The Denouement Of A Cerebellar Brain Tumor Saga
08 February 2014
Or, "Getting Inside My Husband's Head!" (I have a million more, but I'll spare ya!)
This was Rob in October 2013. See? Skinny, hairy, mostly functional.
This was Rob just four months later. A week ago, in fact.
The backstory synopsis: In 2010, he had a cluster of headaches that brought him to various Virginia Beach-area Emergency Departments multiple times. Finally, they did an MRI and CT scan, which revealed an old TIA (Trans-ischemic attack, or a mini-stroke) of unknown origin. He was admitted to the neurology department at Portsmouth Naval Hospital for further testing, which coincidentally revealed a probably-congenital cavernous hemangioma on his lower cerebellum, near the peduncle that connects to the brain stem. (Don't worry about what that means other than that, because it was benign, asymptomatic, and in a dangerous spot, they decided not to touch it.)
Fast-forward to May, 2013. Rob retired after 20 years in the United States Navy. Having given two decades of his life to his country out of the need to provide for his wife and kids, we moved to the Miami, Florida, area so that he could pursue his dreams of going to college for a BSN and becoming a trauma nurse. However, the tumor had other plans for him, and one day I noticed him exhibiting a whole host of odd behaviors that brought us to the Emergency Department yet again. And then again, and then again, until I finally sought out a neurosurgeon at the University of Miami, Dr. S.
Dr. S. looked at the scans we'd brought to him and told my husband that he COULD operate, but that he would NOT operate because it was too risky. Alternatively, he recommended Rob go to Dr. F., a radiologist-oncologist who would perform Cyberknife radiation surgery to blast the tumor. Because it was benign and slow-growing, they said, it would be even slower to resolve, but Cyberknife should do the trick.
Turns out, after five Cyberknife surgeries in June, that not only did the tumor not shrink, but in September, I started realizing something not-so-funny was going on with my husband again. Back to the ER, more MRI, more consultations with both Dr. S. and Dr. F., and three stays in Neuro-ICU revealed that the site of Cyberknife radiation had bled in his brain, and the surrounding, formerly healthy tissue was swollen. Inflamed. Damaged. Dr. S. told us the tumor was gone, but the bleeding and swelling were obviously a problem, so they put Rob on a lengthy course of Decadron, a steroid routinely prescribed for brain tumor patients.
Over the succeeding four months, Rob gained over 40 pounds on his slight frame. He started having to walk with a cane, shuffling slowly and painfully around while the rest of his family constantly waited for him to catch up. He got in a motorcycle crash and was banned (by me) from riding, and then he was banned (by Dr. S.) from driving at all. He had a lot of dizziness, confusion, memory loss, and so many other problems. It was ridonkulous. Basically, if it was a side-effect of Decadron, Rob had it. Poster child, much?
The two doctors were no longer in agreement about how best to treat him. Dr. S. insisted the tumor was gone and he would not operate; Dr. F. said it was still there but Rob was doing fine. I turned to friends in-the-know to track down another doctor for a second opinion, which led us to the office of Dr. Jacques Morcos on the morning of Friday, February 1, 2014.
After his residents took a history and did a brief neurological exam, Dr. Morcos walked in and shocked us to the core. He told us that not only was the brain tumor still there, it was operable. He was the one who could do it, should do it, and needed to do it NOW before another, probably catastrophic brain bleed occurred. After a barrage of questions, mostly from me, we left the office thoroughly stunned, scared, shaking, and crying, to discuss it and leave Rob to make his decision.
That afternoon, Rob said "yes" to surgery. He cut off his long, curly hair, and we started to make the plans and arrangements.
On Tuesday, February 4th, we dropped off the children to a babsitter we'd just met, not knowing when I would be back to get them. We checked Rob into Jackson Memorial Hospital, where Dr. Morcos said he needed to be for his condition and this surgery. I went to get him sushi, which he referred to as a condemned man's last meal. We were preparing for the worst, but hoping for the best. We prayed. We called everyone. We hugged, kissed, and held hands. And then we waited.
Around 7 PM on Tuesday, Dr. Angela Richardson, the resident of Dr. Morcos who had done his intake on Friday, arrived in his room to shave his head in preparation for surgery. As you can see, we were in good spirits. Hopeful. Light. We knew were in good hands, in the right place now.
Dr. Richardson applied the fiducials to Rob's head, letting me mark their locations in case any fell off. Then he was whisked off for a pre-op MRI, with the fiducials in place, so that Dr. Morcos and his surgical GPS would know exactly where to go the following morning in the Operating Room.
Early Wednesday morning, around 0530, Rob and I were collected and delivered to pre-op to prepare for surgery. Anesthesiologists, nurses, neurosurgeon, neurosurgical residents all came to see Rob and do their last evaluations. I took his glasses, kissed him goodbye, and was escorted by a hospitality representative to BUPA, the International Hospitality suite (for VIPs, I guess, I don't know) to wait. Dr. Morcos had told us on Friday that the long part of surgery would be getting in to the depth of the brain, about 15 mm, where the tumor was situated. The actual extraction of the tumor was the easy part, he said, and would only take about ten minutes. On Wednesday, as I was leaving, he said the whole thing would take about three hours.
At the time, I thought that seemed like forever.
I was able to get updates from the OR, via the hospitality staff, every two hours. Two hours took an eternity to pass! I was there at the desk, by the phones, exactly 120 minutes after the official start time of surgery, which was four hours after I had said good-bye to my husband. He was supposed to start at 0730, but it was 0924. At 1124, I was told that it would be another two or three hours, but that things were going well.
At 1324, hours into surgery and roughly six hours into anesthesia, I was there again. I had napped, unable to do much else but wait. This time, I was told there were still hours to go, but that things were going fine.
What in the world was going on?! I had no idea. But I was shaken to the core.
I checked back again and again and again, updating family and friends as I learned new information.
Finally, nearly 13 hours after I was escorted out, I was visited by another resident of Dr. Morcos. Don't ask me his name; I'd know it - and him - if I saw it - and him - but it's a long Indian name and I was physically and emotionally exhausted at the time. He was smiling and friendly. I was not.
"WHAT TOOK YOU SO LONG?!!" I demanded right away.
He was expecting that, fortunately. There is a significant difference, after all, between three hours and thirteen
Rob was prone on the operating table, with Dr. Morcos and his tools entering through a long incision from the crown of his head to the middle of the back of his neck, for hours and hours under general anesthesia. They had expected to be able to get in and scoop out the tumor fairly easily. However, the Cyberknife radiation had fused the tumor into the brain tissue, essentiallly gluing it in place in the brain, and the neurosurgeons needed to slowly and tediously chip away at it, piece by piece, bit by bit, as carefully as technology allowed.
But they got it.
Now, it's Saturday afternoon, some 2½ days after surgery ended, and I am preparing to go up to visit Rob in the hospital with the kids. He's having some issues with his vision, his electrolytes, and his blood pressure. He's been out of bed walking, with the aid of a physical therapist and a walker, which he'll also need when he comes home. His head is heavy on his weak neck now, and he lists to his left side. His appetite is also weak... but his mind is strong.
He's still MY Rob. He's still mentally there. He's full of piss and vinegar, humor and wit, and also, love and affection for us. Time will tell how this will play out, but I am faithful and confident that he will be well again. Healthy, functional, and happy. Smart. Funny. Agile. My Rob.
I'm so thankful to Dr. Morcos and his team. So grateful. Dr. Shifforbrains... well. Never mind about him.