Updated: Feb 15, 2022
I woke up on April 7, 2017 and planned to go to work as an obstetrician/gynecologist, just like I did every other day. I thought that it would be a typical Friday work day. Boy! Was I wrong! My head felt like it was going to explode, similar to a volcano getting ready to erupt with volcanic ash, when I changed from a supine to sitting position. Rather than driving to my office to see my own patients, I had a friend drive me to my internist with me being the patient instead. My life was changed forever! I was hospitalized and told that I had 10 days to live.
I called my siblings and informed them of this horrendous news. My doctors told that the best place in the country for metastatic brain tumors with unknown primary was Memorial Sloan Kettering. I knew that I might not make it there if I flew but, what the heck! I had nothing to lose because living only 10 more days was not much time anyway!
No academic center in the entire state of Florida was willing to operate. I had 4th ventricle hydrocephaly (water on the brain) and a tonsillar herniation (part of my brain was in my spinal canal). I boarded a Delta Air Line flight as an almost 4 million “paid butt in seat” frequent flyer. My brother asked me how I was doing halfway through the flight and I just shook my head. He then said, “If you die, you will die doing something you like. We’re sick! ” We then both laughed and said that you can’t control some things! I knew that I had to survive the flight because how could you be so close to being a lifetime Delta Platinum Medallion and be a 4 million miler and NOT reach that milestone?
I only needed 121,000 miles more to go. (I DID accomplish this feat in July, 2017!).
When final approach was announced, I calmly walked up to the onboard flight leader and announced that I was a physician, that there was a medical emergency on board, and that I was the medical emergency. If a person dies onboard an airplane, it becomes a crime scene. I told the flight attendant that it would be better that this did not happen. The plane landed, a supervisor came on board, and asked if I wanted an ambulance.
I said “No! I will take Uber.” It was faster to arrive in urgent care via a 20 minute Uber ride than via being evaluated, having an IV started, and then be transported by ambulance. As a physician, I knew that every minute counted. I arrived at MSK at 10 PM, almost received burr holes (holes drilled into the skull to release pressure in the brain) in urgent care, was initially too unstable for immediate brain surgery, but then had it at 2 PM the next day.
I told the neurosurgeon that if I was going to be a gork, do NOT wake me up! She did a fantastic job and 2 months later, Dr. Tabar became the current chief of neurosurgery at MSK. My initial tumor load included 3 discreet brain mets, 2 other areas which were streaks, 2 lesions in my lung and a left hip metastasis. I received Stereotactic Radiation Surgery (SRS) to the 3 dominant brain lesions and left hip met.
On June 24, 2017, I was told that I had the ROS-1 genetic mutation and was enrolled in the Phase 2 entrectinib trial. I continue to participate in this clinical trial 3+ years later as I remain on my first TKI (tyrosine kinase inhibitor).
Unlike many other ROS-1ders, I do not have the severe bone or muscle pain when I briefly stop entrectinib for numerous reasons. I also did not experience massive weight gain. In fact, I lost weight and look fantastic, if I may say so myself! I have been hospitalized numerous time each year for pneumonia and other issues.
At the three year mark, I developed a recurrence of a previously radiated brain met. This was removed on 5/12/2020. I now have other medical issues, included profound orthostatic hypotension, severe ataxia (balance problem) new onset atrial fibrillation, vision loss, and total loss of sensation in the right leg from the knee down, just to mention a few. The neurosurgeon anticipated the right leg sensory loss to occur, based on the location of the brain metastasis. She thought that the surgery would profoundly change my life I fooled her! I am NOT confined to a wheelchair, as she anticipated. In fact, I alternately sit in a wheelchair/stand pushing the wheelchair, like you would do with a walker, listening to my favorite workout music for 3 ½ -5 ½ miles daily at 5:30 AM. I cut down my initial time post-op from a 28 minute mile to a 20 minute mile. This is my favorite part of the day! Everyone calls me an overachiever and I am very proud of this! I now go to PT and OT as part of my weekly routine. My brain scan on 6/18/2020 showed progression in the 2 initial brain streaks from 2017, which are now distinct metastases. I will have more SRS in 2 weeks for these mets. But, guess what? I wake up every day and it is therefore a FABULOUS day! I am very grateful to be alive at 3 years post diagnosis and seize the moment.
On Monday, June 22, 2020, I completed another revolution around the sun. I had a fabulous birthday celebration, thanks to my sister and brother-in-law, with whom I now live. I am getting ready to go for COVID test # 10 since Mother’s Day, due to MSK protocols. Can you beat that number? At least 2 more tests are “in the cards” over the next month due to upcoming procedures. Lastly, the 7th cervical nerve in the neck only does one thing. It gives the nerve supply to the middle finger and half of the ring finger. Since I think that it is unprofessional to swear, I say “C7”, which implies the same thing. Funny, isn’t it? I have baseball caps for my Cancer Team supporting this cancer journey – the C7 Squadron!
Another year wiped away! Happy 3 year cancerversary and another revolution around the sun! I am not planning to go anywhere for a few more years! Glad to be part of the ROS-1ders. Thanks a million to my caregivers, ROS-1ders, and my awesome, compassionate, and brilliant medical team. Now if we can get pharma onboard for additional drug options…. That would “make my year!”