Back in July I had my 3-year restaging with my oncologist/hematologist/blood transplant physician, Dr. Holland at the Blood and Marrow Transplant Group of Georgia (BMTGA). The term, ‘restaging’ refers to the process of determining if blood cancer is still in remission or has returned. The same diagnostic tests are done used to diagnose blood cancer, AML in my case.
The news was great and I was ecstatic! I was still in remission with no evidence of lurking leukemia cells in my bone marrow. At the time, most of the side effects of graft versus host disease (gvhd) were gone and most transplant medications discontinued…down to only 1 antiviral! I was given the green light to live my life fully and completely and to continue my pediatric vaccinations. I was told that at the end of my life, I would die from natural causes other than leukemia, like normal healthy people. This was music to my ears. My struggle from the 3.5-year recovery from life-threatening leukemia and stem cell transplant was over. I breathed a sigh of relief and was overcome with gratitude to my husband, friends, family, BMT doctors, nurses and staff, and Kaiser Permanente for saving my life and giving me another chance at living.
Being a planner, I, of course, made plans…many, many plans. A 2-week road trip to Maine ( still couldn’t fly as I did not have all my pediatric vaccinations); a weekend to the largest National Farm Fair in Perry, Georgia, an event I’ve been wanting to visit for years! Hosting Be The Match community awareness events and donor drives; attending Northside Hospital’s Survivors Reunion held every 3 years; long overdue travel plans to Portugal, Hawaii, Washington State; hitting every national park. Living a normal life!
In August, we started our 2-week road trip to Maine. All was well until graft versus host disease (gvhd) in the mouth struck again midway through our vacation. A trip to Maine Memorial Hospital’s ER and a few prescriptions held me over until I got back home. The gvhd attacked the joints and muscles, eyes and of course the mouth. I was back on immunosuppressant therapy and all the other transplant drugs discontinued only a short while ago. Plus, a CT scan of the chest revealed pneumonia. A PICC line and bronchoscopy were done and 4 of the most potent IV antibiotics, antifungal, and antiviral started…I was back to daily visits at the BMT Clinic.
Needless to say, this setback led to the darkest period in my 3.5-year recovery. I tried all the usual tips on maintaining and building emotional resilience, but nothing helped. My brain was in a fog for weeks, confusion set in and my equilibrium was off due to all the infusions and other medications. All the fun events planned were canceled.
Did I feel sorry for myself during this? Probably. I knew if I allowed myself to completely sink into the abyss, it would be difficult to get out. And it would be so easy to allow this to happen. I struggled to stay above water. Then I read a very short sentence on a social media site…”Never give up. Never go to the dark place.” Ha, easier said than done! My initial thought was “how glib.” But the more I thought about it, the more it made sense. So, I put this little phrase into action. Whenever I felt myself slipping, I repeated this phrase. And now I’m back, emotionally and cognitively. Although my physical state could be better, that will also improve.
These days, I don’t plan much anymore…I now live in the moment working on projects that bring me joy, grateful to feel the wind on my face, to see skies so blue and wonder about the beauty of our planet that takes my breath away.