Author: Alexis Y

I could write a whole book on my biopsy results, because this turned out to be an epic saga. That said, the preliminary results were an important beginning.

My results came back in stages, with the information from the pathologist who looked at the cells directly under a microscope coming back first. This report’s results were quite unexpected for me. They said that my cells looked abnormal, but the pathologist could not find any evidence of malignancy. Specifically it said “Mildly hypercellular brain parenchyma.  No definitive tumor identified,” and went on to say that in order to exclude a tumor the DNA sequencing results were required. Those were in progress, so I had to wait for them. Stains of the slides for tumor markers were negative.

The next set of results were further negative stains. At this point my surgeon called me, excited, and said he didn’t think I had a tumor. I asked him about the sequencing results and he said we would have to wait and see about those.

During this time I had met with two oncologists and picked one. I asked the oncologists about the preliminary results, but they were not convinced this was not a tumor. I remember multiple doctors in this process asking me, “well what is it?” when I suggested it might not be a tumor. I thought that is what they were supposed to tell me. Needless to say I went from hope to anxiety pretty quickly.

After three weeks my sequencing results came in and they were almost entirely negative. There was one abnormality that they pointed out, a suggestion of monosomy 9. That means that some of my cells seemed to be missing one copy of chromosome 9. The report said that this was of “unknown significance” and my research indicated that though it was sometimes seen in tumors, it was not considered a driver mutation. My surgeon thought I was ok.

My surgeon turned out to be a bit of a guardian angel. He was available before the oncologist so I went to see him first. He showed me the MRI and talked about how its location in a language region made it impossible to remove. He suggested a needle biopsy and could schedule it the next week. I had a lot of questions and he was willing to answer all of them. At this point I knew that the suggested diagnosis was bad and that total removal was my best bet for living longer. I was understandably upset that he thought it was inoperable. I asked him about how long I would survive and he said patients like this usually live ten to twenty years. I went home with a cloud over my head.

We told our families about the diagnosis and arranged for my in-laws to stay at our house with the kids during surgery. I told my son I was sick and needed to go to the hospital to get better. He was five so that’s the extent of what I thought made sense to share. I cried a bit each day.

The next week my husband took me to the hospital. They had me take showers with antibacterial soap at home.

At the hospital I had about two hours of preparation to do. First I had to do a wipe down of my whole body with alcohol wipes to prevent infection. This was after two showers with an antibacterial soap, hibiclens, the night before and on the morning of surgery. I had to change into a gown, go over my medical history again with a nurse, have a blood and urine sample taken, and talk to the surgeon, and the PA. At some point a nurse realized I didn’t have any mark on my head. Apparently they are very serious about writing in marker (initialing) the side of the head for surgery. I suppose drilling into the wrong side would be quite bad, and I imagine it happened somewhere at some point. They had to call the PA and get her back to my gurney so she could write her initials on my left temple. I have since spent days trying to rub off the permanent marker.

I left my husband and was wheeled down to the OR by Jerry who called me his Uber driver. I told him I would give him five stars. The OR itself was cold and frightening. It was in a brightly lit basement room like something out of a SciFi movie. There were large, circular contraptions hanging from the ceiling everywhere. Lights I assume, to make the shaving, drilling, and seeing of the brain easier. I was lifted by a machine with hooks to the operating table and immediately started shivering violently. I was so cold in my little gown and socks. The nurse and anesthesiologist covered me with blankets right out of the oven and I relaxed a bit. The anesthesiologist asked if I was active because my heart rate was so low, 62, but it took me a minute to realize he was talking to me. I had lost my sense of subjectivity. Everything around me made me feel very much the object of something, no longer in control. I told him I was a runner just before I was given oxygen and he pumped the anesthesia into my IV. I tried to keep my eyes open, but was out in seconds. 

When I woke up I had mild pain behind my ear and I was shaking with cold again. The anesthesiologist accompanied me to the PACU (post anesthesia care unit) with a very sweet nurse named Karen. They bundled me up with even more blankets and asked me some questions. I was relieved that I could talk and understand them immediately. They wanted me awake quickly so they could do neurological tests. After a few of their questions the anesthesiologist left and Karen and I conversed casually for forty minutes as we waited for my room to be ready. She had been a nurse for twenty-seven years and had traveled around the country until she and her husband, also a nurse, decided to settle in Seattle. I told her I had not done anything for twenty-seven years straight. With this diagnosis I desperately want to be able to say that some day I have had a career, or been married, or been a mother for that long and I’m still going.

“What does a seizure feel like?” I asked my neurologist. He didn’t really have an answer. “Loss of consciousness or confusion,” he said. That’s not what I was experiencing. Words were stuck in my head. I could read them there, but not pronounce them, or I heard them and understood a general gist, but not the exact meaning. I tried to push them out from that state of stuckness into a coherent sentence, but they wouldn’t move, so I would think about similar concepts or something completely different and eventually get unstuck. After 30 seconds, a minute, I would be normal again. I would remember what I had forgotten. The last time it happened I somehow convinced myself to stop thinking about the words, and other ones came out of my mouth, a transition, “anyway” and onto another topic. 

My brain is my trade and has always been my greatest asset. I was desperately afraid of losing it. When I started to have transient episodes of aphasia, I had dark fears of having dementia, early onset Alzeheimer’s or something in that vein. I was only forty-one. I had two very young children. I was healthy, a runner. None of it made sense. I mentioned it to a few people, they said it was a normal part of aging. My doctor did some blood tests and nothing else. 

I didn’t want to push too much. I hoped they were right. I also didn’t want to rock the boat. I just kept on living my life, going to work, taking care of my children, training for a 10k. The fourth time it happened I decided to do something about it. I was upstairs with my children in the evening. They often like to play monster and run from their father or I. The two-year old was yelling “Monster, monster” and running. I was sitting down, but suddenly couldn’t understand that word. That scary thing she was afraid of. I knew it was scary and big and imaginary. I knew she wasn’t afraid, but I couldn’t quite understand her, not in the traditional sense. I wanted to tell her to run, to encourage her play, but I couldn’t remember how to say it. Then it was over, I could speak and understand again. That was a seizure, one of my early ones, called a partial temporal lobe seizure. These types of seizures often affect language and happen more rarely than seizures in other areas of the brain, meaning I only experienced them every one to two months. They did not involve involuntary movements or loss of consciousness so it was no surprise that I did not know what it was. 

It turns out my PCP also did not know what it was. Despite being a doctor she asked me some questions about stroke symptoms when I told her I was concerned about this. Then she pretty much dismissed the matter. She asked if I would feel better if she did some blood tests. I reluctantly agreed, though I thought I should see a neurologist. That was the end of it for four months. Then it happened again in January and I sent her a message insisting that I see a specialist. She referred me to a neurologist and got me an MRI. 

That MRI changed my life. When the results popped up in my Mychart I didn’t look at them immediately. It was the weekend, I didn’t want any bad news if there were some. On Monday morning I looked and was shocked that the report said it was a brain tumor. It was early in the morning and I woke up my husband to tell him. Unsurprisingly I spent the next day upset and worried. I of course looked up the type of tumor the radiologist thought it was and found that it was slow growing, but incurable. I talked to a PCP (not mine who was on vacation) and cried throughout the appointment. He referred me to a neurosurgeon and an oncologist, and we waited for a week to get more answers. Waiting was something I would have to get used to I found. Answers were not to be evident.