After I received the results of that fateful blood test in March of 2002, I spent hours on the computer, searching the internet, trying to figure out what a high lymphocyte count could possibly represent. The first things I found related to leukemia or lymphoma, so I kept searching, hoping to find other, less serious possibilities. I found many reasons for a high lymphocyte count, but when the results of my retest came back the same, and the immunophenotyping of my blood came back with a diagnosis of Chronic Lymphocytic Leukemia (CLL), I knew searching for other possibilities was a waste of time.
Of course I couldn't let other possibilites disappear from my mind completely, so I did keep searching, but I began to concentrate my efforts more into investigating CLL and other leukemias and lymphomas. I was very much surprised by the wealth of information available on the internet. I was also surprised to discover the number of different types of leukemias and lymphoma, and is eventually how I determined that I likely didn't have CLL (which I discussed in a previous post), but rather Mantle Cell Lymphoma (MCL).
Even when I was confident of my diagnosis, I still continued to search the internet almost constantly, looking for that miracle cure I suppose. I joined several news groups relating to leukemias and lymphomas, absorbing what others had learned, and posting what I had learned. I went to conferences, and wrote to various doctors in the US and around the world to discuss different reports they authored, to get their opinions. It pretty much consumed my life.
It still pretty much consumes a good part of my life, although I have cut way back on reading of newsgroups and doing research. I still belong to all the same news groups, and constantly receive emails, but I only briefly glance at the subject line, and pick and choose which emails to read.
But it was only about two or three days ago, when I read a post on the CLL ACOR list where someone with an indolent variant of CLL wanted to find out about the cost of going to see Dr. Kipps at the University of San Diego. She wanted a consult on the best treatment available when treatment became necessary.
It was this email that made me realize, that with the exception of Rituxan in 1997, there has not been any real break throughs in the treatment of cancer. As was the case when my father was diagnosed with leukemia over 20 years ago, treatment still consists of infusing deadly chemicals into the body, only the names of those drugs have been changed to protect pharmaceutical company profits.
Sure there have been some clinical trials using targeted vaccines, and there have been some advances in the use of stem cell transplants (SCT), but both still require pre-treatment with high dose chemotherapy prior to treatment. And there has not been a lot of success in obtaining a cure. And the potential for acute graft vs host disease (GVHD) after a transplant is of grave concern.
And the fact still remains that whatever treatment is eventually decided upon, it is not based on any hard and fast information that one treatment selection is better than another. Treatment decisions are really just a best guess, based on current available information. And since we are all different, and will likely react differently to the same treatment, there are no bad decisions, and good ones can only be evaluated after the fact. And if there is some major break thru, we will hear about it. We won't have to wait for our doctor to tell us about it, we'll likely tell him/her about it.
So what is the point of all this? I'm not really sure, since I do like to ramble, but I think it was meant to wake me up. We don't need to let our disease consume our lives. We are all fortunate in at least one regard, we don't have to wait for the future to arrive to do the things we have always planned. Our future is here, now. Let's not let it get away!
As Becky would sometimes tell me, under other circumstances, there really is such a thing as TMI (too much information).
Fortunately I still have some interests to occupy my time, like golf and bike riding. I just need to start letting those interests consume more of my time, which I vow to do after I finish this post.
I also started another blog, dedicated to the establishment of universal health care in the US, so that I can quit work sooner, and not have to worry about health care when the time comes.
Of course I couldn't let other possibilites disappear from my mind completely, so I did keep searching, but I began to concentrate my efforts more into investigating CLL and other leukemias and lymphomas. I was very much surprised by the wealth of information available on the internet. I was also surprised to discover the number of different types of leukemias and lymphoma, and is eventually how I determined that I likely didn't have CLL (which I discussed in a previous post), but rather Mantle Cell Lymphoma (MCL).
Even when I was confident of my diagnosis, I still continued to search the internet almost constantly, looking for that miracle cure I suppose. I joined several news groups relating to leukemias and lymphomas, absorbing what others had learned, and posting what I had learned. I went to conferences, and wrote to various doctors in the US and around the world to discuss different reports they authored, to get their opinions. It pretty much consumed my life.
It still pretty much consumes a good part of my life, although I have cut way back on reading of newsgroups and doing research. I still belong to all the same news groups, and constantly receive emails, but I only briefly glance at the subject line, and pick and choose which emails to read.
But it was only about two or three days ago, when I read a post on the CLL ACOR list where someone with an indolent variant of CLL wanted to find out about the cost of going to see Dr. Kipps at the University of San Diego. She wanted a consult on the best treatment available when treatment became necessary.
It was this email that made me realize, that with the exception of Rituxan in 1997, there has not been any real break throughs in the treatment of cancer. As was the case when my father was diagnosed with leukemia over 20 years ago, treatment still consists of infusing deadly chemicals into the body, only the names of those drugs have been changed to protect pharmaceutical company profits.
Sure there have been some clinical trials using targeted vaccines, and there have been some advances in the use of stem cell transplants (SCT), but both still require pre-treatment with high dose chemotherapy prior to treatment. And there has not been a lot of success in obtaining a cure. And the potential for acute graft vs host disease (GVHD) after a transplant is of grave concern.
And the fact still remains that whatever treatment is eventually decided upon, it is not based on any hard and fast information that one treatment selection is better than another. Treatment decisions are really just a best guess, based on current available information. And since we are all different, and will likely react differently to the same treatment, there are no bad decisions, and good ones can only be evaluated after the fact. And if there is some major break thru, we will hear about it. We won't have to wait for our doctor to tell us about it, we'll likely tell him/her about it.
So what is the point of all this? I'm not really sure, since I do like to ramble, but I think it was meant to wake me up. We don't need to let our disease consume our lives. We are all fortunate in at least one regard, we don't have to wait for the future to arrive to do the things we have always planned. Our future is here, now. Let's not let it get away!
As Becky would sometimes tell me, under other circumstances, there really is such a thing as TMI (too much information).
Fortunately I still have some interests to occupy my time, like golf and bike riding. I just need to start letting those interests consume more of my time, which I vow to do after I finish this post.
I also started another blog, dedicated to the establishment of universal health care in the US, so that I can quit work sooner, and not have to worry about health care when the time comes.
Comments
As a rider myself (road and mountain) I congratulate you on your ability and dedication - altho as a CT resident I am also jealous of your weather if not your traffic.
So, please enrich us w the occasional post on the patient side of things and poke holes in our intellectual arguments, but most of all never let us forget that we're talking about people here.
Best - Joe