One step forward and three steps back. 

That’s how my cancer treatment has been this whole time. I’ll get good news and think, “Oh, maybe THIS will be the beginning of the cancer free journey!” But a couple of weeks go by and then something will happen like another brain bleed, or more tumors will pop up. 

I finally thought back in March that this was it! I was actually going to have a fun summer that included the pool, lake days, friends, family, and maybe a trip or two between treatments. I had my first clear scan since starting Keytruda in October. I felt great and everything was going to plan. The only thing I was fighting was side effects from steroids, but the doctors and I had a plan to combat those. And then, fast forward to May.

 Out of nowhere, I started having severe autoimmune-like problems. Hours of research and multiple doctors appointments later, I found out that treatment was causing these problems and treatment had to be stopped. And along with the autoimmune problems, new scans showed 3 large brain tumors had grown just since March. One step forward and 3 steps back. Meeting with the oncologist and radiation oncologist, plans were made over the next several weeks. We would try a new chemo and do more radiation to the tumors. Well, my brain had different plans. 

While waiting for chemo to be approved by insurance and the day before radiation, I had my second hemorrhagic stroke. This bleed was sneaky, though– undetected at first– and bled through the night. I didn’t notice until I woke up the next morning. The bleed was from the temporal tumors. I spent the next few days in the ICU being monitored, closely watching the bleed. It had stopped, but the bleed covered the tumor so we couldn’t get radiation done to the temporal tumors until the bleed was absorbed. The frontal tumor behind my eye, however, could still get radiated. So the radiation oncologist decided we would radiate the frontal tumor and wait for the temporal tumors for about 4 weeks. 

Surprise! My brain again had another plan. 

Two days after I got discharged from the ICU, I had my first seizure. Back to the hospital I went. Luckily nothing changed from the bleed, but the swelling had caused the seizure. More seizure medicine was added and I was discharged again. Another three steps back. I finally got radiation to the frontal tumor. Three weeks went by and I had just been waiting for the MRI to see if the bleed had been absorbed so we could see the tumor again to have radiation. Everything was going well. I was at home doing my own thing watching tv, trying to enjoy the summer. Mom had been working as much as she could because I had been pretty boring and felt fine. She didn’t want to leave me alone on one particular day, but I told her I was fine and if anything happened I would text and call 911. How wild is it to think that possibly calling 911 would become part of my daily thought process? 

I slept most of the day because I was just super fatigued. I got up and made myself some lunch and sat down to watch some tv and suddenly I felt my tongue start to twitch. I knew it was a start to a seizure. The very first one I ever had started the same way and I knew I only had a couple of minutes before my whole face started to seize, so I texted Mom “Seizure, Can’t Talk,” Every time I have a seizure, it takes away my ability to talk. The seizure moved from my tongue to my lips, to my cheek, to my eye, and then my whole face. I called 911 even though I couldn’t speak, but they have a protocol for yes and no questions and a button push for “yes.” It’s well thought out and really easy to navigate and understand. Luckily the ambulance came and by the time they got to my house my seizure had stopped. My speech was somewhat back, but I still wanted to be checked out. 

At the hospital I got a CT and it showed a significant amount of swelling and a midline shift in my brain, which means the middle of my brain had moved to the other side which is not good. So, that automatically got me a first-class ride to Hotel Vanderbilt (My Second Home). When I got to Vandy I met with the neurology and oncology team. They confirmed that the swelling had increased and caused a midline shift and steroids had to be increased. I figured that pretty standard and was all that had to be done. But everything changed when the neurosurgeon walked in. I’ve met him many times but I’ve never needed him. He always just checked on me and told me surgery was not necessary at the time. This time was different, though. We were not met with a strong, perky smile, but a fierce, concerned look. I knew when I saw his face it was not good. 

“Taylor, this time you need me. Surgery is the only option,” he said. The tumor had grown three times the size and was capsulated meaning that it was filled with fluid and couldn’t be radiated. I asked if there was any other option like chemo. He said no and if we didn’t do surgery it would probably be only 4-5 weeks that I would have a massive stroke or seizure and pass away. So brain surgery was the only option. The only thing that was going through my head was…What. The. Hell. It had been almost two years since I had been diagnosed with one of the rarest cancers in the world. I had been through open heart surgery, the toughest chemo regimen you can have, 2 strokes, 2 seizures, 8 brain bleeds, 31 brain tumors, so many radiation treatments that I lost count, and now brain surgery. 

When the surgeon left the room I looked at Mom with tears running down my face and asked, “What have I done in my life to deserve this type of hell on earth?” 

Five days later I had brain surgery to take out the tumors. The surgery took 7 hours and went extremely well. I came out talking and smiling better than going in. First thing I said was, “I guess Gods not done with me yet.” I did really well which I’m so thankful for, but I would be even more thankful if I didn’t have to have surgery in the first place. The week before this all happened, I had a doctor have a really tough conversation with me. She explained that after seeing me and examining my body and reading my chart and notes that I need to start thinking about end of life care and my status. What she meant by status was if my heart should stop or go unresponsive, would I want the medical staff to do CPR or intubate me to help me breathe?  In her medical opinion, she said, she would not recommend for me to be a full code any more, that she would recommend me being a DNR (Do NOT Resuscitate) and DNI (Do NOT Intubate) because she thinks my body will not survive being put through the code process if my heart stopped. 

My great summer had turned into hard conversations, failed treatments, life saving surgeries, and the reality that I don’t know how long I have. These are the conversations that my friends and family don’t know I have to have. They see that I’m doing pretty well on the outside, but I’m having to have conversations with my doctors and Mom and Dad about if my heart stops, do I want CPR or not and how long to keep me on life support before taking me off. I’ve had to draw up a living will and durable power of attorney at 27 because I have a higher percentage of dying in the next couple of years than living. These conversations are needed, have to be had, even though I don’t want to have them. 

Three weeks ago was the first time a doctor told me I was not strong enough to not beat something. I heard it two times since then by two different doctors. Three different doctors discussed death with me in a three week period. Every time it made my heart drop. It made me realize that I probably don’t have as much time as I think I have, but I try not to think about that part. I try to think about the time I’ve had and the days I still have. The time before cancer that I’ve loved, but also the time during cancer that I fought like heck and put up a fight and am still fighting. I also look around when I get out and see people enjoying life. It makes me happy, sad, mad, and jealous all at the same time. Mom and I talk about it all the time because we see people take time with family and friends for granted every day. They would rather ignore reality, care more about material things and what people think of them. 

I say this a lot in my writing, but people don’t realize what they are missing. A cancer diagnosis makes you realize it a little bit, but when you have multiple conversations about death and have a doctor say if you don’t have surgery you’ll be dead in a matter of weeks, it makes it sink in a little more. These past couple of weeks the question has been, “What have I done to deserve all this?” As hard as it’s been to pray, I just keep on praying that God gives me the strength to keep on going and the knowledge for my doctors to keep coming up with treatment. So far my prayers have been answered. We are slowly stepping forward.