Sep 28, 2018 Latest post:
May 20, 2019
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your words of hope and encouragement. Thank you for visiting.
My journey with Myelofibrosis began in 1996 when a physician urged me to get to the bottom of my anemia which had plagued me for years. I was never able to give blood because my hemoglobin (red blood cells) was too low & was always flagged on blood draw reports. So, I started six months of tests and ultimately a change in hematologist in order to get a diagnosis. I was told the disease was progresssive and would cause my bone marrow to become fibrous and incapable of making my blood. I remember reading that I had "1 to 3 years" but I was only 44 years old and had a 13 year old daughter and 18 year old son at the time. I was also urged to get a bone marrow transplant.
Five months later, I woke up with a backache which became too much to bear and ended up in the hospital. After numerous tests to find the source of internal bleeding, I was told I had renal cell carcinoma and my right kidney would have to be removed. It was a confusing time but the Lord was with me. Even though this is a rare disease that usually is not found before it spreads, I had my kidney removed and did not have to have any chemo or radiation. I was cured!
So, I continued to live with low blood counts and tried numerous medications to try to slow the progression of the disease. They ultimately were chemo type drugs which made me feel worse and caused side effects such as neuropathy & killed my thyroid. The only cure was a bone marrow transplant but it was very high risk. By now, the doctor who told me to get one was saying that it was a good thing I hadn't gotten one since I had outlived the estimate.
I gauged my progress by milestones in my life. I needed to live long enough for my daughter, Heather, to graduate from high school and son, Brian, from college. Then I needed to live long enough for my daugher to graduate from college...long enough for her to get married...long enough for the birth of my first grandchild...fast forward to where we are today...granddaughter, Madison Ainsley, is six years old.
At the beginning of this year I became transfusion dependent. Despite getting weekly shots which also require a blood draw to check my hemoglobin, I have required transfusions every 4-6 weeks. This requires sitting at the hospital for half a a day to have a kind stranger's blood infused to give me life. I generally get one unit of blood which raises the count to a level that the heart palpitations and shortness of breath improved but still at 3-4 points below average. This allows me to live a fairly normal life for the first few weeks but for the second half, the side effects start returning and I have to take long naps in the afternoon.
I am grateful for the 22 years I have had to watch my children become wonderful, productive adults and a granddauther that is the light of our lives. My husband, Barrie, has stood beside me and we were fortunate to run a very successful air conditioning company for 20 years in Miami and have had a great life together. Our faith life was very active at St. Louis Catholic Church in Miami and we have found a great church in Indiana called St. Maria Goretti Catholic Church.
I have had consults at Mayo, AZ, Moffitt in Tampa and Indiana University. Stem cell transplants require 4-6 weeks hospitalization and then staying within one hour from the hospital for a minimum of 100 days. Since we have a home within that distance, have family and friends who have offered their assistance and I found a hematologist that I trust with my life; we have chosen Indiana University Simon Cancer Center. My husband of 42 years (for better or worse) has volunteered to be my primary caregiver and my daughter will be backup.
My stem cell transplant will begin September 27, 2018. I was originally given a date of September 17 or 18 but in order to accommodate my donor and his stem cell collection center, it was changed. My two brothers (25% chance) were tested to see if they were a match. My children were also tested but since they half of Barrie's HLA, were also not a match. I am forever grateful to my donor for being willing to provide me with a 10-10 match. I actually had three matches, thank you God.
So, I will check into the hospital and immediately have a central line surgically implanted in my chest by an interventional radiologist. They will use this 'port' to administer chemotherapy, medicines, draw and give blood as needed. That same day, I will start chemo which will continue for seven days.
October 4th will be my new 'birthday' and the donor cells will be infused through the central line. I will lose my hair and I'm hoping some wrinkles too :-) I must admit this is a scary time but I am grateful to God that I have a wonderful husband who will be my main caretaker. I'm sure it will be difficult for him as he is responsible to take care of me and also to drive me back & forth to the hospital 3 times a week for 100+ days. My daughter, Heather, is going to be backup and a great help as well. I am blessed.
This is a high risk procedure due to possibilities of infection and graft-vs-host disease. If you have any interest, there's a great youtube video called 'Dr. Jeanne Palmer Stem Cell Transplant for MPNs' describing the entire procedure. I actually had a consult with Dr. Palmer at Mayo, AZ last summer. She helped make the difficult decision for transplant and determining the timing for my best chances of success.
What I really need from all of you is your prayers. I doubt I'll be having much fun but it will sure make me feel better to know that I can count on you for your love and your prayers. I love you all and will try to update as often as possible. I hope to hear back from you