I once helped a man by the name of Adrian Sudsberry who had two different types of Leukemia, he also had GVHD. He was a news journalist in England. He would post on a site called Baldys Blog and there were a lot of people trying to help him, one included Zavie Miller who I had the opportunity of helping Zavie. This was when Zavie first started his Zavies zero list.
Here are several things that I posted on Baldys Blog... Marty Gartenberg | February 5, 2008 2:13 AM <http://baldyblog.freshblogs.co.uk/2007/10/treating-chronic-graft-versus.html#comment-484814> | Reply Hi Adrian, I guess that you already heard all about me from my good friend Zavie Miller. Yes, I have the proud distinction of being number 1 on his zero list. But now I have to tell you something, and that is yes, I also have/had/have/had GVHD going on now for the last eighteen years, and would you believe that I love each and every second of it. No, I'm not crazy, but I am still alive after going on those eighteen years post the most awful bone marrow transplant you can ever imagine. In those days I had to live in a very small plastic bubble called a laminous air flow chamber that measured five feet by nine feet, and I had to exist in there for more then seven months. In all of this time I learned that having GVHD (of the gut, liver, heart, lungs, eyes and skin) meant very little to me because I was still alive to have that GVHD. As I became more advanced with it I would just think about something that I wrote at the time for lack of anything else to do. What can one do in a plastic bubble other then writing and reading? I wrote something called "The Window" and it is a true story, and several years later I found it on the internet, plagirized. This really bothered me because of some of the things this person/s said, but no matter because I know what I wrote... I am enclosing it so that you may know that as long as you are alive there is always hope. I only ask that you don't let that GVHD rule your life, but rather that you rule it, and you will see that you will be much better off by doing just that. I wish you much health and happiness because I do know what you went through and what your now going through, and you really deserve health and happiness from now on... GOD has blessed you (and me) just by giving you (and me) a beautiful donor that has done just that... Saved our lives! You mark my words, in a few years your going to be able to put all of this behind you as I have, and you will go on to lead a wonderful productive life. GOD bless you as he already has and will keep on doing so... Marty The Window This is a true story that took place more then eighteen years ago. There were two men in the cancer ward of Mount Sinai Hospital in New York City. They were in Ward KCC-6 North, which was at that time the cancer ward at that hospital. Both of these men were suffering from the end stages of Leukemia. They were there basically to die. One of these men had his bed right next to the only window in the room. The other one was across the room and had no access to the window. The man by the window would always tell the other man how beautiful it was looking out of that window, and let him know what was happening outside. He would talk about the beautiful skies, and how all of the little children were playing in Central Park. He would tell about the green grass, and the people who were having a picnic, and the dogs that were running around, as well as the ice cream truck with the man selling ice cream pops to the little children, and the hot dog vender also selling hot dogs with mustard and sour kraut. He would tell the other man that he would be able to see all of this for himself once he was healed. This went on for about two weeks, and one morning the nurse came into the room as she usually did, and presented these two men with their sponge baths. She first went over to the man who was by the window to find that he had passed away in his sleep. She then covered him up and left the room for a couple of minutes. When she returned, there was a doctor with her. This was a fairly new young doctor who would pronounce the man dead, and at that particular time, 8:40 a.m. even though he had obviously passed away some time during the night. The other man across the room with tears running down his cheeks became quite depressed at seeing his roommate wheeled out of the room, declared dead. He thought about how this man would always try to make him happy with him describing all of the nice things he was able to see outside. Later on that day the nurse returned and made up the bed in the room that was now unoccupied. The man in the other bed asked if by any chance he would be able to be put by the window. The nurse was a very kind and compassionate woman besides being a very competent nurse, and she wheeled him over. Although this man was unable to prop himself up to see the outside because he had recently had his Spleen surgically removed, he tried but finding it was just impossible. The next day came, and he again tried and although he was in a great deal of pain he managed to very slowly prop himself up and peer out of that most appealing window. He was absolutely shocked at what he was able to see, or to put it another way, what he was unable to see. There was nothing there but a brick wall! He wondered why that man would always tell him about what a beautiful world it was out there when in fact there was nothing but that brick wall. At about that time the nurse came in with his sponge bath. He immediately without any reservation asked her why the man would always tell him about what was happening outside when in fact he wasn't able to see anything. The nurse then told him that he was correct. The man who had been by that window was in fact not able to see anything because he was blind. The man then realized that the other man was trying to make him feel good, and try to become well once again. And, as it turned out that other man did in fact return to health but not until he was able to receive a Bone Marrow Transplant. There was a donor found, his sister, and although he had to live in a plastic bubble for many months without having a window in it he would also be able to see all of those wonderful things that this world has to offer. In effect the man who passed away prepared the other man so that he would be able to tolerate something that no one could ever imagine happening to anyone. I know all about this story because I was that other man, and without this blind man's help I would have never been able to really “see� what the other man saw, even though he was totally blind. I gladly wrote this story to be able to make others understand that there is hope even though you cannot see any hope. There is something to be learned by all of this, and that is to never give up hope. Most of us are blind to this fact, and we can only see what we want to see. Sometimes it takes someone that can really see what is out there even though he is blind. Or was he? Authors' note: I wrote this story on May 21, 1990, which I consider my second birth date, because that was exactly one year after my Bone Marrow Transplant. My actual birth date was on May 21, 1944. It is my wish that whoever reads this will take comfort in the fact that there is a beautiful world out there, and they must have hope in order to really be able to “see� it. Martin Gartenberg Marty Gartenberg | February 8, 2008 8:50 PM <http://baldyblog.freshblogs.co.uk/2007/10/treating-chronic-graft-versus.html#comment-484815> | Reply Hi Adrian, I hope that your doing well today, and I just wanted you to read something that I once wrote, especially the very last line. This is part of a book that I am in the process of writing, and my book is always ongoing. This part goes back about eighteen years ago, and was at the time that I lived in that plastic bubble. Anyone that has or had cancer can always be able to really help themselves it they really believe in that very line and what it means... *********************************************** How well I learned to do things that I could never even think that I would ever have to do. I had no other choice; I was fighting for my life! Since there was no running water, or any toilet facilities or even a sink in the L.A.F. unit, I had to learn how to be able to survive without any of them. People never even give any of this a thought because a sink or toilet is commonplace, and taken for granted. The only water was one gallon of sterilized, warm water in a sterile pan that was sent in every morning so that I would be able to try and give myself a sponge bath. There was also a sterile wash cloth and a pair of... well, it must be known by now everything that went in there had to be operating room sterile, pajamas. For some reason there was always a button missing and that was usually in the crotch area. I would run in place with my eyes closed, and my mind wide open. I was for that period in time in Central Park watching all of the things that blind man told me about. I would not even know that I was sweating through my hospital gown, or was about to completely collapse. Just at that very time I opened my eyes to notice that all of the nurses that were on the ward were marching in place with me right outside that plastic bubble I was confined to. As one person by the name of Adam who I helped go through this nightmare many years later said that those nurses were all marching to Marty's music. He, his mom (she asked me when I am going to start this biography) and his brother all became very close with me, and I still speak with her every once in a while. I will speak about all of them later on. The nurses that were marching to “Marty's� music all started to applaud for me, and it brought back memories of me being in the room with Dr. F, and all of those new medical students that were also applauding for me. It's really funny how things like that seem to relate to other things that you think that you would forget, but I guess that I didn't, and won't ever forget. This is just another reason that I go back and forth in time to try and explain what I remember at the particular time, and it's relationship with whatever I think about. There was a very special male nurse that was in charge of giving me my Chemotherapy. He was originally from the Philippines, as most of all the other nurses that were working in the cancer ward, especially in the transplant unit. These were very compassionate and caring professional people. I remember that I used to call him “The Sergeant� because he was very strict. There was only one way to give me my Chemotherapy, and that was his way. There was only the way that he dictated any of the things that I needed to be given to me, and I had to also do everything his way. In the long run I have to give him a lot of credit for doing everything just the way they should have been done. Everything had to be either his way or his way, and there was no deviating from that. He knew exactly what was necessary, and when it had to be done. At first I really disliked him, but as time went on I really loved him for the tender care he gave me. After a few days on Chemotherapy I thought that I would loose all of my hair. I looked at myself in the plastic and it was still there. I at first thought that maybe it wouldn't fall out. Then I decided to take a nap, and when I awoke I thought that I saw some hair on my pillow. I looked closely and it surely was my hair on that pillow. I touched the top of my head and gently pulled at some of my hair, and there it was in my hand. At first I felt badly about my hair, and knew that it was the Chemotherapy starting to work. I tried going back for another nap but was so upset that I couldn't. I again felt the top of my head and out came some more hair. I finally came to realize that I had no control about it, and decided to help it along. I put both of my hands on my head and just started pulling everything that would come out without hurting myself. I would say that more then a third of it came out at that time. The rest came out the next day. In fact every strand of hair comes out of every part of my body in the following two days. I was resigned to this fact and just let it do what it had to do. At first it was embarrassing, but that was the least of my problems. About two days later I developed the worst mouth sores that I could ever imagine I could have. It was called mucouscytes, and proved to be the worst part of the entire procedure; at least it was for me. As I found out later on I wasn't the only one. The male nurse had told me to swish my mouth with something called Mycostatan, which to me tasted like rotten bananas. It was an anti fungal agent that would have probably helped those mouth sores from getting worse. Since it made me immediately throw up whenever I tried using it I decided not use it. This proved to be something that I would deeply regret, and paid dearly for it. Although it may not have helped because most people that were given high dose Chemotherapy did develop it in some way or another, most would have it as bad as I did. There were times that I had wished that it were all over and I was dead. The pain was so severe that I had to be started on a Morphine drip. This made me hallucinate, and at times I would think that I would see snakes and roaches crawling around all over the floor and myself. There was also a sterile mop handle that had to be in there with me. Every morning in came a specially dressed and gowned cleaning person that would put a Petri dish on the table behind me, and completely clean the L.A.F. using that mop handle and a sterile mop head that was wrapped in two striped covers. One was blue, the outer one, and the inner one was pink. If the inner one changed color then it wasn't sterile and had to be thrown out of the L.A.F. unit. She would then mop the floor, and use special kinds of liquids that would be able to make the unit as sterile as possible. That Petri dish would be taken out every morning and examined for any cultured bacteria. When the Morphine was given to me I also thought that the mop handle was very large snake. Even with all of the morphine I severely suffered, but one day that bone marrow coordinator I spoke of earlier on came in all suited up (Sterile gown, surgical gloves, mask, booties, sterile shower cap) She sat beside me and held my hand through those sterile gloves, and looked into my eyes and said these three words... “It's only temporary� I never forgot those consoling words to this day. This was her way of letting me know that there was indeed that light at the end of what seemed at the time a never-ending tunnel. Even though the pain was so bad I would just put my mind in that other place my blind friend had always told me about. Yes, I suffered in terrible pain, but I made it not hurt anymore even though it did. It is kind of difficult to explain. I guess that you just have to go through something like that to know what I mean. I knew now what was meant by your mind controls your body... 18,s Marty Gartenberg -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
