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.

Give & Get is Here! Enjoy 30% off

Shop and help support the Leukemia & Lymphoma Society! LLS gets 5% of what you spend
4 days only, March 17-20
Gap, Banana Republic, Old Navy, just present this coupon at checkout
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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.

Allergic Reaction

On November 3 we drove to Dana-Farber for my 2 1/2 year post stem cell check up. My doc checked me over and gave me the go ahead to do exactly what I have been doing. It was a non event, thankfully! However, due to my low immunity he advised us, (Glenn and the girls) to get the flu vaccine.
On November 13, the girls and I got our shots. The next day almost exactly 24 hours after the shot I became symptomatic. I had a low grade fever, I felt weak and shaky, and I knew this was all due to the shot. Monday morning before showering I noticed a huge lump at the injection site and hives below the lump. Still feeling ill I waited for the symptoms to subside. That Tuesday I became nauseous, my neck was sore and I noticed uncontrollable spasms beginning in my arms and legs. Of course my daughters were home due to a half day. I tried to keep calm in front of them, but it was hard when my body was out of my control.
In the hospital during chemotherapy and post stem cell transplant I experienced the same reaction to other medicines. The nurse simply explained that this is how my body presents with an allergic reaction.

Funding for LLS

As you may know I am a volunteer for the Leukemia and Lymphoma Society.  The program is called First Connection.  The LLS ofice in Albany receives phone calls from patients and or caregivers requesting that a volunteer call them. We are then matched up by age, gender... and we are given the phone number to call the patient back to discuss our experiences and answer any questions.

I recently mentioned my blog to the person in charge of the First Connections and here is what she said, 

"If you can share the names, I can list these as First Connections. The more matches we make, the more funding we can often obtain, as we demonstrate more service delivery." 

It is the funding that leads to the research that saved my life as well as many others. Please consider michele.harland@gmail.com

Happy Holidays

I want to wish everyone a Happy Holiday Season! May you be blessed with love and good health.
However, if the season finds you down, I understand. I remember my first Christmas after diagnosis, I had a scare the first week of that Dec. a very high fever, infection, and I had to be hospitalized. As far as my girls holiday parties at school I could not go in unless I had a mask on. But I was happy to be home with my girls and not in the hospital on Christmas day.
So, if you are fighting or struggling this holiday season, try to take just a moment for yourself, forget all your troubles, immerse yourself in whatever makes you happy, and take a moment to be free.

Side by Side Article

On the third of the month I had a check up at Dana-Farber. I was thrilled to step out of the elevator and find my article stacked on every news stand. (They have a lot of news stands there). The editor, informed me that the internal patient staff liked it so much, he re-printed it in a small newspaper called, Inside the Institute. This paper also gets distributed to satellite offices. My doc and nurses told me that they loved reading my article. So pleased!

Like night and day

This month my dad and I got in the car to drive to Boston's, Dana-Farber for my six month check-up. After an extra long wait in the waiting room my name was called. My doctor looked at me and said, "How far out are you?" That is when he looks at the blood work and can see what is "normal" for me. He told me I was doing great and gave me an exam. He is the one with the greatest knowledge as to what to expect post stem cell. This is his specialty, he is the man, he is the best, and I trust him with my life.
However, when my local hemotologist reads my blood work there is a whole different reaction. He notices high lymphocites and six red flags for abnormally low blood counts. He wants to keep me on a short leash and tells me to come back in three weeks. It is easy to see he has been burned so many times by a patient relapsing. On the last visit he let it slip out that I was about 1 in 1,000 people who has survived.
I see where they are both coming from, even though its like night and day, I put myself somewhere right in between and I am happy there.

Blog for LLS

Check out this Guest post for LLS that was just published today.

Leukemia Smptoms

Not many people know the symptoms of Leukemia, I get asked all the time what my symptoms were. I experienced three months of mysterious ailments, none of which seemed to be connected. I visited urgent care, my primary, a dermatologist and an orthopedist, and still no diagnosis. I was three months from death when I finally got to the ER, debilitated, I could not walk, and every time I took a breathe my ribs screamed in pain.

My main symptom was joint and bone pain, mine started in my neck in May, and in June my left hip and back hurt. July and August my legs, both hips and my rib cage throbbed. The pain became so severe, the week before diagnosis I felt like my arm was broke. I could hardly turn my neck, and breathing was painful. Over the course of three months the pain spread throughout my body.

Bleeding, another symptom, when I flossed my teeth I would see bright red blood dripping from my gum line. My gums were swollen and puffy, almost like bubbles.

Petechiae, tiny little red dots, appeared on my legs, due to low platelets. I also had a rash around my mouth, called "Leukemia Mask". I showed my dermatologist, he told me there was nothing there. When I arrived at the ER the skin around my mouth was bright red and hot to the touch.

The most visible symptom was a large rash on my chest. It seemed to stop at an imaginary line down the middle of my torso. It was raised, itchy, uncomfortable and seemed to spread. My primary looked at it two times and prescribed creams and pills, but it never got better. (She should have done a simple blood test)
Severe fatigue is another symptom. I used to fall asleep sitting up during the day.
Also night sweats, I would wake up in the middle of the night to find my t-shirt soaked in sweat.

Be aware of your body, when there is something wrong make sure you are heard!!!

Time Warp

I touched upon this subject at the end of the PTSD & Cancer blog. Reading other blogs I feel these cancer patients are facing the same thing. What I am trying to say is that you get diagnosed and you are thrown into another world obviously. After coming home from the hospital I felt I had to go through the shock again. Being home with this new reality was another process of acceptance. The home nurse, the lines my husband had to flush with saline every night. I remember his tears dropping on my arm near my pic line. I came home to a new season, and was bald and sickly! Each treatment phase moved so fast that my brain had a hard time keeping up. Glenn will say, it's been 2 1/2 years and I just scoff, it's like it was yesterday to me. When treatment ended and the kids were feeling secure about me, that is when I looked back and began processing this experience. My husband and I had a conversation about the night of diagnosis and what we went through, who said what to who, that was a year after the fact. So all in all I am in some sort of time warp, but I know I will catch up soon.

My Mother

Thirteen years ago yesterday my mother lost her battle to cancer.

After my induction treatment at Albany Med. I was told by my doctors to start walking around the oncology floor. I got masked up, grabbed my IV pole and slowly shuffled down the hall, happy to be out of isolation. As I walked further I realized something was familiar to me, but I couldn't put my finger on it. I looked at the nurses station and realized where I was. I was standing in front of the room my mother passed away in. This is a place I never wanted to see again.

Side By Side

Here is a link to an article I wrote for Dana Farber's "Side By Side" Newsletter

2 1/2 years down, 2 1/2 years to go.

In order to receive my stem cell transplant I had to be conditioned for a week. My regimen included radiation 3 times per day and chemotherapy. (Radiation, the closest to hell I ever want to be). Once I completed treatment I was at day zero. The next day I was infused with my sister's stem cells and this day was called day one, or my new birthday. My husband actually reminded me that today was an important date for me. Day one was April 2, 2008 and I have been at it for two and a half years. The ultimate goal, five years, that's the "big one" my doctor likes to call it. I am half way there and I can see the finish line.