Just a Bump in the Road

On April 2nd, I had a session of radiation done on a tumor in my brain. The tumor sits just above my right ear on the edge of my brain. The treatment session was short and pretty simple and, for the most part, I was symptom free following the procedure. On Sunday, April 19th, I developed a slight headache. Normally, with radiation, it can take some time for the impact of the radiation to set in. Swelling can develop over time and there can be some slight side effects, like headaches, that set in. Naturally, I assumed this was just a headache that would pass. I struggled to sleep a little bit that night, mostly because the headache wouldn't subside, but I was able to get a decent amount of sleep. After dragging myself out of bed in the morning, I still had the headache AND I was fevered. I hit 99.7 on the thermometer and was struggling with chills. It wasn't terrible, but it certainly wasn't what I wanted to be dealing with! Eventually, Kim talked me into some pain meds an...

On Thursday, April 16th, I had a quick little jaunt up to Huntsman for an infusion. Unfortunately, due to visitor policy during the COVID-19 pandemic, Kim was unable to go with me. Well, she could have come with me, but she would have had to spend the entire time in the vehicle (or driving around filling her time) without me. I understand to an extent the safety precautions involved with a policy like this, but I struggle when it comes to this policy being in force for individuals admitted to the hospital, especially for surgeries. I remember when I came out of my brain surgery, I was terrified and the only person I wanted to see was Kim. None of the nurses were answering my questions, I didn't know if I was alright or what was going on...it was scary. And to know that individuals are being put in the same situation I was in WITHOUT any familial support around is challenging for me. It makes me wonder what considerations were taken into account when a policy like this was made. I u...

On Thursday, April 2nd, I had quite the day. I had two infusions scheduled along with targeted radiation for my brain. On top of that, all visitors were prohibited from entering the hospital, which meant I was tackling it alone! Kim was working that day, so I was planning on heading up by myself anyway, and fortunately the symptoms of these infusions and radiation sessions don't come until the following day, so I felt pretty okay with the plan. That being said, I had to leave WAY early and I'm not a fan of that! haha I absolutely love watching the snow fall, but driving in it isn't my favorite. Fortunately, the roads weren't TOO bad, especially once I got through Nephi canyon. And with the COVID-19 shutdowns, the roads are pretty bare, which makes an early morning commute in the snow much less stressful! Anyway, I made it early and was ready for the day ahead of me. For some reason, though, this ended up being kind of a weird day... I was taken back for my inf...

On March 18th and 19th, I had two busy days up north with Kim! My brain MRI on February 20th showed growth in four tumors and the decision had been made to move forward with targeted radiation on those spots. Fortunately, as I shared in another post, we received insurance approval for those tumors. The 18th was a day dedicated to preparation for that radiation. I started with an appointment with Dr. Burt, my radiation oncologist and it was a fairly straight forward appointment since we've done this before. We didn't have too many questions, other than about the cause of the growth. I asked if it was just swelling in the process of dying and she said that was very unlikely, which wasn't necessarily the best response, but it is what it is! After that appointment, I went to radiation prep. This is where they make the mask that holds my head in place. Here are some pictures from that session... These are the pieces that are used. They are then soaked in hot wat...

One of my favorite parts about this journey with cancer was sitting at our booth for the events and handing out wristbands. I absolutely loved visiting with people and hearing their stories. It was definitely one of the highlights. I'm grateful that Kim allowed me to buy the wristbands and dedicate so much time to sitting around and socializing. There was a lot of laughing, crying, and bonding. I'm grateful for all of the support that we were shown during that time and for the continued support we have received. I'm also grateful for the relationships that persist. Not too long ago, Kim received a message on Facebook from someone we didn't really know. He introduced himself and notified us that the wristband his daughter had worn for almost a year had broken. She was devastated and he asked if he could buy another one from us. While driving home from up north one day, we dropped off a bag full of them. I don't remember this girl, but it touched my heart to know ...

Some of you might remember what happened during the Summer... New brain tumors had grown and we tried to get approval for targeted radiation on the new tumors. Unfortunately, because the tumors in my body were out of control, I was declined radiation. This was also about the same time I was told I might have Leptomeningeal disease. In other words, it was a challenging summer. My scan on 2/20 indicated possible disease progression that merited targeted radiation, IF we could get the approval. Fortunately, the approval came! I have an appointment with my radiation oncologist on March 18th, followed by a treatment planning session (where they fit that dreaded mask!), and then an MRI in prep for radiation. We will see how those go! The following day, March 19th, I'll have body CT scans along with another infusion. It will be a couple of busy days, but hopefully everything goes well! This is what the first mask did to my head... And it felt a lot worse than it looks!

On Thursday, February 20th, I headed up north with Kim and Josie in tail. Jo had an MRI of her hip scheduled (She will likely need surgery on her hip come summer time...) and she was tagging along for the day. My last MRI, which was in December, showed that I had lost more tumors, which was excellent news! With five tumors still in my brain, we decided to guess how many would show up this time. We'd had a string of great MRI's and were hopeful this one would be too! Well, after the MRI, I sat down with my MA, Carolyn, to go over the news. When news has been good, she's come in with a big smile on her face. Unfortunately, this time, that wasn't the case. In fact, she expressed some serious concern for what she'd seen. Based on her preliminary viewing of the MRI, it appeared to her that, despite two more tumors disappearing, the other 3 had grown and there was potentially a new tumor. Her opinion was that this was indicative of disease progression, which meant that ...