Just a Bump in the Road

About a month ago an old buddy from college, Geoff, reached out to me wanting to help us out financially. He is part of an organization called Midweek Run that helps to organize fundraiser races for individuals. I was very touched that he wanted to help out and that his organization was willing to put in the time and energy to put this together. We did the fundraiser run on July 11th up in Draper, just down the street from where I grew up. It was a humbling experience to have family and friends show up to support my family and me, not just financially, but emotionally and mentally. To know that we aren't in this fight alone helps. At times, this fight against cancer can become somewhat all consuming and it's nice to know that there are individuals we can turn to if we needed to. The race was a lot of fun! The weather was beautiful! In fact, the heat cooled off just in time for the race to start and the rain avoided us as well! The park was a great park for the run AND we even...

Well... It's been a rough few weeks, which is why I've struggled to keep up on the blog lately. Going back to the last couple days of June, I've really struggled with nausea and vomiting. For about five days prior to my arm surgery I didn't eat much. On Saturday June 29th, the vomiting began. I threw up a good 7 times that day. Then, on Sunday, I threw up another 9 times. Fortunately, come Monday the vomiting slowed down big time. I think I only threw up once that day. By the time Tuesday rolled around, the vomiting had stopped. Just in time for surgery! I was hoping I was done with the vomiting, and fortunately for the duration of my hospital stay there wasn't any vomiting. However, when we returned home, the vomiting started back up on Sunday. Not only did it start back up, but it was to the point that it wasn't stopping. I was becoming very fatigued and was having a hard time standing up on my own. At about 1:00 am on Monday, July 8th I was admitted to the ...

Caution: Some of the photos in this post may not be appealing to some. There is exposed muscle and bone from my surgery. Just a warning! So as I've mentioned before, I struggled with arm pain since even before my diagnosis. The pain was due to a tumor that was inside of my arm bone. The tumor was doing two things: it was eating away at the surrounding bone in my arm AND it was putting pressure on the bone that was still there. That combination led to some difficult pain in my arm. In order to deal with the tumor, radiation was the best course of treatment. However, there was concern from multiple oncologists that radiating the tumor would eventually lead to a large cavity in my arm bone. This cavity, along with the weakened surrounding bone, would put me at greater risk for a pathological fracture. The orthopedic surgeon said that these pathological fractures can be very tricky to fix and can, ultimately, be very detrimental. About the middle of June we met with Dr. Groundla...

Earlier this week I was able to speak with my radiation oncologist about the results of my spinal MRI. The purpose of the MRI was to determine if there were any visible signs of Leptomeningeal Disease. I was able to read through the reports before I spoke with her, but it's always better, in my opinion, to hear it from the doc. There were no visible signs of the disease in my spine, which is great news. That doesn't mean that I don't have the disease, it simply means that if I do have the disease it has not progressed to the point of causing serious issues. We had originally discussed doing a Lumbar Puncture if the MRI came back negative. The Lumbar Puncture would remove some of my cerebrospinal fluid and actually examine it for cancer cells. However, as I noted previously, I have already declined the traditional form of treatment and the treatment that my doctor has recommended if I do have the disease. Because whole brain radiation is off of the table, a formal diagnosi...

On June 13th I had a phone call with Dr. Burt. She informed me of the potential findings of Leptomeningeal Carcinomatosis, as well as the traditional form a treatment for that, which is whole brain radiation. With difficult news oftentimes comes difficult decisions...and that's what we faced. From the get-go, whole brain radiation has been something I wanted to avoid. I've come to understand the dangerous and debilitating side effects of chemotherapy and radiation. I'm not too keen on using those forms of treatment with my body. That being said, the targeted form of radiation seems to have minimal side effects on surrounding tissues and, because of that, I have been comfortable using that form of treatment. My biggest dilemma moving forward, if I do in fact have leptomeningeal carcinomatosis, is how to treat it. Keep in mind the following as you read through the two scenarios: the prognosis WITHOUT treatment is 4-6 weeks while the prognosis WITH treatment is 2-4 months. N...

2 Chronicles 20:15... "Thus saith the  Lord  unto you, Be not afraid nor dismayed by reason of this great multitude; for the  battle   is  not yours, but God’s." From the onset of this war with cancer, my life has been filled with peace. While storms have raged at times and new battles have emerged, none of it has impacted my peace. You see...this cancer is out of my control. And that gives me great peace. Does that seem ironic? Maybe it should to me... But it doesn't. When Dr. Burt told me of this possible complication, I think that it rattled a lot of people in my family and circle of friends. Only two to three months to live? I think it came as a shock. But the reality for me has always been from day one that this cancer could kill me at any time. So this idea of leptomeningeal disease didn't have an impact. It's par for the course, right? When I was diagnosed, I had to answer Elder Bednar's question of "Do you have the faith to NOT be healed?...

So on June 11th, I had my long day of appointments. They came with mixed findings and some unknowns. Dr. Burt wanted to have a couple of boards look at my results before a treatment plan was decided on. We were a little anxious to get going with things, especially since my BRAF inhibitor medications seemed to not be working. I didn't want to be going without a viable treatment for too long. Anyway, on June 13th Dr. Burt called me. She indicated that of the 7 new spots that were seen on my MRI, they believed 4-5 were actually tumors. That would bring the current tumor count to 13 in my brain, 8 of which have already received radiation. My hope was that we could do targeted radiation on the new ones, but Dr. Burt had some additional news. She said that before we moved forward, some additional testing was needed. There was a spot on my MRI that indicated I might have a disease called Leptomeningeal Carcinomatosis. This is essentially a rare complication of cancer where the cancer sp...