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Showing posts from June, 2019

MRI Results and Surgery

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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

Difficult Decisions

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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

For the battle is not yours...

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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?&qu

A Slight Complication...

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

June 11th Appointments

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Time for another update... So on Tuesday, June 11th I had my monthly visit to Huntsman. It was a rather busy day to say the least. We had to leave home at 4:30 am to be up to the hospital by 7:00 am so that I could begin drinking the contrast for my CT scan. My schedule was as follows: 8:00 am CT Scan 9:00 am Acupuncture 12:00 noon Labs 1:00 pm MRI 2:30 pm Visit with Radiation Oncologist Dr. Burt 3:00 pm Visit with Oncologist's PA We managed to squeeze brunch with my parents in there, but it was a pretty busy day. Unfortunately, we weren't able to spend much time with Dr. Burt. She'd been double booked and stopped in for just a couple of minutes. She briefly discussed my brain imaging, which is what we'd been looking forward to the most. We found out the the 8 tumors that had previously been radiated seem to be responding well to the radiation. That being said, she also indicated that there were possibly 7 new tumors, but that she hadn't had enough time t

Scandinavian Festival, a crazy Ratfink Reunion, and a neat live broadcast...

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As I've reflected on this trial with cancer over the last few weeks, I've finally come to the conclusion that I'm truly grateful for this trial. Has it been tough at times? Sure. All trials are. However, this trial has brought me closer to my Heavenly Father, my Savior Jesus Christ, my wife, my family, and many other individuals. I have become more aware of just how involved in our lives God truly is. I know that He is aware of us and that He is ready and willing to carry us through our struggles. My testimony of the Atonement has grown. I have been blessed with strength and peace beyond my comprehension as I have struggled through this. All in all, this trial has transformed my life and I'm grateful for it. That being said, there's another aspect of this trial that I am grateful for. It has provided me with a platform to bear my testimony, share the gospel, and connect with people. A few weeks ago, I posted about being asked to share my story on a FB page called