I’M STILL HERE
The twelve days I spent in the Mayo Clinic were by far the hardest days of my entire life. After the CAR-T cells were put into my body on Monday, September 10th, I essentially blacked out and don’t remember anything until September 17th. There are bits and pieces which have come back to me, but most of it is just a blur.
For those of you who don’t know what happened, here is the extremely condensed version of my stay in the hospital.
The first few days after the CAR-T infusion were filled with many fevers in the 100 to 104 degree range which brought on constant sweats, chills, rigors, nauseousness and exhaustion. Early on the morning of Friday, September 14th, I took a turn for the worse. I was very confused, my ability to speak declined and I was unable to independently move around. These are the beginning signs of neurotoxicity in the body. I was then immediately sent down to the ICU for close monitoring and given steroids to stop the side effects. Unfortunately, this did not completely stop the brain swelling that had already set in. My stability continued to quickly decline and the ICU team was very fast in getting me stable, however they needed a lot of assistance to make that possible - I was put into an induced coma with a ventilator, feeding tube and a drain was inserted into my brain to drain the excess fluid build-up and keep my intracranial pressure at a normal level.
I remained in this state until Sunday, September 16th which is when I was then taken off sedation, the ventilator and the brain drain was also removed. After being bedridden for 8 days, I lost nearly 20 pounds and all of my mobility and strength. I essentially needed to learn how to walk again with physical therapy. Slowly, my mind and body became strong enough for me to walk out of the hospital and go home on Friday, September 21st.
Although I was discharged, I still had a lot of work to do to get stronger - physically and mentally.
Since my discharge from the hospital, I have had continuous follow-up appointments every Monday, Wednesday and Friday for blood work, various tests and meetings with my team of doctors. So far, everything seems to be working based on test results.
I had a 30 day follow-up PET scan today, October 11th to evaluate the progress of the CAR-T cells and if they are doing their job in fighting the cancer.
The results of the scan revealed that nearly 99% of the tumors and cancer are GONE. I still have some residual scar tissue in my chest and right lung, but they are not showing any cancerous activity. The plan now is to have weekly follow-ups for bloodwork and to have another PET scan performed in December to ensure that everything is still working as planned.
I think it’s safe to say that the CAR-T did its job.
While this cancer journey is far from over, as this is something I will be living with in the back of my mind for the rest of my life, I think it’s safe to say the worst is over.
Thank you to each and everyone of you for the constant and continued support for both myself and Rebecca. Our gratitude and appreciation extends beyond words.
I leave you with the first song I heard when I woke up in the ICU during my hospital stay. This song means a lot to me now after hearing music after such a long time of being unconscious.
In the meantime, stay in touch, visit again and witness cancer through my lens and keyboard.
Until next time…