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.