Tribute to John

Today I learned a very courageous man has passed away. His name is John, he was 31 years old and diagnosed with AML M6 in October 2010. He has left behind a wife and two young children. His youngest was only three months old at the time of his diagnosis.
John and I meant through the First Connection program with the Leukemia Lymphoma Society. We were matched up because we are both parents in our 30's. I called him as a First Connection Volunteer to offer support.
He endured so much during his fight, induction, chemotherapy, high fevers, infections, not to mention long hospital stays away from his family. As he prepared for his first transplant his donor actually backed out on him. Sadly, when another donor was found John relapsed, just prior to transplant.
March 2011 he called me to share the great news that he would be receiving his new stem cells that evening, from yet another donor. I talked to him that day and reassured him that those stem cells would heal his body and blood.
Now, I pray for his family during this difficult time.
John put up a good fight and will be dearly missed. Rest In Peace my friend!

Not Rebounding

Since my last post things have changed, I don't know how but I was working out, feeling great now it's all going wrong.
April got busy, real busy, the kids had a week off and I did not rest enough. I had volunteered for a project for the girls dance class and was making bows night and day, for a few days before their week off. My youngest got sick before Easter and I got even more exhausted, feeling miserable I kept on going. Then it was time to plan my oldest daughters 10th birthday party. The day before the party I made an apt. just to have a blood test. The doctor called and reported I am more anemic than before, and whites are still down. My daughter had a great party here at the house but the Monday after I slept three hours during the day. Now it is Thursday and I am not rebounding at all.
This Wednesday I have a trip, my three year apt. I was told I may or may not have to have a bone marrow biopsy. (Not Helpful) The past two nights I have woken up sweating. I do not know if it was that I was warm, my menopause, or an official night sweat. Night sweats were so bad before my diagnosis I would wake up in a drenched t-shirt. But at that time I was so full of Leukemia that I had only months to live.
If I am going to relapse, will I feel it or will the doctors see it before the symptoms begin?

New Primary

I visited my new primary and I love him. I had just about given up on finding a primary doctor that can meet all my needs.
However, he was completely honest with the fact that I will face osteoporosis very soon, since my 39 year old body is in menopause. His words were, "Use it or lose it!" That gave me the motivation to get back on track with my exercise. I need to get back all the muscle I lost and build muscle around my bones, in order to support them.
Is anyone out there trying to get back on a workout routine? I highly suggest starting slow with Yoga. I remember my dad trying to get me on a machine at the YMCA last year. There was no strength in my legs at all and I quit. So I understand it may take until 2-3 years post stem cell to be able to do it. I am quite improved now, I am not as dizzy, and do not fall down as easily as I did when I started. Now I am able to add strength exercises! Here I was athletic all my life and now I am starting from scratch. (But I highly recommend Wii Fit Plus)

3 Years Down

April 2, 2008 is my new birthday, so yesterday I turned three. I do not want a word mentioned around my kids and I really do not want any celebration.
I know how lucky I am, I called my sister, my donor and tearfully said, "Thank You!"
Two more years and my chances of GVH and relapse decrease significantly.
Now that I just cursed myself I should stop.
I did make it through the day, and only once did I think of the hellish state I was in on that day, three years ago. I was at death's door, opening my eyes hurt, I remember looking at the bag of stem cells, and the nurse commenting, "Here we go Michele, your new stem cells."
Words cannot describe that moment! My mouth full of sores, to the bottom of my throat, I grunted. I lay emaciated, burnt, tubes like pipes coming out of my skin. My eyes tear up at the thought of it all.
No, I do not want to celebrate today!

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.