Today we’ll meet with my oncologist again. At this very moment she’s meeting with the local tumor board, discussing my MRI scans from yesterday. Who knows what we’ll find out, each time we’ve gone in for results we’ve entered with certain expectations that are sometimes accurate while at other times are incredibly far off. We’ll see what happens today!
Looking back over the last year here’s our journey of expectation as best I’m able to remember or capture it…
- When my only symptom was drop foot I assumed I had a strained ligament or something of that nature. I didn’t even tell Jess ’cause I genuinely assumed it was nothing. Eventually when I saw the doctor she was baffled regarding what was wrong (because of m lack of other symptoms at the time) and ordered an MRI just ‘because’
- Once other symptoms developed (namely some constant back pain and some leg numbness) I went into the chiropractor to get it worked out. I remember my mom and my wife trying to massage the points of pain in my back…turns out you can’t massage away a tumor…I don’t think!
- At my first MRI, done at a second rate little storefront office, they stopped the scan halfway through because there was a ‘bundle of nerves’ that they needed a better look at. They sent me to Clackamas to a stronger MRI machine to take a better look. I had no concept whatsoever what a ‘bundle of nerves’ meant or could mean and the idea of a tumor was still not in my mind.
- While it was supposed to take a few days to a week to get the results back, I got a call that night saying I needed to meet my doctor the next morning. At this point it finally sunk in that something more serious was up. The doctor shared with me that I had a tumor in my back but that she didn’t know much else ’cause it wasn’t her specialty.
- It was not until a few days later that we discovered that the tumor was, in fact, encased inside my spinal cord. We learned that it could be one of three types: a benign and self-encapsulated tumor (90% sure that it was this one), a cancerous tumor that was self-encapsulated and easy to remove (9% chance of this one), or that which we don’t speak of (no seriously, this last option was so bad and so rare that they saw no point in talking about it). So at this point I anticipated going into surgery and coming out tumor free. Cancer was not a part of the story.
- Post surgery I discovered that the tumor was most likely benign but it was not self-encapsulated and therefore impossible to completely remove. My friend made me a shirt that said “Still got it!” In my mind cancer was still not a part of the story.
- Only a few days before we left the hospital that the surgeon sat down with us and told us that I had cancer. We had no idea how bad the cancer was, but for the first time I realized that cancer was a part of my story.
- Waiting for pathology reports was a frustrating experience. Turns out its more of an art than it is a simple science experiment or test. The first pathology report tests said that I had a stage four astrocytoma (a glioblastoma or GBM). I knew this was bad but I’m not sure it sunk in how bad of a cancer this was.
- My first post surgery MRI revealed no tumor growth or metastasization. I remember being very excited abou this.
- A while later the Mayo Clinic changed their minds and downgraded me to a stage three cancer. Great news! At this point the expectation was that the daily radiation/chemo would get rid of the cancer completely but that it would return again sometime later…only to be killed again…so on and so forth.
- Squiggles were found in my brain. We didn’t (don’t) know what this means, they also refer to them as ‘artifacts’ but essentially they’re two dimensional lines in my head that are not tumors and might be nothing…but they’re there. The brain surgeon isn’t worried…but one can’t help but think about the fact that they’re there.
- The next MRI’s reveal that my tumor has grown. The original GBM (bad) diagnosis is reintroduced and affirmed as the more accurate cancer identification…crap.
- Due to unmanageable back pain in December I went in for an emergency MRI that revealed some more slight tumor growth.
- The next set of MRI’s were the worst. They revealed two new tumors in my spine. They’re tiny but they’re there. The immediate implications of this is that it further solidifies my GBM diagnosis and reveals the reality of what a GBM tumor can do (grow).
I’ve left out lots of pieces, lots of small parts of the story are missing due to my forgetfulness, or the fact that I’ve got to get my kids up so we can get them to school so that I can go get these damn test results so that I’ll have something to blog about later! (that last part was a joke…kind of).
It’s been a wild ride thus far. Personally I’ve found myself to have swung from genuine ignorance, to willful ignorance, to depressing awareness, to hopeful awareness, to numbness, to…well, to wherever I am now.
The tumor board should be finishing their meeting in about forty-five minutes to an hour from now. They could be looking at my new scans this very moment. I wonder what bullet point I’ll be adding to that list…