08/08/2024
I’ve been fairly quiet lately without a lot of updates… I apologize. Not only have I been extremely busy with work at school and with pet sitting but I have been anticipating today’s 7 appointments at MD Anderson.
One week from today will be my one year since my bone marrow transplant. One year since my “re-birthday” as they call it. One year since a 36 yr old man that is an absolute stranger to me saved my life. It’s EXTREMELY emotional. I’ve been thinking about the last 18 months of my life constantly as of late and cannot believe all that I’ve gone through.
Never in a million years would I have believed I could gather the strength to survive this struggle.
When you are given a 16-20% chance to make it… the entire world starts to look very different. I live every day with such a different outlook now.
I STRONGLY encourage every single one of you to join Be the Match, donate blood, support LLS and ACS, and GET REGULAR SCREENINGS. The rare leukemia I was diagnosed with is most often seen in men over 65 years of age. I was 41 at diagnosis. I was told at my first leukemia appointment that I wasn’t a candidate for leukemia. I was told I just had severe anemia and severe inflammation being masked by other things going on with my body. I told the doctors “thank you, but you’re wrong”… three weeks later, I got the call… 11 mutations on 7 genes… nothing hereditary… doctors were baffled. My diagnosis was less than 1 in a million. At my age it was less than 1 in 10 million. I have encountered 4 other people in the world with my diagnosis and mine was the worst case of the 5.
Doctors tried five different types of chemotherapy that left me at my absolute weakest… none of them worked. I went into stem cell transplant with a very high “blast count” which is not normal procedure. It was my only chance. My only shot of not getting worse by the day.
Not only did I make it through a total of 41 days of inpatient hospital stays, I made it through my month long stay on the 18th floor of MDA (you cannot leave the floor, there’s no patio or window to open for fresh air, every day is groundhogs day and a struggle) faster than expected. I then made it through my outpatient treatment two weeks ahead of schedule and my clinic appointments two weeks ahead of schedule after that. I WAS A WALKING (very slowly) MIRACLE.
I do not take this for granted. I watched many people I had met along my days at MDA not very near as successful. I watched my stem cell bestie lose her battle after making it to remission and the most hellacious fight I could ever imagine. I saw so many of the same faces at every appointment and my heart sank constantly as my new friends grew more weak and frail along the way.
I owe the absolute world to my doctors (namely Dr. Issa in leukemia and Dr. Bashir in stem cell) who are some of the best humans I have ever met. I owe my amazing nurses (namely Faida, Delicia, Grant L, Calvin D, Eydan, Jacob R, Lillian T, Jennifer B, Victoria T, Rommel C, Chloë, and many more I’m forgetting at the moment) who really listened and cared for me whether I was in my worst mood or my best. My lab ladies on the 8th floor, Mrs Taylor, Mrs Maria, and Mrs Tina who put up with my shenanigans and have even wheeled me all over the building when I didn’t have the strength the wheel myself. There are so many wonderful humans at MDA… I’ll never forget their care for me.
I also need to thank some of the incredible people in my life that have helped me in ways I can never ever explain or repay… Michelle, JR, Nathan, Rosalinda, Monica, EmmettandGloria, Eydan (again), Ciria, Janice, Hernandezl
Wendy, TJ, Becky, Pegge, Dot, Kate & Lennie, Marni, Diane and Helen. These people kept me going. They believed in me, checked in on me constantly, lifted me up, provided funds and supplies, and just genuinely were there. They are forever “my people”. I will forever love each of you.
This is a lot to read and if you’ve made it this far, you are also my people. You care. I appreciate you.
I look at life SO differently now. Little things are unimportant. People, interactions, and experiences are inportant. Each day I continue to look for purpose. I am blessed with a new job that I absolutely love and cannot wait for school to start so I can continue grow and learn in my field and see all the amazing students I’ll be working with… I am blessed with amazing coworkers, the best pet sitting clients, some of the most fun friends, and the sweetest family.
Many of you do not know that I am still in treatment as a stem cell patient. I take a low dose chemotherapy medication as well as a number of other meds that keep my liver in check, my stomach okay, and many other things. I have appointments usually once per month and some zoom appts every few weeks. I do blood labs every few weeks as well. Today is a HUGE day of results. I have a bone marrow biopsy, major labs, a mammogram, an MRI and several other things. If you have a few moments to send prayers and well wishes my way, I greatly appreciate it. We are looking for cancer free results!
I do still have major joint pain, bad arthritis and numbness in my hands, a severe sensitivity to the sun and heat, nasty reactions to bug bites, a weird appetite, and some mental health struggles. I still wonder how I got here… how I’m still here… and worry about the C word coming back. But overall, I am happy (even if I now have wirey short gray hair).
Thank you for reading my long update. My love to you all 🫶🏼
