Laurasalzy's Journey:

Patient: Non-Hodgkin Lymphoma (NHL)

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 7 years ago, Female, Age: 66, Stage IV

  1. 1
    • Laurasalzy
    • Experience with Non-Hodgkin Lymphom...
    about 5 years ago
    Laurasalzy's Avatar

    Whether to try more chemo or not

    Decision Point

    I never did get my stem cell transplant because tests showed an electrical problem in my right ventricle which totally disqualified me for transplant. I am devastated because the only survivors of this particular Lymphoma (Hepatosplenic T cell NHL which affects the liver and spleen) were given the transplant. We leave Houston and return home to Florida. I feel as if the last year of chemo, transfusions, painful bone marrow biopsies, CT Scans, PET Scans, echocardiograms, etc. were for nothing because I am no better off now than I was at diagnosis. How did I get this disease? I am not your typical patient of T Cell NHL which is young males or people of Asian descent. I am neither. We are thinking it may be environmental. I worked at ground zero in 2011 and breathed in a lot of toxins. MD Anderson suggests I try a last ditch treatment which would give me more time. It is an injection of a drug called Folyton and it nearly killed me. The first injection was no problem. I was to be given an injection every two weeks for six injections. The second shot was my last. My mouth filled with sores so bad that I couldn't talk. My husband found me bleeding from my mouth and nose in bed and nearly dead. I was admitted to the hospital but only to be made comfortable. My platelet count was at 7. Normal platelets are between 140,000 and 400,000. I was near death. I couldn't pull myself up in the bed, couldn't drink or eat with the mouth sores and my legs wouldn't let me walk anymore. My sister is a retired nurse and when she arrived at the hospital, she took me home and called Hospice. She was my miracle because she fed me and forced me to get stronger and I'm here today because of her. Hospice was wonderful and I had them take care of me for about 15 months but they just discharged me because they told me hospice care is only for people with less than six months to live. Wow! I am now a cancer survivor. My doctor is amazed because he has never seen this kind of spontaneous remission. Nobody knows how long this will last but i'm taking one day at a time and love my life and my family so much. All me dear friends flew from all over the country to say goodbye but I fooled them all. They too are very happy. My husband has been the most amazing caretaker.

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  2. 2
    • Laurasalzy
    • Experience with Non-Hodgkin Lymphom...
    about 5 years ago
    Laurasalzy's Avatar

    Hospice

    Other Care

    My hospice nurse, social worker and chaplain were all wonderful and are now friends for life. A month after being sent home from the hospital, my husband found me face down on the floor next to our bed bleeding from my head which I hit on my end table when I passed out. He called Hospice and they recommended I go to the hospital because the Hospice nurse couldn't get a pulse! My heart rate was 20 in the ambulance. I remember talking to the EMT's like nothing was wrong. They thought I had a blockage but the cardiologist at the hospital determined that the right side of my heart had just about stopped and I needed a pacemaker. I had the pacemaker put in and went home the next day. I am very happy to report that it has now been 17 months without a visit to the hospital!! Life is good and I thank God every day for waking up.

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