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Tom's Unexpected Journey
4/23/2017 Latest post:
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On Wednesday, January 25, 2017, Tom had a seizure. We were initially skeptical as to whether it was really a seizure, but one of Tom's friends convinced him he should call his doctor and get checked out "just to be sure". When he called to make an appointment for the next day, the woman on the appointment line said she thought Tom should talk to a nurse to see if should be seen sooner than the next day. So Tom called the nurse line and the nurse told him to go to Urgent Care or the ER as soon as he could.
We chose to go to the ER but still thought it couldn't have been a seizure; why would he have a seizure when all he had was a cold? When we arrived at the ER they took Tom to an exam room right away. They asked a lot of questions and did an exam and said they didn't think it was a seizure. The ER doctor said that it was probably something called "cough syncope" where you cough so hard you can pass out. But he decided to do a CT scan just to be sure. They brought Tom back to the exam room after the CT and the doctor came in a few minutes later. He said "Remember the syncope stuff we talked about? Well, you don't have syncope. You have a brain tumor."
What?! It felt like the air had somehow been sucked out of the room. Tom and I looked at each other and I'm sure we were both thinking about his dad, who died from a brain tumor 17 years ago. The idea that Tom's seizure could be caused by a brain tumor had never entered our minds. Not even after all that his dad went through. We were dumbfounded. The doctor held up a copy of the CT scan and my stomach turned over. I could see it right away. There it was. The brain tumor.
But seeing it didn't make it any easier to believe. It just seemed unreal. Needless to say Tom didn't get to go home from the ER that night. He was admitted right then and there. The next day (Thursday) he had an MRI and many tests and we met many doctors. They scheduled the surgery to remove Tom's brain tumor for the next day, Friday, January 27, 2017.
My sister Becky drove me to the hospital and stayed with me all day. Tom was in the shower when we got there -- the nurses were waiting in the hallway with the gurney, ready to take him to pre-op. He was a little scared but was holding up well. I was okay on the outside but a wreck on the inside. I wasn't in denial, but I was having trouble coming to grips with the fact that two people in my family had developed the same type of brain tumor. I mean, what were the odds? The neurosurgeon was very surprised as well. He said brain tumors weren't thought to be hereditary. But now that Tom had developed the same kind of brain tumor his dad had, the neurosurgeon recommended that Tom's brother and sister have MRIs as well to make sure they were okay.
Tom's surgery went very well. The neurosurgeon said he was able to remove ALL of the tumor as well as a generous "cuff" around the tumor because it was in a relatively "quiet" area of the brain. He didn't think Tom would have much loss of function from the surgery but he couldn't say for sure. He said Tom had several things going in his favor: he was young and had a robust immune system, the tumor wasn't in as critical an area of the brain as Tom's dad's was, he was able to remove all of the tumor, and treatments have advanced considerably in the last 20 years.
When Tom woke up he did have trouble talking -- he couldn't find the right words (aphasia). It was pretty frustrating for him. He also lost the peripheral vision on his right side. They don't know how much of his "deficits" are caused by the swelling from the surgery and how much are due to the loss of whatever brain tissue they removed. Only time will tell, but they think he should overcome most of his speech problems with therapy and his memory should recover pretty well after the swelling goes down. They're less sure about the recovery of his peripheral vision.
He was only in the ICU for 1 day and his word-finding seemed to get better each day. He was anxious to go home though. They started him on physical therapy, occupational therapy and speech therapy while he was in the hospital, all of which would continue after he was discharged. That day came on Tuesday, January 31, and Tom was VERY happy to go home!
After a few weeks of rest and doctor appointments and lab tests and blood draws in preparation for a promising clinical trial, Tom started Speech Therapy and Occupational Therapy (twice a week each) and Physical Therapy (once a week). That makes for a LOT of appointments every week! Between all the therapies and doctor's appointments and chemo/radiation, Tom has anywhere from 8 to 13 appoints every week for 6 or 7 weeks, averaging 11 appointments a week! And they're not all back-to-back. There are many days where Tom has a couple appointments in the morning, then a break for a couple hours, then another appointment at a different clinic or office, then another break, then another appointment at yet another location. It's very exhausting for Tom. And he is feeling the effects of the chemo and radiation as well. He gets extremely fatigued very easily and needs to rest often. His hair has started falling out. He has periods of queasiness (usually in the morning) and has lost some of his appetite. He is unable to work so has lost his income. Consequently he couldn't afford the COBRA payments to keep his health insurance so he had to switch to MNSURE.
However, in spite of all he's been through he remains very positive and has kept his sense of humor. He is bound and determined to beat this thing!