The mind the mind, the most powerful organ. How to harness this power, I could sure use more help there. The anticipation of things such as chemo treatment is so strong you can be physically sick even without the chemicals. Now, as I have mentioned in this blog previously, every trip is new adventure and this time is no exception. I was not sick before hand but was sick immediately after chemo but really before its effects were fully felt by my body. Go figure. Anyway the mind is no joking matter. It would sure be wonderful to harness that power more effectively. Now, day 2 after treatment, I can feel the iron weight being lifted from my psyche (thanks to minds wonderful ability to quickly diminish whatever is awful that we endure). I can actually feel a lighter sense slowly seeping back into my soul. IT IS OVER (at least this part of the journey).
My last CT scan was after treatment number 3 and it showed that I was in a complete response according to the doctors. What does that mean you may wonder? That is a good question. This game, like so many others is partly one of semantics, one with a new language that you have to learn before you can understand what the heck they are talking about. So important terms are "complete remission", which means that the tumors have shrunk to the point that CT or Pet scans cannot see them anymore or that they are so small that they are indistinguishable from normal lymph nodes. This is where I am today. It is a good place to be that is for sure. What it is not is a "cure", which essentially is not a part of the language of cancer. The technology for detection is not perfect and the scans that are used to gauge success can only see growths that have millions of cells in them. So the bottom line is that I sit in the netherworld between complete remission and cure.
This is why the trajectory of therapy now heads toward what is called "PBSCT" (peripheral blood stem cell transplant). In the old days this was called a bone marrow transplant, but has evolved and today bone marrow is not used. On October 15th I have an appt with the transplant team at Stanford to see if I will qualify for this additional therapy. I will learn more of the details at that time of what the procedure involves in 2008.
This past weekend I attended the Lymphoma Research Foundation annual North American Educational Forum for patients that was in San Francisco. This was very worthwhile. There were doctors from across the country that presented the latest in research and treatment options. The conference is only for lymphoma so it is more targeted toward my situation. There are 74000 new cases each year in the US and the rate is increasing. There were statistics shown for the world and the US numbers are much greater than any other region. The rate of lymphoma per 100000 population is > 5 in the US. The highest outside the US is somewhere nearer to 1. This certainly gives you pause to wonder why? What the heck are we doing that is harming us so much more? There is a big effort to try to figure out why, but basically researches don't know. Theories range from the environment to pesticides.
My disease gives new meaning to the term rare. Of the 70K+ new cases, ~ 90% are B cell varieties and the remaining ~ 10% are T cell varieties (what I have). Within that 10% ALCL (specifically what I have) accounts for ~ 3%. Within that 3% ALK- (specifically what I have) is even a much smaller percentage. So what this all means is that there may be a few hundred per year in the US. All this leads to the inevitable conclusion that this sucker is rare and understood poorly. I can report that the doctors that see this the most and work with it the most agree.
At this weekends forum there were at least 500 lymphoma patients and survivors in attendance. There were a total of 3 T cell patients. WOW.
I did learn also that it is the expert "opinion" of these doctors that the transplant is probably a good idea.
Enough about me and my condition, I am looking forward to the next month or so of my body having time to heal and feeling normal again and going back to the gym.
Do you know where your money is today? Are you better off today than you were 4 years ago? 8 years ago? What a mess!!!
There was an interesting article about the history of previous bailouts in the US. I am going to try to attach that to the blog, wish me luck. I have not figured out how to do it yet. The article goes back to Alexander Hamilton and his interventions in the late 1700's. The point is that there is a long tradition of public funds being used for bailouts. One has to wonder if this is such a good idea. But then there is the possibly worse impact if it is not done.
Another observation I would like to make is Doonesbury. My favorite comic strip of political comment. If you don't read it, take a look. Amazing that after so many years he can be so razor sharp. I want to post one strip if I can figure out how. I used to read the comics but stopped for many years and have only started again this year. This strip is like a recognizable link to my past that is timely today. How refreshing.
To all that are offering their support and friendship and prayers to Carol and I during this journey I want to express my continuing gratitude. It means a great deal to me and in my more emotional moments it makes me cry with appreciation and thankfulness at having such support. Please feel free to leave comments.
Rich
Wednesday, October 1, 2008
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