"Brain Storm" Brain Blog, Part 2

"To experience peace does not mean that your life is always blissful. It means you are capable of tapping into a blissful state of mind amidst the normal chaos of a hectic life."  

~ Jill Bolte Taylor, My Stroke of Insight: A Brain Scientist's Personal Journey

 

With my employer, nature photographer Thomas Mangelsen and Peter Fraterdeus, 

Galena, October 2012, photo by Tracey Russett

Boxing Day – I had a partial seizure Dec 26, 2012 at about 9pm in Galena, Illinos. 

I was at home after a very stressful day at work at the Mangelsen Gallery, and making Alu Gobi – cauliflower and potato curry with rice and waiting for my companion Peter Fraterdeus to return from his letterpress studio in Dubuque. After he arrived we shared notes about our day and we were waiting for the curry to cook down a bit. I remarked a couple of times that I was having an odd feeling, kind of déjà vu – but I continued to stir the pot.

Suddenly I felt very strange – I was stirring the pot but I knew I was not really stirring, the motion of stirring was there but I was staring off into space and the spoon was not really down in the curry – and I was trying to tell Peter that something was wrong but I was not able to speak. He was saying something to me but I could not reply, and then he noticed that something was very wrong. I became suddenly extremely weak and dropped the spoon into the curry and grabbed the oven door handle – Peter held me and I slumped into him and he helped me to a chair but I did not even have the strength to sit. He helped me to the floor, got me a blanket and grabbed the phone to call 911. I kept thinking “No – don’t call the ambulance – I can’t afford this right now!” but then thinking “What is wrong with me – am I having a heart attack? Am I having a stroke? I think Peter MUST call for help – he is doing the right thing to call - why can’t I talk to him – I want to say something but only one word comes out at a time.” It was like my mind was in overdrive but my body was not fully connected or engaged and had its own agenda.  

By the time the paramedics arrived I was having spasms in my arms – worse on the left side - but still was thinking quite lucidly. The paramedic gave me oxygen and took my vitals and assured me that they were normal. As he asked me questions I was able to respond but the words came slow and brief. The paramedics brought in a chair stretcher and took me out the front door and down the tilted, steep and icy front steps of Peter’s front yard on a hill to the waiting ambulance. Even at the time I saw the humor in the situation and I felt quite calm as the paramedics struggled to get me down the steps and then worried about how they would get me into the ambulance parked uphill. They commented to each other that if they opened both of the ambulance's back doors, the inside stretcher would fall out and race down the street! So they finally asked me if they supported me I could climb up into the ambulance – how strange that they did not park facing DOWN hill – they live and work in hilly Galena every day! I was still weak but they helped me up inside. My first ambulance ride – pretty bizarre – I watched as we passed all the traffic lights, normally so familiar to me, but now seen while looking up, to the nearby Midwest Medical Center. Peter and my best friend Tracey Russett were with me at the Emergency Room, such a great comfort to me!

The ER staff took blood, did a chest xray, started an IV and I recall being unable to keep my annoyance in check at the pain of the needles – normally I would grin and bear it but I was quite vocal about my pain. I was given something to calm me down. I was getting freaked out because I did not know what was happening to me and was getting spasms in my arms and these were spreading to muscles in other parts of my body. My jaw was clenching until it ached and I felt chilled to the bone. I was given a CT scan and I don’t recall having the test, but I do recall that I was moved from one stretcher to another. The scan showed a 3 cm meningioma brain tumor in the right fronto-parietal parasagittal region, between the frontal and parietal lobes, along the important large sagittal sinus vein that runs between the right and left lobe from the front to the back of the brain. These tumors grow from the meninges - the covering of the brain - are most often found in women and are usually benign.

 

 Above are poor photos of creased print-outs of CT or MRI images of my brain, 
taken December 26 and 27, 2012. The top image was taken before contrast dye was injected. 
The scans are reversed, so the tumor was actually in my right brain.

The doctor on call at the medical center informed me that the “golf ball sized tumor” was probably not related at all to the incident that sent me to the ER – that it could have been there for decades unnoticed and that I could have it for the rest of my life without having any trouble. He sent me home that night with literature on panic attacks plus two sleeping pills in case I had trouble sleeping. I was told to come back the next day for an MRI. I was able to walk back up the stairs at home that night under my own power, and had two helpings of the rice and curry! I felt fine!

Later my neurosurgeon told me I had actually had classic partial seizure symptoms that should have been recognized, and any panic symptoms came from my freaking out because I was having the first significant seizure of my life. The partial seizure was definitely caused by the meningioma and this is a typical way that the tumor makes itself known. The seizure was really scary and I hope to never have another – I never heard of “partial seizures” before, so I did not have a clue what was happening to me. Looking back on it now, it was almost like a shamanic or out of body experience. The feeling of déjà vu I had before the seizure was what is known as an aura. I want to think about that feeling more and use it in my art. Below is a link to share information about partial seizures, often misdiagnosed and misunderstood.

You Should Know!: Symptoms of Simple Partial and Complex Partial Seizures 

I returned to the medical center for the MRI the following day and I found I don’t really mind the scan, I kind of enjoy the “house music” beat. I can often easily put myself into a meditative state and first I meditated but my thoughts flooded back and I found tears running down the sides of my face as I lay in the machine thinking about the past two years. This was  just two days past Christmas and I longed for my kids to be near me, I felt so alone but I did not want to tell them about this incident. I still was under the impression I had had a panic attack and did not want anyone to know about it because of the stigma that some people attach to such things. 

My nurse-practitioner, Margaret Dittmar, called to discuss the results with me. She sent me copies of the MRI and CT scans which I found fascinating, although it was quite a shock to see the size of that growth in my head that had been there for some time without my ever knowing. Margaret referred me to a neurosurgeon giving me options to go for treatment in either Iowa City, Chicago, or the University of Wisconsin hospital at Madison. My first thought was to go to Chicago since I lived most of my life there and still have extended family in the area, but since I thought I may be put on watch and wait I might not want to inform my mom of the condition unless surgery became inevitable. Since Madison is closest to Galena, I instead asked to see a surgeon at UW. The university chose Dr. Robert Dempsey as the best fit for my condition and how fortunate for me that I was placed in the hands of the very best, the head of the neurosurgery department at the University and a very kind and gentle man of spirit. My first visit to Dr. Dempsey was on Wednesday January 16, 2013. It turns out I have a friend whose husband was operated on by Dr. Dempsey several times and had rave reviews for him. Also, our Chicago area dentist who has been a lifelong family friend also knows Dr. Dempsey because their wives were roommates in college! 

Video of my neurosurgeon, Robert Dempsey, MD, speaking at UW Health  

It was decided by the doctor that resection of the tumor was needed. I asked if I would not be a good candidate for watch and wait, but Dr. Dempsey said that in his opinion the tumor had already remained too long and was already affecting my motor skills and vision on the left side. It was not clear if my depression or any other personality changes could have been caused by the slow growing tumor. The doctor apologized that my handwriting would not improve post surgery - darn! I did shed a few tears once I knew I would have to have a craniotomy on February 8, 2013 - mostly because I did not want to have to tell my mother about it. In the end Mom was as strong as always, and she was also grateful that I had such a great surgeon, and an Irishman too!

The doctor prescribed Keppra to control and prevent seizures for before and after surgery. These were difficult to adjust to at first, making me very fatigued. After a week or so of taking the medicine I felt stronger and also realized that I must have been having minor partial seizures for a while because I no longer had spasms or stabbing pains in my left arm. 

A high frequency MRI at University of Wisconsin was scheduled for January 23, 2013, so that the doctor could better map out his plan for surgery. So we returned to Madison the following week. This MRI was felt more deeply than the first – I could feel the scan go through particular areas of my head – I felt the waves go through my eyes and I could tell when the scans exited out the top or one side of my head and past my ear. It was not painful, but a definite vibrating sensation. I am really curious about the MRI images and how my head looks inside, and spent more time researching the workings of the physical brain, what areas affect different parts of the body, language skills, vision, etc. I watched videos like the TED talk by Neuroanatomist Jill Bolte Taylor about how it feels to have a stroke. I am more aware of the power of the right brain. What an amazing organ, our beautiful brain! I mourned about the brain injury that had already taken place without my knowledge, I fretted about a possible loss of vision or creativity, but at the same time I was grateful that the growth was found and was curable, and most likely benign!

Feb 2, 2013 My post on the Meningioma Mommas Facebook Group: “My Meningioma has been throbbing tonight - he must know he will be history by this time next week. Bye bye baby! ;-) I don't recall having this specific sensation before I was diagnosed - but now, knowing its location - there is no doubt that is where that "beat" is coming from. I just hope M has not been the source of my creativity spurt of the past few years because my art is going to suffer if so. I feel there have been some deficits recently too. I expect healing to be slow and will try to be patient with myself. The spongy brain will slowly grow back into the space where the tumor once sat, but there will be residual swelling post op and the damage from compressed blood vessels will repair more or less over time, although some damage will never reverse.” 

I am working on one more blog post about the surgery and recovery. I will be on disability for two months post-op. There is still time to give to the Alice Recovery Fund and there will also be an art auction fundraiser in Galena, Illinois at Miss Kitty's Grape Escape! Thanks to Joe and Lydia at Pinder Pottery. Thank you to all for the many ways you have shown your love and support! It has helped my state of mind and healing - I am so grateful!

 

Time to call on the Butterfly Muse! 

photo and concept by Bob Lieberman for the Artists of Galena photo project 2013