things are starting to happen in the outside world regarding the promotion of my journey. Being inside the hospital for the past 2 1/2 weeks, with no TV, radio or print access I am totally cut off. The plan is to build a wave of interest increasing the number of people joining us on this journey – probably kind of like Forrest Gump’s run across America, but with less facial hair for me!
I want to congratulate my friend Leslie Doyle for her great write-up in this week’s Herald about my journey and for their continued support.
That’s where we are. I am firmly recommitting myself to my day to day focus and am confident that is the approach that will get me through these struggles. Thank you so much to those of you who have written emails and sent cards. I read everything and for those who know me best, they know I keep everything as well, being the not-so-little pack rat that I am. Consistently throughout the 2 years post transplant, I would go back and read emails I had kept because they were such great reminders of the experience we shared in this email group.
Back soon.
Always…
Live Life. Love Life.
Geoff
