Jul 16, 2021 Latest post:
Mar 26, 2022
Hi family and friends! Thank you for visiting my Caring Bridge website where we plan to keep everyone updated in one place for ease and consistency of communication being delivered to you. After a couple delays, I am now on schedule to head down to Brigham and Women’s Hospital in Boston this Friday, July 16th to begin the stem cell transplant process. I hope this site will help you all to feel informed and comforted during our journey!
So, how did I get here? Wow, it's been a long road for me and my loved ones. In 2005 I went for my routine annual physical (PSA...ALWAYS go for routine physicals!), which included a blood test that came back abnormal. The only symptoms I had been experiencing were migraines and fatigue that I thought were normal for a full-time working wife and mom of 2 daughters. Kassidy was 2 years old and Colette was 5 at that time (They are now 18 and 21!). A bone marrow biopsy revealed a JAK2 mutation of my marrow and I was given a diagnosis of Polycythemia Vera, a blood disorder in which the marrow creates too many red blood cells causing your blood to thicken. For the first 11 years the symptoms were managed mostly through therapeutic phlebotomies and some iron infusions.
By 2016, the disease had progressed and symptoms worsened so I was placed on daily oral chemotherapy medication. I responded well to that medication for a while but my body eventually stopped responding to it by early 2020. For the first time, my symptoms were beginning to hinder my ability to perform my normal physical activities and I’ve slowly stopped doing some of the things I love over the past year or so. My spleen enlarged to a point it was down into my pelvic area and encroaching on my other organs, so living quarters in my torso felt quite cramped. My stomach was being squished a bit so even though I still had a good appetite I could not eat much before my gag reflex would show up to the party. I began to lose weight and developed a chronic cough, which was only found to be useful in quickly clearing out grocery aisles for me throughout Covid.
In July of 2020, a bone marrow biopsy revealed further progression of the disease into Myelofibrosis, a bone marrow cancer that disrupts your body's ability to produce blood. I was presented with 2 options. Option 1: Start a different chemo medication to manage symptoms but expect that my body would eventually stop responding to it as it did with the first med. Option 2: Initiate the stem cell transplant process now while I am still at a good age and physical condition suggestive of achieving the ultimate outcome of a full recovery and CURE! Mike and I did not hesitate in agreeing to move forward with the transplant option.
Although the news of the Myelofibrosis was not completely unexpected by me, the timing of this new diagnosis was less than ideal as my family was still mourning the loss of my brother Bob to cancer just two months earlier. The biggest challenge I felt on our drive home from Boston on the day of learning about the transplant was knowing how critical it was to inform my girls, my Mom, siblings and rest of my family about my new diagnosis and plan in a way that they understood that it is an exciting time for me because I have an amazing medical team who believes in the transplant process and believes in it working for me based on how I have managed through everything else. I am fortunate to have genetic gifts of strength from Mom, sense of humor from Dad and a positive mind set created by so many different influences. Another PSA...positive mindset does not always come naturally. Mindset is a choice and if you struggle with negative mindset, there are resources to help you learn to train your brain to harness positive thinking. It works!!
My support system is ON POINT both personally and professionally! I am educated on the process. I have mentors who have been through the process and provide me with details of the good, the bad and the ugly but most importantly the beauty of what comes after it all. I know it’s not going to be easy but I also know the dreaded part is temporary. I know the outcome will be so worth it so please trust me that I will do everything within my control to make this go as smoothly as possible for all of us involved. It takes a village of caregivers who have already kicked into action helping us prepare our home for the safest recovery environment and I do not plan to disappoint! For those of you who know my hubby Mike, I bet you have no doubt that I am in the best care with him as my gatekeeper....I mean CAREGIVER!
Much love to you all and here's to triumph for ALL of us in whatever challenges we may be facing....we've all got 'em!!! Lastly, somewhere in Europe there is a person who is selflessly beginning her part of the donor process for me, someone who she knows nothing about and she reaps no tangible benefit for helping. She inspires me to do better!❤️