I had a breakthrough after my most recent check-in with my oncologist and transplant nurse. At the appointment both women kept telling me how wonderful I was doing. I had blood drawn and then they get the results in rapid time and tell me I’m doing great. This has been par for the course the last several months. I was able to stop taking antibiotics because my immune system had reached a particular marker. Non-medical speak translation: my immune system is getting stronger and I am getting stronger. But in my head as they laud my progress I think, “but I’m still using a mobility aid and I’m not walking as well as I used to.”
The breakthrough came upon reflection. Those who know me will not be surprised to read I am rarely satisfied with “good enough.” I tend to want more, expect more. I have high standards for myself and others. While my incredible medical team is telling me how great I’m doing, why can’t I feel it? Why am I still disappointed in myself and my progress post transplant?
Neurological set backs
My largest set backs during the HSCT process have been neurological. I called 911 following the first chemotherapy Cytoxan priming in May when I found myself paralyzed. I was paralyzed again day +3 through day +8 in the hospital. I had severe nerve pain a few week after being discharged home. It was so severe that I awoke in the middle of the night unable to control my legs as they had nerve spasms. This instance, I was unfortunately bounced between oncology and neurology like a tennis ball. The oncology resident on call said “that’s a neurological issue.” The neurology resident said, “I am not familiar with HSCT.” And I was left screaming and crying wondering who to turn to when both sides of the medical team said “not it!”
Herein lies my epiphany; my oncologist and transplant nurse are fluent in the language of oncology and I speak the language of neurology. Some of you might be saying, “duh” to yourself but this revelation was big for me. I have zero background in cancer metrics, blood markers, blood test numbers. I had never watched someone get chemotherapy until it was going into my body. And most of all, I take my health for granted in the blood test and clinical markers that my cancer team are watching because I don’t have cancer. I do have extensive experience in MRIs, lesions, neuropathy, loss of sensation and loss of function but that isn’t the conversation we’re having.
So despite seeing my oncologist, I craved a neurological sign of success. I was glossing over key clinical indications of health and healing because they weren’t the thing I wanted to focus on. (As I write this I realize I sound a bit like a petulant child.)
Delusional or hopeful?
As my oncology team tells me how healthy I am, I am sabotaging myself. I want to walk without a mobility aid, stand taller, be able to lift my right leg at the hip and flex my feet. Despite being told that HSCT is not a cure for MS, I kinda, sorta want it to be. I want to wake up one day and be healed with full function restored. So as I’m nodding in acknowledgment, I’m having an entirely internal conversation with myself about how I will heal faster, do more, be better, be cured. Dangerous or hopeful? I don’t have the answer.
Yes, I realize it is absurd. Yes, logically I know that isn’t the path or expectation of HSCT for treatment of multiple sclerosis. But, I still want it to be. So my challenge right now is hearing my oncology team share their metrics of success and being proud of what my body has endured and how far I’ve come divorced from my standard MS symptoms. I can simultaneously gauge my healing success on stamina, endurance and functionality with my own focus on neurology.
I don’t need a doctor to tell me I’m taking stairs better, I just am.
The magic happens when oncology and neurology work together. When they develop a joint language or a tag team approach that addresses both specialties. I dream about being able to see both doctors at the same time in a joint appointment. Yes, I acknowledge the logistical nightmare, but as Cleveland Clinic builds this clinical path, a girl can hope.