Who can believe that it is the 22nd of July, I definitely can’t. There is only 5-6 weeks left in the summer, scary thoughts, it will be XMAS before we know it. Sorry to advance us out of the summer like that but yesterday I had a look at a calendar and was quite surprised to see just how many days have past since my Transplant.
Along with my calendar review yesterday I started to think about my progress over the past 100 days, specifically my physical progress. I did a little comparison between my activity in May, shortly after being discharged, and my activity today and really there isn’t much of a difference. Many have said they think I have made remarkable progress, which may be true but as far as miles walked, or actual measurable distances and finite targets, I really haven’t. Actually I think I am walking less frequently and for shorter distances than I was a couple of months ago. My initial reaction was that of frustration but only my initial reaction, as I do realize that there are many elements influencing, or limiting, my physical conditioning and one of them is drug related. In conversation with Dr. Scully yesterday and through some thinking on my own I realized that my physical rehabilitation will not be a smooth flowing continuous process, but more an inconsistent collection of ups and downs. Kind of sounds like a description of my last 8-9 months. Presently there are two major factors influencing this situation, as far as I can tell anyway, one being the drugs as I mentioned and the other being my energy levels. The drugs, most significantly the Prednisone affects my muscles and skeletal system, as in it weakens both thus making any attempts to build muscle extremely difficult. The other, my energy, I have mentioned several times. All signs from the past three months indicate that this will be an unpredictable and inconsistent element of my situation for the next while. Doc’s and Patients alike have told me that this energy phenomenon lasts for around a year, as I have said there will be good days and there will be bad days.
Knowing the previous information, as I do, I am a little more comfortable with my lack of progress and as with seemingly every single element of my situation “patience is key”. I am amazed at how many times I have said and written those words over the past months but they appear to be more accurate each time I write them. If I had only a few words to tell someone who is about to encounter a challenge similar to mine they would be the words I would pass along. It really is amazing to see people in clinic waiting rooms around the hospital, most times I can tell by how they sit whether or not they are comfortable with their situation and possess ample patience to allow them to deal with the many things that accompany a situation like ours. Through talking with fellow Leukemia Patients I have discovered that there is a very distinct correlation between patience and comfort. Many Patients who are uncomfortable, frustrated, mad, or any other negative feeling/emotion, are the same Patients who have little or no patience for their situation. I feel this phenomenon can be applied to many other life situations, actually I feel many of my observations relating to my situation and my Challenge can be transferred and applied to other life situations. Describing those situations, and delivering the messages of how to recognize and tackle more general challenges encountered in everyday life will be a big part of my future. Plans for that future are in progress, actually in the next week or so I will hopefully get a serious start on planning for my next 6 months and ultimately next few years.
Clinic news, yesterday I started a new drug called Eprex, for short, it is designed to bring my hemoglobin up to normal levels. It is currently floating around 105-110 and has been there for the past 2 months and should be around 160. Dr. Scully feels that my muscle pain and cramps may be due to my low hemoglobin, this is not something that is common or uncommon just some people tolerate low hemoglobin, some people don’t. During the first three games I would get very bad headaches when my hemoglobin would drop down around the transfusion borderline of 70, this is the same principle as I understand just a different symptom. I get the drug in the arm, yes it gets there through a needle, 3 times a week for about a month, if it is going to work apparently we will see some movement in the first 2-3 weeks. We’ll see how it goes. My Prednisone is still dropping, 25mg/day this week and all other things are going well.
Hope you are enjoying the summer, there’s only a few days left remember. ha ha ha
Take care,
Geoff
#4
