I'm so proud that they raised well over $2,000 (and still counting), and I'm equally grateful for all of my friends who contributed to the cause.
I feel compelled to reprint my Dad's story of survival in case anyone stumbles to this site on a google search, looking for support, and hope, if they are dealing with something similar. Read on, it'll be worth it...
“You are The Wind Beneath My Wings”
September 8th, 2009 was a bittersweet day for me. It started out as a day of triumph; I had beaten a serious health issue and this day was to be the final step in my recovery. It was a beautiful fall morning and we were making the 100+ mile trip to the Cleveland Clinic where I was scheduled to have a pacemaker-defibrillator implanted that morning, this the final step in my getting back on track after a bout with congenital heart failure. Nancy and I talked about how fortunate we were that we were led to the Cleveland Clinic and how they so quickly diagnosed my condition and turned the situation around.
After routine blood work that morning we met with my lead Doctor David Taylor, who already had the results of that morning’s blood work on his computer. I could tell from his body language that he was perplexed. He turned around and said he had great news . . . my heart had improved so dramatically that I no longer qualified for a pacemaker! WOW, I thought. I'm totally cured and we can go back to Erie and celebrate.
But just as quickly as Dr. Taylor made that pronouncement he added that he did however, see some numbers in that morning’s blood work that ‘puzzled’ him and that he had already made arrangements to have me sent to the Clinic’s Taussig Center where they specialized in hematology. I was feeling fine and assumed that the ‘numbers’ were surely an aberration. I was still flying high until we reached the Taussig Center several blocks from the CC Heart Clinic. We rounded a corner and were greeted by the sign . . . ‘Cleveland Clinic Taussig Cancer Center’. The wind beneath my wings totally disappeared and both Nancy and I were overcome with apprehension, fear, anxiety and emotions I didn't realize I possessed. Dr. Stephan Smith was waiting for us and as he began a cursory look at his computer account of my blood work from earlier that morning he simply said “OK . . . we're going to start by having you transfused with a little more blood”. There was not much else said and within minutes I was in another room being infused what ultimately turned out to be 3 units of blood! My tank was really low. During the infusion I thought that surely this came about as a result of what I had just been through over the past year rebuilding after the heart problem and that I would be released after my tank was topped off.
More blood work . . . and a brief wait. Dr. Smith read the new results and said, “Ah . . . this looks better” and just as quickly he added, “ . . . you really shouldn't be here!” I assumed that he meant that they should have taken care of this matter back at the Heart Clinic. Curious about the comment I asked what he had meant. He said that the results of the earlier blood work that morning indicated numbers in one area that were off the bottom of the chart for being minimal to stay alive! I think that what he meant was that I should be dead! Dr Smith continued by saying that he didn't know the reason for the ‘off-the-chart’ numbers but that he was admitting me again and scheduling more tests.
By the end of that day I had so many tests that I can no longer remember them all. Bone chip from the hip, bone marrow sampling, heart cauterization, MRI, CAT, XYZ . . .
Nancy returned to Erie late that day and by midnight they had finally put me in a room and left me alone for what turned into a totally sleepless night of anxiety.
The following morning Dr. Smith came in to report on the initial findings, which at the moment were inconclusive. More tests, X-rays, blood work etc. . . . Nancy arrived from Erie shortly after noon, just as Dr. Smith came in again for his next report. This time he said that they were going to release me! I thought that my earlier suspicions of this whole thing being an aberration had been confirmed and I was good to go. Not exactly so. Dr. Smith handed me several prescriptions for testing and transfusions, should I need them, to be done in Erie, until they get the results of the bone and marrow biopsies, which would be a couple of days longer. He went on to say that what they saw so far looked like a type of blood cancer but they couldn't be certain. He qualified that further by saying that they had absolutely ruled out leukemia. (For what that’s worth.)
Indeed I did need more transfusions the following 2 days all done in Erie but under the monitoring and direction of Dr. Smith from his Cleveland office. Three days after that fateful day of September 8th, Dr. Smith phoned and asked that I return to Cleveland the following morning; they had gotten the results of the biopsies.
This would be a brief meeting. Dr. Smith said that his initial suspicions had been confirmed . . . . . I had a rare form of blood cancer, incurable but treatable! The euphoria of the trip to Cleveland the morning of September 8th had now turned into a death sentence, or so I felt at the moment. Dr. Smith went on . . . “Very little is known about Waldenstrom Macroglobulinemia, and the known treatments are largely trial and error.” He offered that there was one drug that works well in some cases of this cancer and that it appears to be my best option short of doing nothing in which case the prognostication would be about 2 years at best. He went on to explain that the chemotherapy drug Rituximab, in combination with steroids, would be his advice. The option of doing nothing is certainly not good so we agreed to start the chemotherapy regimen.
Nancy and I had been coordinating a European river cruise for a large group, to begin soon after this visit. I told Dr. Smith that there was no way I was going to let those people down and that I would be going on the trip. He had wanted to start the chemo treatments almost immediately. Although he strongly advised against my prolonging treatment and traveling he eventually consented conditionally. He had a German doctor on the CC staff write a brief description of my condition plus scripts for blood transfusions and medications all in German. He cautioned against over exerting myself and wished us a ‘bon voyage’! Before leaving the CC that day Dr. Smith set up a schedule for the first of a series of chemo and steroid treatments to begin immediately on our return from Europe. The trip went reasonably well for me aside from weakness and lack of energy but I didn’t feel the need to use any of my German scripts while traveling.
From the moment that Dr. Smith first used the term Waldenstrom Macroglobulinemia, I spent hours researching the Internet for anything at all I could find out about this cancer, possible treatments, etc. I had printed out reams if information, researched support groups and organizations, etc. and had resigned myself to the fact that I was going to be a survivor of this dreaded disease. I was very aware that in rare cases the infusion of the chemo drug itself was known to cause death. However, the option of no treatment was certain death, which for me was a no-brainer. Let’s get on with it!
The first chemo infusion got off to an anxious start. It was to be an 8-hour affair and when the drip was started there were 2 RNs constantly in the room with their attention glued on several monitoring devices and screens. The flow rate was set very low at first and without any apparent reactions it was gradually increased after the first hour. Shortly after the increase in the flow rate I suddenly felt extremely cold and began to convulse badly. I recall the ‘code red’ going out and all sorts of action and attention instantly being focused on me. Dr. Smith got the word immediately and ordered the infusion stopped and an injection of something to counteract the reaction. This worked instantly and after a bit of excitement the Rituximab infusion was restarted, only at a much slower rate!
The following 8 hours were fairly mundane and I was released to go home with the caution that I would likely become quite exhausted and possibly start to lose hair. There’s not much hair to lose so that’s not going to be a problem and I could care less if the lawn doesn't get mowed or the leaves raked. The homestead of the past 40 years is starting to become a burden anyway.
The caution about the weakness thing was oh so right but I never lost a hair over the next few weeks. In the ensuing three weeks before my next scheduled chemo treatment there were more blood tests, a couple more transfusions and I gradually began to regain some strength and wanted to do things. I took this as a sign that the miracle drug was working but we wouldn't know for sure until my next trip to the CC for an in-depth examination, scheduled for late November.
It was a blustery pre-winter day when we went to Cleveland for the next exam and chemo treatment. Immediately on arrival you go through the routine dog-and-pony act of blood work, urine sampling, etc. and today was no different. Once again the anxiety set in as we waited almost an hour before being called in to see Dr. Smith. His demeanor seemed upbeat as he studied the results of the morning tests on his computer. (‘is he patronizing us’ . . . I had become a little suspicious, I guess.) I should have known better than to be suspicious of Dr. Smith. He is as forthright and sincere as any MD I've ever encountered. Then he rather excitedly said “WOW . . . look at this . . . “ and he turned the computer screen so we could see my progress in graph form. It was all uphill!!! The drug was working . . . and quite impressively at that. I sincerely feel that Dr. Smith was just as ecstatic as I, not knowing what to expect. (Do you believe in miracles?)
Each scheduled infusion of chemo was progressively easier and less time consuming and the progress chart continued on an upward trend. In March of 2010 I was scheduled for a final infusion. That morning at the CC started with the usual tests, etc. and a meeting with Dr. Smith before the treatment. This time I could read the excitement on his face as he quickly turned his monitor screen around to reveal the latest graph image of my progress with the line near the top of the screen! His only comment was . . . “From what I'm seeing I would like to tell you that you are cured, but we know that with Waldenstrom’s that’s not possible so I'm declaring you in remission!” That one word was the most beautiful word I've ever heard. Dr. Smith is quite young and he’s about to get married soon after this visit and I'm certain that this apparent success has added positively to his day, also.
Two more booster infusions since that day have further restored me to reasonably good health. Dr. Smith is now happily married and I have had plenty of time to reflect on my life and my good fortune especially over the past two years. Nancy and I have moved into a new condo where there’s no outside maintenance and I can sit and watch the grass grow!
I owe a deep debt of gratitude to so many people, doctors, my wife, my family, friends, etc. But foremost among these I can never repay the research and support organizations such as the Leukemia and Lymphoma Society for the work they have done and continue to do in developing treatments, programs and miracle drugs such as Rituximab. They have truly restored the wind beneath my wings . . . I am once again soaring with the eagles.
My most sincere and heartfelt thanks to each of you who have so generously donated to the Leukemia and Lymphoma Society ‘Light the Night Walk’, which funds this research and these programs. By donating in my name you are not doing this for me but rather in my honor. I have been saved. You are doing this for those who are less fortunate and for those who will be diagnosed with one of these blood cancers in the future in the hope that one day total cures will be found to completely eradicate these dreaded diseases. Together we can provide the wind beneath their wings that will lift them up to soar with the eagles!
A most humble and sincere thanks,
Paul E. Fischer, Survivor
PS: I am so proud of my wife and her efforts for captaining a fund raising team in my name for the annual ‘Light the Night’ walk for the Leukemia and Lymphoma Society. With your help her team has collectively raised more than $2,000 for the cause. If you have not yet donated but are so inclined I humbly beg you to consider by visit her web site at:
http://pages.lightthenight.org/wpa/ErieCo10/NFischer
Mom, Marty, Mark, Dad and Katie, before the walk.
