The preamble

In the last three weeks there have been a host of new symptoms developing in my body. I don’t know if I was ever fully aware of how long the list was until we actually wrote it down in preparation for today’s appointment with the oncologist.

• Terrible night sweats and hot flashes throughout the day
• Creepy body spasms that happen as I sleep
• Random swelling in feet, hands, face, and legs
• Random tingling/extra numbness in legs or feet (different than my ‘normal’ leg/feet numbness)
• Almost daily hot and throbbing headaches that last only about thirty seconds
• Debilitating back pain
• And some issues with urination and such that I won’t talk about extensively here!

So we expected some bad news…in fact, we almost hoped that there would be some kind of explanation for the developing symptoms. What we both genuinely expected was that the lower new tumor had grown significantly. This wasn’t the case.

The tumor update in all it’s terrible glory:

At this point in time virtually my entire spinal cord is surrounded by a ‘tumor sheath’. I don’t currently have the actual vertebrae count, but it is most of my spinal cord and it has a layer of tumor around it and the best way I’m finding to describe it is with the word sheath or casing. Additionally there is a clear tumor mass where my original surgery once was. (to clarify this point, up until now they have been able to identify that there was a growing mass here but it could be tumor, it could be radiation damage, or it could inflammation. Today, for the first time it is very clearly and undeniably tumor growth) So we went from one tumor four months ago, to three tumors two months ago, to…well, I’m not even sure how to categorize where we’re at now. One giant tumor who is attempting to strangle out my entire spinal cord.

Treatment options

This is pretty radical growth in only a two month time period and necessitates changing our treatment approach.

Regarding treatment we will make a decision within one week. We need to move quickly but there are two factors that inhibit this. There are quite a few potential clinical trials that are very reliable and very hopeful (the reality is that clinical trials are not what they once were even a few years ago. They’re much safer, more successful, and more reliable than they’ve ever been before.) but a clinical trial would require waiting about a month to start…and we’re not sure we want to wait that long. The next, and likely option, is to use another drug called Avastin. This drug has been very valuable for central nervous system cancers and is not a bad option to pursue. Regardless it is sad to see one more thing crossed off our list of attempts:

1. surgery
2. radiation
3. daily temodar (chemo)
4. stronger monthly temodar (chemo)

The second factor is that we’re still waiting for results from an emergency brain MRI that I had done today. Somebody along the way goofed up and I didn’t get that piece of the scan done prior to our appointment today. So now we’ve got to wait until my doctor gets the results and calls me this evening with more information.

Where we’re at

I wish I had a good answer for this. I wish I had something inspirational to say…ok, lets be honest, I could very easily drum up something inspiring right now, I’m pretty sure of it. But I don’t want to. I don’t want to downplay just how shitty this news is. It is. It’s just terrible news. This doesn’t mean that I still don’t have hope that healing can happen. This doesn’t mean that I don’t believe that God is and will continue to tell a beautiful story in my life or death. This doesn’t mean that I’ve lost hope. It simply means that I’m sad and I don’t want to write that off, I don’t want to artificially push through it, I don’t want to disengage my emotions, I don’t want to do a disservice to the reality of where we are because I truly believe that if I’m unwilling to recognize hell for what it is then I’m less able to recognize its transformation into goodness when/as it occurs.

Pray for us as we talk to our kids about it. They knew that daddy had scans today and so we’ve made ourselves accountable to share with them results.

Thank you for your love and support.

peace.

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…