I trust my intuition and my village. The words of Jewel’s 2003 hit “Intuition” have stuck with me throughout my MPN and MDS journey, “Follow your heart. Your intuition. It will lead you in the right direction.”
I lived mostly symptom-free with a type of MPN called Essential Thrombocythemia JAK2+ for 18 years. When I received an abnormal blood test, I began to worry that my disease had possibly progressed into Leukemia, and possibly AML. I was on Hydroxyurea for 13 years. With the help of my hematologist, I went off this medication for 5 years, but unfortunately blasts (immature blood cells) began to occur.
I googled furiously looking for explanations of my first bone marrow biopsy report. Despite my research and questions, I was still being told that I had MPN with a complex karyotype. I had to wait for the disease to decide its course before we could look at treatment options. We found out that the medication that would usually be used, would not work for me because of two Tp53 mutations. I was nervous but I had seen three different Hematologists/Oncologists, so I knew I had to keep the faith. I kept focusing on one sequence, del (5q), as my white counts and blasts continued to rise.
My research lead me to believe that I had MDS. My doctors had mentioned MDS before as well as AML and MF as possibilities for me once my disease progressed. The del (5q) was still left unexplained, as it was not common for someone with only MPN. My intuition told me it was time to look for a specialist to figure out exactly what was going on. I was very lucky to be connected to a doctor at the Moffitt Cancer Center in Tampa, Florida, who believed he could help me and my specific situation. I had a second, more in-depth bone marrow biopsy that was similar to the first, except it revealed that I also had MDS.
I had trusted my intuition, and it had been correct; I did have MDS. Thanks to my research by the time of my diagnosis I was pretty familiar with MDS, and I met with an MDS specialist. I was considered high risk, and was put on 400 mgs of Venclexeta in February after starting Vidaza infusions in January. The goal was to bring my counts down so that I could enter remission. Fortunately, I responded well to the treatment and was able to schedule my transplant for August 1. I had testing from June 22nd to July 31st and stopped my Vidaza treatment on July 3rd.
Right after I was diagnosed with MDS, COVID-19 reared its ugly head. As the African proverb goes, “It takes a village to raise a child”. In terms of MDS, this is true in the best of times, let alone during a pandemic. When you’re dealing with a bone marrow transplant due to MDS, a community of family, your village, is everything, and I couldn’t be more grateful that I was surrounded by such giving people. My rock of a husband and caregiver Peter, family members, many friends, the incredible staff at Moffitt, and the 22-year-old kind stranger who became my donor, just to name a few.
With COVID-19 changing so many things, I am so fortunate to have Dr. Farhad Khimani with me every step of the way. The same goes for the entire amazing BMT staff. With COVID-19 raging outside and rattling the windows, they did everything possible to keep our transplant floor safe. It wasn’t easy to be alone, in isolation, with prohibited visitation. Moffitt’s staff was filled with kindness, patience and stellar care that will never be forgotten. I stayed in the hospital for 23 days and they made it the best possible experience given the circumstances.
In the midst of trying to keep myself safe so I could make it to transplant without complications, the country ran out of masks, hand sanitizer and common sense. Out of sheer frustration and desperation, I reached out to Audrey Hassan at the MDS Foundation and asked if there existed such a thing as a badge, alerting my fellow humans that my immune system was compromised. How about masks?
Audrey was very gracious in her apology that no, at that time there were not any badges, but that didn’t mean there couldn’t be! Soon I was proudly sporting my new badge everywhere I went. At the Dr.’s office I was asked about it all the time. Soon, the masks arrived. Together, we took my safety to a whole new level. I was doing what I could to stay safe and the MDS Foundation had made it all possible. They had become an important part of my village.
I believe in my village and I also believe the following proverb, “If you want to go fast, go alone; but if you want to go far, go together”, which originated in Africa. African culture revolves heavily around community, just like the MDS Foundation. Having this community has been so important to me as community is a difficult thing to be without during this time of isolation. I am grateful to all who banded together for me in this time to create a wonderful village that changed my life and made my treatment possible. I am also grateful for Jewel who reminds me to listen to my intuition which prompted me to get a second opinion. My village and my intuition saved me and continue to inspire and impact me today as I continue on this journey.
