Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Today was my appointment and I got the best “bad” news a person could get 💕🙏
After 3 weeks of stress and waiting we finally have the answers we were seeking:
I do have MDS EB-2 (Myelodysplastic Syndrome aka blood cancer)which is the worst type to have and the type that most often converts to Acute Myeloid Leukemia (AML). On a risk scale 1-5. I am considered a 5 which is “Very High”. Additionally, Dr Zen said my genetic studies show many mutations which put me in that high risk category.
The good news is there were 5 lymph nodes in my neck that the Dr felt could be an additional type of cancer but they turned out to be benign! These lymph nodes literally saved my life as I would not have gone to the Drs without them.
Having buried my dad 4 days earlier I finally went to the Drs on October 30th for the lymph nodes that had been enlarged for the 2 months Dad was sick. On October 31 my PCP called and said I needed to see hematology that day. The hematologist did a bone marrow biopsy that day. On November 1st (my 55th Birthday) I received my first unit of blood. I thought my PCP was going to diagnose me with stress, grief, overload, etc but instead he ordered blood work that led to my MDS diagnosis.
Now, after a bone marrow biopsy, a unit of good blood and biopsies of the neck lymph nodes we finally have a diagnosis. It’s weird to be relieved to have blood cancer, but I am. I didn’t convert to AML and we have a good fighting chance at a cure. I could still convert to AML but Dr Zen is hopeful we have caught this in time.
I will do 3-6 months of chemo in Albany (7 days on 21 days off). During this time I will have all of the usual side effects of chemo except hair loss. I will also need blood and platelet transfusions in between. My Platelets, White blood cells and Red blood cells are very low now although not at transfusion levels.
I have some literature to read on chemo then on Monday December 3rd I will meet with a nurse practitioner to review the diagnosis and I will start my first round of chemo on Tuesday December 4th (7days on 21 off).
Additionally I will go to Dana Farber in the next two weeks for a consult. After chemo is complete I will have another bone marrow biopsy and will need a bone marrow transplant (or stem cell transplant) and will likely spend 4-6 weeks at Dana Farber. My blood relatives will be tested specifically to see if they match me as that is the best hope for cure. Fingers crossed we find a good match!
This will be a long road but God is good and I am blessed to have the best support system in the world. It's time to get busy kicking Cancer’s Ass!
Because I feel journaling is good for the mind I will be documenting my journey through this website. Feel free to drop by any time. Prayers accepted and appreciated 💕🙏🏼