I was asked to write a letter about my journey with cancer. If has been a long one, that’s for sure. May of 2012, I was having pain on and off in my left jaw still after being seen while in the hospital for a kidney infection and being told it was a plugged salivary gland. Sometimes it hurt so bad that I would just cry and one evening I asked my fiancé to call my mom at 12:30 am b/c it hurt so bad. I had gotten pain meds and they helped a little bit, but not enough. I had started a new job in which I had insurance. I decided it was time to go to the doctor and get this figured out. I saw my regular doctor Diane Kenkel who sent me in for an ultrasound of my neck. They could see a mass in there but couldn’t really tell what it was. She wanted to refer me to an ENT. I refused to go back to Graham and that’s when I meet Dr. Peter Kasznica, whom I would become very familiar with. We had an exam, CT Scan, and it was decided that this mass must be pushing on some sort of nerve and needed to be taken out. July 31, 2012. I don’t really remember much from the morning of surgery, I know I ate ½ of a sausage link and got in trouble and had to wait an extra hour for surgery! My mom and Rubin came with me and I just ignored Dr. K and just told him to tell them what he was going to be doing. I remember him saying that there was a VERY VERY slim chance that this could be cancerous. Once he said that I really got nervous and just wanted to it to be over. I played games on my phone while he prepped them as to what he was doing just to keep my mind off it. I came out of surgery and remember asking for my mom. Shortly after she informed me that when they went in they took a small piece to biopsy and it indeed came back cancerous. This is when Adenoid Cystic Carcinoma and I would become “friends.” They then proceeded to take out as much as they could and that I was very lucky to be able to still have function of my tongue as it was very close. I was discharged from the hospital but had a drain in my neck so had to stay in Brandon with my aunt just to make sure everything was ok and to get the drain out the next day. I got my drain out, went home to recover, and met with the doctor a few weeks later. He sent me on to the radiation oncologist, James Simon. He came up with a plan with him and his team that I would do 6 ½ weeks of radiation 32 treatments. When I asked about chemo he said that with the rarity of this great cancer that had been growing in my body, there just isn’t enough information about it to know if the chemo would do any good. Since I still had to maintain 30 hours at work during this time it was just best to go with the radiation. Less side effects, no hair loss, hopefully continue to work through the whole process. Everything is a little blurry as to what the next few weeks looked like, a lot of stressing, a lot of planning on who was going to be driving me, how I was going to continue working. I had a 2 ½ year old at home and how on earth was I going to care for him when I didn’t know if I Was going to be able to care for myself.
September 12, I had my first radiation treatment. This god-awful mask that I had to be latched down to the table with was going to be my friend for 30 mins, 5 days a week, for 6 ½ weeks. I saw Dr. Simon once a week before my radiation to make sure I was doing okay and handling everything. It was starting to not go well. I was getting sick in the mornings, throwing up, couldn’t eat or drink anything, and eventually lost my hair in two different spots. It was rough, I literally went to work at 6:45, rode with someone to radiation in the afternoon, came home and went straight to bed. I did try and eat a few times and it just hurt so bad that I cried. Coffee, that was my savior, I drank it all day long, it was the only thing that tasted good to me. Not even water. I eventually had to switch positions at my job, I was working at Aurora Plains Academy with the troubled youth and I couldn’t help my kids in the way they needed. I went to work in the kitchen with about 3 weeks of radiation left. I could take a break when I needed to whether it was to puke, or because I was too tired to stand. They were very understanding. I had my last treatment on October 23. This rough part of my life was over, for now.
My sister had been working night and day while continuing to run her salon and drive me to radiation once a week, to put together a benefit to help pay for medical costs. She raised over $16,000 to help pay for my bills that I had incurred. I had a PET scan in December of 2012, and it came back clean. I was so excited and ready for many, many, many more of them. Which they continued to do for just over 4 years.
In January of 2016 I was down to annual scans. I had given birth to another little boy in December 2014. I went in for my annual scan not thinking anything different. By this time, I was so used to them that I just went by myself and didn’t take anyone else along. When I got the results, it wasn’t good. The ACC had metastasized into my lungs. I had 6 different spots that showed up on my PET Scan. I was told 4 years prior that when it comes back in your lungs there was no treatment. Well by the time it actually did. Dr. Solomon my new oncologist and Dr. Simon came up with a radiation plan to just go after the two biggest masses. I talked with Rubin and Dr. Solomon and we decided I should to go up to Mayo to see if they had any better options for me. Dr. Solomon did his residency with and is friends with the doctor that I was getting set up to see. We traveled up there stayed for 3 days. They didn’t really have any better option for me, so I decided to go with the radiation. We made an appointment on the way home from Mayo and then went in and made my molds the next day. Radiation was going to start again. This time only 2 ½ weeks, 10 treatments. I was determined to do this on my own this time. Side effects weren’t going to be as bad. The first day I went in was the hardest, I had to hold on to these bars above my head and hold very still as this was a new radiation that was very precise down to millimeters. I panicked, freaked out, cried uncontrollably, and couldn’t hang onto those bars like I needed to. From then on, I had them tape my hands to the bars and it went a heck of a lot better. I handled those treatments very well, no side effects at all. It was good, well as good as it could be for having to go through radiation treatments again.
I ended up quitting doing daycare because I couldn’t ask my families to count on me when I couldn’t guarantee that my health was going to let me care for their kids 100%. They ended up getting the two that they were going for, but I did have some very significant scaring in my lungs. At this point we were hesitant on going after the rest of them. So, Dr. Solomon decided to wait on them and just keep an eye on them. Since then, I have done 3-month, 6-month, and was down to yearly scans only to have a couple scares and return to doing them every 6 months.
June 2018, I had had a few more spots show up in my lungs but still just watching them as they are growing slowly. There was a mass on my left upper lobe of my kidney. Here we go again, from what I know about my cancer when it metastasizes, it will go to your lungs or your liver. If you know me well you know I always have to be the strange one, so why not my cancer follow suit. I saw an urologist in Mitchell then went up to Pierre for our annual fishing trip and started to pick “Dr. Dave’s” brain. He is a urologist in Sioux Falls. I asked him what his thoughts were on how to treat it. He referred me to a colleague of his, Michael Gillett. I met with him on my 32nd birthday and scheduled surgery for October 17th to cryo-ablate this bad boy. I had a follow-up scan January 21st and everything from the kidney stand point looks good. As long as it stays the same size or shrinks it will be okay. February 5th I went in and had my lung scan. Met with Dr. Ben in the afternoon and found out one of my lung nodules has grown quite a bit. He and his team met to discuss my case at their weekly lung conference. They decided that I should probably radiate not only the one but two of my lung nodules. I met with Kyle Arenson my new radiation oncologist on March 8th. We went over a lot of detail about what to do. We came up with a plan to only go after the biggest lung nodule but it’s going to be difficult he tells us. It is really close to my heart and he is a little concerned about blowing an aneurism, and in his words “You obviously don’t come back from that.” This makes me a little nervous but I trust he knows best. I will have an MRI to make sure that it has not spread to my bones as I have been having some pain and they just want to double check everything before we do any mapping. If it has spread we will be making a different plan as far as radiation goes. I go in on Friday the 22nd to get that done. Then we will get the next round of radiation going.