The rest of my January apt..

After my hematologist and I talked, he left the room to get my blood work results. As normal he walked in, sat down and explained everything looks good, blood looks good. O.K. great, and lets go, but no! He went on to say, "Well the computer reads immature blood cells." I was easily rattled by this term, immature/abnormal cells all mean one thing, cancer. He probably noticed the drastic change in my expression as I repeated his statement. He explained, "The computer reads the blood, but I look at it also, and there were no signs of abnormalities." So basically the computer is wrong, but why would the computer report immature blood cells, if there were none there. These thoughts ran through my head as I quickly tried to retaliate with an intelligent question. All I could come up with was, "How many patients go on and do not get full blown Leukemia?" Not my best, I know, but under pressure I would say pretty good. He replied, "Mostly all, the computer is wrong sometimes." I was satisfied with that and left the office happily, normal.
As I called my husband, and relayed this information, there seemed to be a long, uncomfortable silence. I asked what was wrong? He responded, "I have been told my whole life that computers are always right and in this case I have a hard time believing that the computer is wrong." I went on to explain, that if there was something wrong, really wrong, I would have been told. Surprisingly, this still did not sit well with my husband, it was quite a change from the normal, "Your fine, its not gonna come back."
Basically, I knew I was fine, I have experienced the opposite and knew that if my doctor noticed any speck of questionable blood he would have put in the hospital, and immediately began prepping me for a BMB. I was so happy to just be left alone, to walk out and drive home was all I needed.

January 25, 2011 Hematologist apt.

This was a routine visit, I had nothing serious going on and I wanted to get in and get out, no drama required. The doctor checked me out and everything was fine, I did talk to him about my chronic pain at the bone marrow biopsy sites and got yet another blank stare.
Apparently, there are no reports of pain after a bone marrow biopsy. The only findings reported are if the biopsy is done incorrectly. Well, I can tell you that the first five or six were not only done incorrectly, but they were completely botched. My biopsies (not the ones at Dana-Farber) took over an hour, and ranged up to 1hour and 50 minutes, that includes multiple entrance/exits which are torture, and repeats/do overs. Oh, and did I mention the fact that at one biopsy the doctor was doing such a lousy job, that of the umpteen doctors in the room watching me writhe in pain, one said, "Enough, I am taking over." Yeah, it was that bad a doctor couldn't even watch it go on any longer!
So when I mention pain at the sites, why am I hearing crickets!!! Am I really the only one with this chronic pain. I don't even get any pain meds after I have the procedures. Don't get me wrong, I am not looking for pills to pop. But, when I am told to take over the counter pain relievers that do not even come close to working I have to assume I need something stronger.
Why am I dismissed? Am I the only one with this problem?

A First Connection Patient

Through the Leukemia Lymphoma Society volunteer program I was connected with a young man, 31 years old, his name is John. He and his wife have two young children, his youngest is under 6 months old. He was admitted into a center of excellence for a stem cell transplant, his donor is a volunteer with a 10 out of 10 match.
I have not heard from my brave friend and I think about him everyday! I would like to send prayers and strength to John and his family that he continues to fight. Please God let him be OK, he just wants to get it over with and be home with his wife and kids.

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T.G.I. March

If I could of, I would of hibernated the entire winter! It was a rough one for me, and I did sort of hibernate, in my own way. After my allergic reaction to the flu shot, it was time to get into the holiday spirit. I wanted to do all the things I used to do, bake the cookies, get the gifts and try to make it another special holiday season. In the process, I became weaker, more exhausted and my hands began to shake. The holidays drained me, and I was not ready for the cold weather headed our way.
Soon, every single site where I was poked, pricked and dug into was exacerbated by the cold and damp weather. I felt rotten everyday, as chronic pain took over. I felt like a worn out pin cushion! At one of the last Boston trips I asked what the tingling in my hands and feet meant. I was told I had peripheral neuropathy, damage to the nerve endings, most likely due to the chemo/radiation. One cold winter night before dinner I was taken down, literally to the floor, unable to overcome the pain, tingling and weakness of this disorder. As time has passed I have noticed a lack of coordination and a cross of signals from my brain to my fingers. I can only hope this gets better, as the temperature outside rises.