If I had only read the bottom of the page....Yesterday marked 1 ½ years out from transplant. Wow, it is hard to believe it has been that long. It’s strange, but somehow during the transplant and for the 100 days (where I got the name for my blog) I spent in isolation after, I don’t think it had really sunk in to my brain that I could relapse. I was so focused on surviving the transplant that I never really thought about relapse. I think I just wanted to believe the transplant was the cure, hands down, end of it all, cancer gone forever. But, eventually I came back to reality and once I started feeling better the truth of my situation sank in. Relapse can happen even after transplant.
Once things sorta sunk in is when I began to scour around for survivor stories. My first stop, the internet. I bought many books written by survivors. My first read was Evan Handler’s (the actor form Sex and the City, Charlotte’s husband) tome “Time On Fire” about surviving AML in the late 80’s. It was a rough read, very raw, but I loved the fact that he is still here more than 20 years after his transplant. The rest of the books I ordered are still on my shelf. I don’t know if I will ever read them. They are hard to read. It is like reliving what I went through. But, they are emblematic to me of the fact that people do survive. I also turned to other survivors blogs. I have followed many. I’ve even connected with a few of the people behind the blogs. This can be tough too. Some don’t survive. I cried so hard when Jasmina and Lauren Ashley died and was so torn up when Nick Glasgow passed away. It breaks my heart. I know what they went through. I know the pain, the hell. To go through all that and to not survive….it is not fair.
While life has pretty much returned to “normal” I can still feel the rawness of the whole experience. It really is just below the surface. One little scratch and it all comes out. Lately my thoughts have been drifting back to my day of diagnosis. It is emblazoned in my mind. I had just returned from a development trip to China. I felt lousy during the whole trip. Before I left for the trip, I felt like I had a cold coming on. I was so pissed that I had to travel all the way to China with a cold. I felt so bad while in China I actually went to a hospital over there (Ekk!). I thought I had a sinus infection. They did too. My glands were so swollen and my gums were swollen too. I was waking up with night sweats. I had an almost constant headache. They gave me some antibiotics and I went on my way. They did nothing to make me feel better. I promised when I got home, if I didn’t feel better, I would go to my doctor. I never felt any better and three days after I returned, I went in to see my doctor. I told him over the phone I thought I had some kind of sinus infection. So, when I went in I didn’t expect them to draw blood. It was drawn before I even went in to see him. He just did it as a course of routine since I hadn’t been in to see him in quite some time. The next day, as I was trying to figure out what to make for dinner, I received the call that changed my life. My doctor asked me to come in immediately but wouldn’t tell me what was wrong. I knew it was bad. Something inside me told me it was cancer. Even when I went in to see my doctor, he wouldn’t tell me. He just told me not to go home but rather to go right to the emergency room. Even when I got to the emergency room, it took quite some time for them to tell me what was wrong. All I had was the blood draw results from yesterday to look at that my doctor had given me. I remember staring at the numbers as I waited for my husband to arrive at the emergency room, hoping they might tell me something. Ironically, if I had bothered to look below the numbers at the bottom of the page it read “Rule out M4 acute leukemia.” My answer to what was wrong with me was right there on the page. I noticed this months after the transplant when I was going through all of my papers. Unbelieveable. How did I miss that? That very night I was admitted to Mass General. I never went home and spent the next month in the hospital. Some days I truly wonder how I survived. Three months in the hospital??? Bam, bam, bam! How the hell did I do it?? But, in the end, what choice did I really have? I didn’t…so, I did what I had to to survive. And, here I am, 1 ½ years out from transplant and doing well. Phew…
Once things sorta sunk in is when I began to scour around for survivor stories. My first stop, the internet. I bought many books written by survivors. My first read was Evan Handler’s (the actor form Sex and the City, Charlotte’s husband) tome “Time On Fire” about surviving AML in the late 80’s. It was a rough read, very raw, but I loved the fact that he is still here more than 20 years after his transplant. The rest of the books I ordered are still on my shelf. I don’t know if I will ever read them. They are hard to read. It is like reliving what I went through. But, they are emblematic to me of the fact that people do survive. I also turned to other survivors blogs. I have followed many. I’ve even connected with a few of the people behind the blogs. This can be tough too. Some don’t survive. I cried so hard when Jasmina and Lauren Ashley died and was so torn up when Nick Glasgow passed away. It breaks my heart. I know what they went through. I know the pain, the hell. To go through all that and to not survive….it is not fair.
While life has pretty much returned to “normal” I can still feel the rawness of the whole experience. It really is just below the surface. One little scratch and it all comes out. Lately my thoughts have been drifting back to my day of diagnosis. It is emblazoned in my mind. I had just returned from a development trip to China. I felt lousy during the whole trip. Before I left for the trip, I felt like I had a cold coming on. I was so pissed that I had to travel all the way to China with a cold. I felt so bad while in China I actually went to a hospital over there (Ekk!). I thought I had a sinus infection. They did too. My glands were so swollen and my gums were swollen too. I was waking up with night sweats. I had an almost constant headache. They gave me some antibiotics and I went on my way. They did nothing to make me feel better. I promised when I got home, if I didn’t feel better, I would go to my doctor. I never felt any better and three days after I returned, I went in to see my doctor. I told him over the phone I thought I had some kind of sinus infection. So, when I went in I didn’t expect them to draw blood. It was drawn before I even went in to see him. He just did it as a course of routine since I hadn’t been in to see him in quite some time. The next day, as I was trying to figure out what to make for dinner, I received the call that changed my life. My doctor asked me to come in immediately but wouldn’t tell me what was wrong. I knew it was bad. Something inside me told me it was cancer. Even when I went in to see my doctor, he wouldn’t tell me. He just told me not to go home but rather to go right to the emergency room. Even when I got to the emergency room, it took quite some time for them to tell me what was wrong. All I had was the blood draw results from yesterday to look at that my doctor had given me. I remember staring at the numbers as I waited for my husband to arrive at the emergency room, hoping they might tell me something. Ironically, if I had bothered to look below the numbers at the bottom of the page it read “Rule out M4 acute leukemia.” My answer to what was wrong with me was right there on the page. I noticed this months after the transplant when I was going through all of my papers. Unbelieveable. How did I miss that? That very night I was admitted to Mass General. I never went home and spent the next month in the hospital. Some days I truly wonder how I survived. Three months in the hospital??? Bam, bam, bam! How the hell did I do it?? But, in the end, what choice did I really have? I didn’t…so, I did what I had to to survive. And, here I am, 1 ½ years out from transplant and doing well. Phew…
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