I watched the fireworks from a friend's rooftop tonight, in Albany. It was an amazing view! Every explosion from each firework, brought back memories and thoughts of why I'm so happy to be alive. How blessed I am to see the fireworks...to have been there...to breath. I once again celebrate life and feel as though I've cheated death.
I remember laying in the bed in Chicago, at Northwestern Hospital, for 22 days, when I got my stem cell transplant. The 22 days were long, exhausting, painful and heart wrenching. I felt as thought I was being torn from the inside out.
However, before I began this 22 day course at the hospital, I had to visit numerous doctors and receive medical testing, to see if I could be accepted into this clinical trial. The trial had many parameters I had to meet. The parameter I was scared of not meeting, was whether I was considered relapsing remitting MS. My disease was so bad at this point, I was admitted to the hospital every 2-6 weeks! I couldn't walk at times and I was in agony with pain. My neurologist was beginning to think I was entering the next phase of the disease, secondary relapsing remitting. After each relapse I was left with residual symptoms. For example, after one of my relapses in which I couldn't walk, the residual symptom was my right leg dragging behind me. The doctors were pressuring me to use a cane at all times, but I was so embarrassed every time I did. People would stare at me, and I felt so stupid, embarrassed and distraught because it was though I was screaming, I'm handicap! I was only 28 years old..
I had to meet the neurologist at Northwestern Hospital and receive an MRI to evaluate the stage of disease. My disability was obviously growing worse, and I knew entering the clinical trial could be a problem!
I was frightened, I needed this treatment. All of the other multiple sclerosis treatment options had failed. I tried Avonex, Betaseron and Copaxone, but never tried Tysarbi. Tysarbi had recently become available as a new drug therapy for MS. After researching this drug, I realized how bad it could be for me because when you stop taking the drug, your MS could become 3 times worse. I couldn't imagine my disease becoming that much worse! The other problem was I couldn't receive Tysarbi when I was receiving corticosteroids and I was prescribed steroids every time I was admitted to the hospital. Obviously this was not an option for me.
I discussed my treatment options with my neurologist, Dr. Lava. He understood my concerns and fears of trying Tysarbi and advised that I may want to consider my last treatment option...chemotherapy. I was scared of chemo because I could only receive it for up to 5 years, before I couldn't use it anymore because it quickly damages the heart. So as you can see, my options were slim, either I received the stem cell transplant or I got chemo. Both options had serious side effects, which included death, and they both meant I was to use chemotherapy. However the stem cell transplant offered hope to my disease. I thought if the stem cell transplant didn't stop the disease, at least it could slow it down.
After all, I had two beautiful children whom have never really had the chance to do anything with me. I couldn't play ball with them, or draw, or take them to an amusement park. All I could really do was lay down, sleep and talk with them,...but that's not what a mother is. I was suppose to be there for them and help them grow...and I sure as heck couldn't do that from a sofa!
My children needed me, and I needed them...
I knew I could die from the stem cell transplant, but I felt like I was dead already!
I limped into the neurologist's office in Chicago....
Scared....frightened....but determined....I needed this...my kids need me....God help me...
I knew this was my last hope!
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