Nine years ago, after an autumn of odd symptoms, I had a CT scan and then an MRI and then a brain biopsy. A week later, when the surgeon removed the staples from my head, he told me I had glioblastoma. The biopsy did not contain any cancerous cells, and yet I was told I had cancer and referred to a neurosurgeon and a neuro-oncologist at a nearby teaching hospital.
In the spring of 2015 we got a puppy. She was a year old, a mix of black pug and tasmanian devil, as far as I could tell. She was bitey and impulsive and she pulled when walked on a leash. We named her Matilda but called her Princess Mayhem. She was loved and chosen.
Whenever I walked our two dogs, I always put Matilda in my right hand, because my right hand is dominant; I figured that gave me a better chance of keeping her under control. On October 8 of that year I woke up and it felt like my right arm was still asleep; I had decreased function of fine motor skills in my right hand (trouble writing, manipulating small objects like paper clips, fastening the dogs' leashes, etc.) I figured I had slept on it funny, or that it was a resullt of Matilda having pulled on that arm for months. I went to work as usual. After four days and no change in symptoms, I went and saw my primary care physician, who shrugged and referred me to an orthopedist. Two weeks later the orthopedist performed a series of tests, including a nerve conduction study, which consists of sending elecrical impulses through my fingers and right arm, and measuring the results. The thumb was the most painful, but none of the shocks lasted long. The orthopedist agreed with my PCP that my reflexes and nerves were functioning properly, and scheduled me for a followup visit on Nov. 25, if my symptoms had not improved.
I continued to go to work. My gross motor skills were fine, and I had no trouble driving. I performed tasks with my left hand or asked for help. Eventually, I started having students write notes on the board for me, and a colleague took notes in staff meetings. On one occasion that same colleague cut up the meat we had for lunch for me. It was annoying, but I made do. It may seem weird to you that I was not more proactive, not more aggressive in trying to figure out what was going on, (it seems weird to me now, in hindsight), but I had been told by two doctors that I was okay, and I figured I would just wait for the follow up test.
On Friday the 13th of November, I woke up and my whole arm and most of my right side felt numb. I went to work as usual, and noticed problems with balance and clumsiness. Writing this now, I feel like I was that frog in the pot of hot water, not noticing that I was getting closer and closer to being boiled. I napped through most of the weekend. Decreased feeling on the right side and balance issues persisted through the weekend. I called my PCP's office Monday morning and got yelled at by the nurse for not going to the ER sooner, since I could be having/have had a stroke.
That was the first day I missed work. I know all these dates because I kept a record at the time, for insurance purposes. My girlfriend and I went to the ER (I drove), and I spent the next few hours getting a CT scan and an MRI. The results came back; I had some kind of lesion on my brain. I met with a neurologist, who said he would schedule a biopsy for later in the week. He would be looking for signs of stroke, glioblastoma, MS, or lymphoma. I was 48 years old.
This was scary, of course it was scary, but the kind people at the hospital kept offering me "calming medication", and I kept saying yes. I sent a text to my boss at work: "In ER. Possible brain tumor. Probably wont be in tomorrow. Will send sub plans when I get home." I called my parents; I texted at least one friend. My girlfriend is a very comforting person, and was actually keeping me laughing; we share a dark sense of humor. For one of the tests the hospital wanted to give me, they had to acertain that I was not pregnant. My girlfriend and I had been together for 23 years at that point, but our word was not good enough; I had to take a pregnancy test.
At some point, they let us check out and go home. I had prescriptions for steroids and anti-seizure medication, so we stopped at the pharmacy on the way home. I'm sure I didn't drive. We wandered around the drug store waiting for my prescriptions to be filled--I was still quite floaty on the ativan. At some point during our wait, I asked my girlfriend if she would feel better if we got married, since it had recently become legal in our state and it appeared that we were going to be in and out of hospitals in the near future. She said yes, that would make her feel better; how about me? I am nothing if not romantic. My response was "I wouldn't object."
The next day, I returned to the hospital and had a brain biopsy. My parents had driven up and gotten a hotel room and were there with me before the surgery, as was my girlfriend and a couple of friends. I don't remember much from that day. I remember I kept apologizing to my parents and girlfriend; I don't remember crying. I'm sure I felt scared, but I think I was in shock. I also was pumped full of "calming meds". My father had looked up details about brain biopsys online and was aware of the odds of something going wrong; I very pointedly had not, and was not. I know I signed release papers--the nurse who went over them with me was the mother of a boy I taught a few years previously--but I don't remember details. I remember being wheeled into the OR and the light overhead being very bright.
I spent the night and then went home; I had a wedding to plan. The diagnosis on the discharge papers says "Brain tumor, astrocytoma". I have a big notebook from that time, which filled up with insurance papers and printouts from hospital visits, and also greeting cards, photographs, and the plans for our wedding--a gathering of ten people on our sunporch--that took place ten days after the biopsy. It was two days after Thanksgiving, and three days after I had the staples removed from my head. My girlfriend named the notebook Oncology Honeymoon, which we thought sounded like a Kurt Cobain album.
The day the surgeon removed the staples from my head, he told us about glioblastoma. The lesion in my brain was about the size of a half-dollar coin. He referred me to a neurosurgeon and neuro-oncologist at the nearby teaching hospital. My parents and my girlfriend were with me at the appointment; my girlfriend had to fill out the paperwork for me because my handwriting was so poor at that point. My dad's in a wheelchair, and I was pushing the wheelchair because it gave me something to hold on too--I wasn't very steady on my feet. People kept assuming he was the patient, because of the chair.
Eventually, I met with the neurosurgeon and neuro-oncologist. A five-hour brain surgery was scheduled for December 14th. Apparently, I would be awake for part of it, so that the good doctor could make sure the parts of my brain that controlled speech were intact.
That whole time period is blurry for me. I was sleeping a lot during the days, and not sleeping at night. It was when I was alone with my thoughts at night that I was most frightened. I was raised Methodist, but don't consider myself christian; I don't pray. However, I found myself singing the Johnny Appleseed song over and over to myself, and I found it soothed me. Two years previously, my wrist had been bitten by a dog, and I needed eighteen stitches. That had been traumatic. Back then, when I was trying to sleep at night, I would repeat the doxology over and over to myself. No athiests in foxholes, I guess.
It was hard to not be working. At the time, I was teaching math and science at a small private school. It was hard to let go of that, to be on temporary (but indefinite) leave and to not be able to drive. My world got a lot smaller; the number of areas where I felt I had control, or at least agency, shrank dramatically. My job became taking meds and keeping track of what appointments were next. At the same time, my girlfriend was trying to work from home, take care of our two dogs and cat, deal with my parents (who had, with their dog, moved in to a nearby residence hotel), and comfort me. I was scared and volatile and sterroidal and had very little stamina.
There were good moments; we kept noticing, in between all the uncertaintly and stress, little instances of joy and love and contentment. A friend told us that they were always there, but it was because of the extreme contrast with all that was going on that we kept noticing them. Also, I wasn't in any pain. In some ways the dog bite two years earlier had been harder, because then I could see the stitches and had to bathe the bruised, broken skin twice a day. I couldn't see the hole in my head, and I certainly wasn't poking at it. If things got overwhelming, I just went back to bed.
The wedding was nice. My parents and brother and sister were there (mom had called my brother and told him to come home for Thanksgiving; that Christmas, post surgery, might be very difficult) and my girlfriend's brother and sister and her partner were there, and I had found an officiant on the internet who could come on short notice. We both wore jeans; the animals wore bow ties. At my request, the officiant read from the 2003 Massachusetts Supreme Judicial Court Decision. Mom ordered a bunch of food from Kroger. My bridezilla demands were for french onion dip and pies rather than cake. My spouse loves crust, and neither of us like cake very much. We had pecan and fruit and coconut cream pies. Afterward, I took a nap.
I had actually called a local jewelry store from my hospital bed to check and see if they had the Alex Sepkus ring I wanted. They did; my sister took me downtown a few days before the wedding to pick it up. My spouse used a ring I had given her 23 years before, the summer we started living together.
The wedding was on a Saturday; only ten people attended, but we had a sort of open house later that day and Sunday. Lots of friends and family stopped by. I inherited my love of jewelry from my grandmother, and had quite a collection of rings. That weekend and over the next few weeks, I gave almost all of them away.
I was scheduled to have brain surgery on December 14th. I went to an outpatient facility for a functional MRI on December 4th. After I had taken the zanax ("Are you claustrophopic?" "I don't know, but I don't intend to find out inside a giant, incredibly loud magnet") we figured out that they had sent me to the wrong place--the facility I had been sent to didn't perform fMRIs. I was remarkably calm about the snafu (zanax); I just ate the animal crackers they offered me and my spouse drove us home. I may have done a little MC Hammer dance in the oversized scrubs they had given me to wear in the MRI. It was the drugs, man. I was giggly and silly and newly married, and trying to find lightness in this completely overwheming situation.
The new fMRI was scheduled for a week later, the Friday before Monday's surgery. It was hard to be patient during this time. I had seen the MRI images of this white mass in my brain; I wanted it out. I had been told that there might be tendrils that extended into other parts of my brain; at night, when I couldn't sleep, I pictured the tumor as one of those fried noodles that comes when you order egg drop soup. Hard, crunchy, self-contained, no tendrils. Easily removeable. I didn't believe that my thoughts about the tumor were going to change it in any way, but then again, it wouldn't hurt to try. I couldn't even think about being awake for part of a five-hour surgery. I just hoped that I wouldn't be too awake, and that I wouldn't remember it afterwards.
We went to the hospital proper for the fMRI, my parents, my spouse, and I. I was still apologizing for putting them through all this. When the nurse put the I.V. in my arm and flushed it with saline, I thought I was going to be sick. That was one of the few moments of physical discomfort. The fMRI itself was kinda interesting; there was a screen in front of my face and I was asked to move my fingers in certain ways, or to complete the sentence shown on the screen. When the screen showed XXXXX I was supposed to not think about anything. Do you know how hard it is to not think about anything? I think I failed that part.
When it was over, we left that part of the hospital and went to the cafe. We had an hour or so before we were scheduled to meet with the neurosurgeon, who would review the results of the MRI with us. Eventually we left the cafe and walked through the pedestrian tunnel to the building across the street, and through twisting corridors until we got to the neurosurgeon's office. I sat on the examing table, Mom and my spouse found chairs, Dad wheeled in. The neurosurgeon came in and told us that the lesion in my brain had decreased in size. Glioblastoma would not have responded to steroids in this way; whatever the lesion was in my brain, it was not cancer. The brain surgery was cancelled.
I remember Dad looked at me, delighted with this new information, and told me "Good job." As though I had thought my way out of cancer.
Over the next few weeks, I had a spinal MRI to rule out multiple sclerosis (looking for lesions in the spine). No signs of MS. I had a lumbar puncture, which left me debilitated for about a week. No sign of MS or infection. By the end of December I finished tapering off the anti-seizure medication and steroids. I spent two months in physical therapy, during which strength and dexterity improved; I could once again brush my teeth and eat right-handed, work spray/pump bottles, paper clips, saftey pins, etc. My handwriting and typing skills took longer to recover; I don't think my handwriting ever really fully recovered. By the end of January I went back to work part time.
Three months later I saw a neuro-opthamologist (no signs of MS or other problems) and had a follow-up MRI ("Findings favored to represent demyelinating disease, continued follow-up is suggested.”) I had MRIs every 6 months for a while, then every 9 months, and then once a year. The mass in my brain, whatever it was, shrank. What's mostly visible on the MRIs now is the burr hole from the biopsy. The doctors don't know what the mass was, but it hasn't come back.
I don't think about this so much any more. So much has happened since then. I've changed jobs three times. Menopause, which appears to be never-ending. We had a pandemic. I've gotten older and had to go on medication for high blood pressure and high cholesterol, both which run in my family. One of the MRIs turned up evidence of a tiny stroke, a transient ischemic attack, that I wasn't even aware of having. I improved my diet and started taking low-dose asprin. I now have a CPAP machine, which is supposed to improve the quality of my sleep. Every so often, when I get especially tired or stressed out, the right side of my face and lips feel numb. Or my right arm, or sometimes my forehead. If it's something that has felt that way before, I pretty much ignore it. Last month my tongue felt tingly, and I felt pressure on the back of my head. Worried that it might be a stroke, my spouse and I went to the ER, and I ended up being admitted after a very long night of waiting. I had another CT scan and MRI (this was in the same hospital where everything started) both of which came back clear. Sometimes I feel like the boy who cried wolf, but at the same time I don't want to ignore what may be a stroke, and make things worse.
I think about this the most in the days leading up to my yearly MRI, and it usually recedes from my thoughts after I've seen the neuro-oncologist (a wonderful man who kept me on his caseload, even though it wasn't cancer) and been given the all-clear. I usually cry on the way home from the appointment; sometimes I cry during the appointment. This year, for really the first time, I've been feeling incredibly angry at the neurosurgeon who did the biopsy and diagnosed glioblastoma. Hence the title of this node. I've been in therapy a few times over the years, and I felt like I had put this to rest, but the strength and ferocity of my anger this year caught me by surprise.
I sought help, and the woman I spoke to suggested that it might do some good to write the neurosurgeon a letter, whether or not I decide to actually send it. I thought as a first step, I could write it here. I actually started a draft of this three years ago, but then abandoned it before it was done. I wish I could wrap this up with a neat little bow, but that doesn't seem to be in the cards. Really, I feel like I need to find a support group for people who thought they were going to die, but didn't. Wish me luck.