So, there I was. A patient at Johns Hopkins hospital with two different brain surgeons presenting two very different options to me for the exorcism of Baby Jesus.
Dr. Alexander was suggesting that a biopsy was the best course of initial action. That since no one was quite certain exactly what kind of tumor with which we were dealing and it was certainly not responding to treatment the way one would expect, that taking a small sample of the tissue would be a non-invasive way to determine what it was and then we could create a treatment plan. It would require that they drill just a very small hole in my head.
Dr. Tamargo was far more aggressive and direct about his course of action. He looked me in the eye and said, “Whatever it is, it should not be there, right? So it needs to come out. Period. We need to cut open your head and take it out. The greatest concern is that the location of the tumor is in the part of your brain that also holds your memory. There is a chance that there may be some tissue loss or damage and you may not remember who you are after the surgery. Still, you can’t live with a tumor like that in your brain. It needs to come out.”
I was left to contemplate and weigh the two options. Biopsy just a small fraction of the tissue or cut open my head and remove part of my brain. The second option could also result in me no longer actually knowing who I was. Contemplating the life I had led thus far, option number two in some ways felt like a gift.
Besides, Dr. Tamargo had said that I couldn’t possibly live with a tumor like that in my brain. Whatever it was, whatever was causing it, whatever the types of cells, it needed to come out. If it meant that I would have to learn my life over again, well, it was a risk I was just going to have to take.
As news of my decision and the resulting possibility that I may not remember whom I was scattered out among my friends, the telephone in my hospital room began to ring incessantly. On the other end were people from all facets of my life, stringing together treasured memories of my life like a jeweled necklace that only I could possibly wear. I truly felt loved while I lay there in that hospital bed. Loved and cherished completely.
At the request of the doctors, my mother brought in photos of my life thus far and created a collage on the wall of the hospital room. The thought was that we would use it after the surgery to stimulate my memory, if there was a memory, to recall and perhaps remember moments, fragments, pieces to create a whole.
The night before my surgery, as I lay spooning in my hospital bed with S, all other visitors gone, contemplating that the next day I may not even recognize him, one of the very sweetest and best people who had shared so much of my life thus far, the phone rang one last time. It was BamBam. With some musical guests.
To my shrieks and squeals and applause, the dolce notes of Ripple came floating over the telephone wires along with those lovely harmonies of Jerry and Bobby and Phil’s singing voices. Tears streamed down my face and I know this is a moment that could only really be appreciated by those who loved that band and those boys the way that I truly did. They sang and then they “fared me well” promising me that the music would help me to remember me. Jerry was especially encouraging and reminded me to just listen to the music play. I will always treasure that moment and that very special band.
I do not remember sleeping much that night. The nurses came for me around 5:00 the next morning and my mother was already there with her extra strength maternal hugs. Dr. Tamargo had told my mother and me that this surgery was going to take all day. That it was complex and invasive and that she would be waiting a long while before he would be sharing any news with her. My mother's best childhood friend arrived from Connecticut to sit with her, to be her support. I said my goodbyes to both of them and was wheeled on the bed down the hallway to Neurosurgery.
I had decided the previous day that I would shave my head completely for the surgery. My hair at the time was long, thick, curly and reached nearly to the top of my butt. It was just hair. It would grow back.
Everyone that morning was so chatty. I remember we talked about truly shaving my head. The guy who did it was sad to do it and asked me again if I was sure I wanted my whole head shaved? I joked with him about the new fashion statement I could make with a half-shaved head. How it would be all the rage among Deadheads. Then squeezing my eyes shut, I begged him to please just do it.
After lots and lots of more quiet buzz and activity, honestly, all I remember is the anesthesiologist telling me to count backwards from ten. I said the number ten, ni…And that’s all I remember. Until Dr. Tamargo was waking me up.
“Jennifer, it’s Dr. Tamargo. Can you hear me? I have very good news.”
“You do?”
“Yes. It wasn’t a tumor!”
“Not….a….tumor?”
“No. It was a very, very large blood clot. I removed it. You’re going to be just fine.”
“You guys are awesome! Can I have some lemonade?!”
My mother, who was sitting vigil with her best friend and the gaggle of musical boys in the surgery waiting area, expecting to be there all day, was quite shocked when a nurse approached her and was told that Dr. Tamargo would be out to see her shortly. I had been in surgery for about 3 hours. My mother, because she is my mother, was certain that I was now dead.
The doctor came out with a huge smile on his face.
“It wasn’t a tumor. Not a tumor at all. It was a very, very large blood clot. Did you know that Jennifer has a dent in her head?”
All those head injuries had actually saved my life. It’s amazing to think, honestly, that a drop on your head when you’re just six weeks old could turn out to be the very thing that one day saves your life. Every experience, even the most tragic, holds a gift.
What had appeared as a large mass in my head was actually a very large blood clot. A blood clot that had not actually burst because I had a dent in my skull. The dent was acting as a cradle for the Baby Jesus. And as the clot grew larger, expanding, creating pressure and pain, but not bursting beyond its arterial walls, that dent kept it contained.
Dr. Tamargo had cut open my head and discovered this large angry clot where he expected to find the tumor. He had removed it and had repaired the artery using some plastic clips. He took a biopsy of a small amount of the surrounding tissue. Then he put my head back together.
Of course, because no brain tissue was truly removed, no tumor even existed, I woke up and knew exactly who I was. For better or for worse, my life, my memories, my soul was exactly as it had always been.
I spent two days in ICU with tubes coming out of all kinds of places (the freakiest for me was the one that went through my wrist, up my arm and into my heart) suctioning and slurping and bleeping away and then just like that I was back in my room looking like I was practicing to be a mummy for Halloween with my fancy headdress of gauze.
My recovery from that point was fairly quick. My head, free of the Baby Jesus Clot of Demise, no longer hurt! I could see and I was no longer having hallucinations or seizures.
Of course there was the matter of what actually caused the blood clot in my head and for that they brought in Dr. Bell and his team. Dr. Bell is a leading Hematologist at Johns Hopkins. He and his team ran the gamut of popular theories and possibilities and tests and then they concluded that I was the one in a million consumer that actually got a blood clot from using birth control pills. It’s a common risk for those who use them. It just rarely actually happens. Somewhere in the fine print that comes along with those Ortho Novum pills it mentions that clots are a risk. I had been taking birth control pills without incident since I was 18 years old. Who knows, honestly, why at 25 my body decided it was not longer going to play nice with them.
I was discharged from Hopkins on May 26, 1989. I spent about a week more at my mother’s home and then, then I flew back to San Francisco. Back to my life. I had survived. I was alive. I had a lot of living still to do.
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Those of you who have read this blog for a very long time know that this story doesn’t truly end here.
I am ending it here, though. For now.
Thank you, from the top of my head to the bottom of my toes and mostly from my very big heart, for being my audience and for listening. Always.
