Invincible, Right…?

Growing up I had always thought I was invincible. Invincible in the sense I could never be knocked down from life, or that I would not stay down or hurt from whatever it threw at me. I had grown up from my past, the basics, being bullied throughout my time of going to school, gained friends and lost friends, been “in love”, gotten my heart-broken, you know, the things everyone goes through. I got through the pain that my father had put me through when I was young, I got through fighting cancer, mental illnesses, suicide attempts and self harm. (I’m two years clean by the way!). With everything I had gone through though, I thought I was unstoppable. 

It was time for my monthly follow-up scans and doctors appointments. I had decided that for the first time in almost 5 years I could go to my appointments by myself and I could go and get the results from my MRI too. Almost 5 years, no biggie right? Should be like any other scan results, clear as usual. But I had never been so wrong in my life. It was May 2018 like normal, I had scanxiety. I went to my doctor’s appointment, my best friend had also offered to come in with me. But I figured it would be fine and I got this. Waiting in the waiting area of the doctor’s office was nerve-wracking. 15 minutes later I’m sitting in a patient room and my doctor comes in and breaks the news. “We found some things on your scan”. He told me there were three small growths on my stomach lining. Great.

I remember keeping myself together, walking out of the doctor’s office, it was a little difficult to find the elevators to find my way back down to the parking garage. The world was spinning, I was light-headed and I thought I was going to pass out. One floor down, and all the way across the hall till I made it to the parking lot. I started panicking by the time I got to the parking garage. I couldn’t find my friend’s car, I remember calling him barely getting the words out of my mouth trying to not burst into tears, “I don’t remember where you parked, I can’t breath, can you come find me”. Has anyone else ever experienced those times when it feels like the world is going to implode because everything is going wrong in every possible way? And you can’t hold it in any longer? That was one of those moments for me. That was the first time in 5 years I had actually cried about my cancer. It was ugly crying too, sobbing, hanabata (boogers) going down my face and all. I hit rock bottom, again.

When I got the news I honestly did not want to try at anything anymore. I was working a decent job, running a small online business on the side and about to apply for a second job so I could work full-time and part-time to move out of the house. I was ready to quit my job and stay in bed all day and just sulk. I felt like my life just went backward a few chapters. While my cancer is slow growing, there are no known effective treatments for it.

The next steps were to get  another MRI, CAT scan, an endoscopy and finally, get referred to a surgeon. I had a long discussion with the surgeon and in the end she would not take me and she recommended against surgery because she did not want to remove such a large part of my stomach at such a young age. 

Since that did not go how my oncologist planned, the next step was contacting the NIH again, to see what suggestions they had for treatments for me. They had two, a pill I can take every day that treats GISTs SIMILAR to mine, but the treatments aren’t very effective or there was a clinical trial open at the NIH. If you’re like me, even though you are very independent (and of age that all medical decisions are your choice, what mom says, goes. My mom picked the treatment on the mainland, and honestly it was not very appealing to me (I only wanted to go to travel at first honestly) because I would have to travel almost 10,000 miles there and back home each time. There were requirements to qualify for this study, so I had to go through the regular routine again, more MRIs and blood work, etc. My tumors were barely big enough to qualify for this trial, but they made it(yay?). After being re-diagnosed everything went by so fast and slow. I slowly decreased my hours at my job and new job. I got ready for my trip up to the mainland with many doctors appointments.

By October I was flying up for my first round of treatments. I learned that I hate having multiple 5 and a half hour flights in a row. It’s torture because I do not like sitting around for more than maybe 30 minutes at a time. I was up there for a little over two weeks, gradually decreasing with each time I went up till we got it down to 6 days of being there. It was really the different the care and attention you get from the facility up there. My research nurse at the time had described the NIH as Not-In-Hurry and she was right, they aren’t in any rush to get things done, everything is done on their own time. Even if you have a printed schedule it almost never goes according to plan. Don’t get me wrong it is an amazing and probably one of the best places to go for treatments, I just really do not enjoy sitting around not doing anything. 

Right now I am about to go up for my 7th round of treatments and even though I have this traveling thing down the t, I am not ready. I don’t mean to complain but I DO NOT like wearing my mask for 12 hours straight, I don’t like the fact that I need to constantly wipe down everything around me and I don’t like being surrounded by so many people who do not know how to cover their mouths when they cough or sneeze. From the moment I get dropped off at the airport till the second I make it to the hotel I have to be as careful as possible. For the first 5 months of treatments I had gotten sick every time without fail. I had everything from a regular cold to viruses to pneumonia all the way to the swine flu. I have had two hospital stays and put on respiratory isolation every month. Respiratory isolation is when you are isolated from everyone else and you need to wear a mask, sometimes you have your own separate room and sometimes you just put farther away from other people. Other people who come into contact with you need to wear gloves and masks. It gets quite lonely sometimes.

Going to treatments takes huge toll on my physical and mental health. I cry a little more often than usual and I’m indoors more often than I’d like to be. At one point I didn’t want to even exist anymore. I tried hiking the other month, I ended up sleeping for 14 hours after that. I haven’t worked in about three months because of how much I was getting sick from being around people. Going on planes every 3 weeks doesn’t go well with my anxiety, especially with whats happening with all the planes recently. Treatments itself are no fun. All I really do know is I’m taking all one day at a time!

I’m going to stop here for now, I just wanted to share part of my story of having cancer again and the experiences I am going through. Thanks for reading!