Slow posting. I need to check in and say on Monday i found my CMV levels went back down. A sign my new immune system said to get out. I think so. My transplant was April 9th, 2024. My next BMB is in 2 months. I am hoping my feeling good will mean the results of the BMB are promising.
I thought about something on my walk today. In July of last year, I had finished my year of Lynparza and was excited for my follow-up visit with my oncologist's office. At the time, the fact my Medical Oncologist had moved to another hospital was only a could months past. and i was considered done with my BC treatments. My Nurse Practioner was my only holdover from my breast cancer journey. My breast surgeon first went to Cedars before my MO joined her in their new state of the art department at that hospital.
Well, my NP had told me in May she was pregnant and would be out for the allowed time. I was excited to see her at my appointment and hear about her baby's arrival and all. I had gotten a call from COH to change the appointment but i thought little about it. At the appointment I was now in a different wing in the women's center than i had been for 2 years. When the NP came in, she was not my regular or anyone i knew. As she talked with me. She told me my NP had decided to stay home with her baby. I felt sad right away. I left that appointment knowing the blood numbers in my blood test were worrisome to me. But, because neither the MO and NP knew my case or walked through any part with me, concern was not there. I was let down as i drove home and thought of my loss of my relationship with my NP. She was my champion that helped me through the 2 years. The MO led the way but worked with her NP. Alexandria would have looked at my blood numbers and recommended seeing a hematologist. I had pancytopenia in my BC treatment. I was a platelet donor for 25 years. I knew my blood numbers.
Today i thought what might have happened if i had not advocated for myself and got a referral to the hematology department. My blood readings slowly went down. My next appointment would have been 6 months in January for the new MO/NP. At what point would they have noted any blood number troubles and referred me?
I was reminded that if you have a spouse or are the caregiver for an MDS or other blood cancer patient, you are the support and love a patient will need through this journey. I had a group of friends who listened and encouraged me to keep speaking up. Let the medical team know what was going on. Having no real illnesses most of my life, I was uncomfortable being uncomfortable.
Today I am checking how i feel as i start my day as i have done nearly every day since my transplant. I hope all of you do too.