I Can’t Change My Situation, So I Changed My Mind

I quit chemotherapy 2 months ago. I had so much conviction and positivity that I wanted quality over quantity. I was going to live my best life, no matter what the time clock said. My biggest goal was to get back to driving and get the f*ck out of the wheelchair. I managed to do both! Go to hell, wheelchair, I’m back on the road!

Then 3 days ago, I caved.

I told Dr C, my infusion doctor, that I was quitting treatment. We talked about my decision and I (naively) thought that was the end of the discussion. I refused any further infusions, but I was going to keep up with the blood draws and scans but that was it. I was done. Later that month, I called to confirmed my appointment and they told me I’d be seeing Dr R, the head of the oncology department. On the following Thursday afternoon, while the nurse took my vitals, drew blood, and heparinized my port-a-cath, I waited very nervously for Dr R to come in. He’s a tall, thin man but takes up the entire room with a large, kind, and genuinely loving personality. I could tell he was a hugger, which put him right to the very top of the awesome doctor list. He started to ask me how I came to my decision to completely stop chemotherapy. He wanted to make sure I had discussed it with my family and that I had their complete support. He made sure I was having regular sessions with a therapist. Then I emphasized to him that at the time my bowel obstruction and resection, a 3″ x 4″ tumor was found on my omentum and the nodule in my lung had grown, both of which developed during my last cycle of chemo. I made sure he knew that this was it for me. Things were going in the wrong direction to the point that now an entire organ had to be removed so it wouldn’t metastasize even further. It wasn’t working and I was tired of having chemicals and poisons infused into my body that were making me sick and not doing much to stop the cancer progression. I decided to live my best life!

He started to give me my prognosis. He went into the “without treatment, you’re looking at about…” conversation. That one little piece of paper could have said 5 days or 5 years, but all of a sudden, I felt very alone and very small. My mouth went completely dry and my hands were cold and a bit clammy. I couldn’t stop fidgeting. The word terror doesn’t even come close to how I felt at that moment. It even looks too small on the screen for a statement that huge.

I stopped him. I had to. I didn’t want to know the rest of that sentence. I flat out refused to let him finish. I know its just an estimate and not set in stone, but I’m a bit too suggestible to risk knowing that daunting information. I had practiced in the mirror how to deal with most questions and statements that may have come up but when the time came, I was nowhere near my goal of being calm and collected. I was an emotional wreck and my fear felt super loud in that little exam room. I felt like a scared rabbit. I was ready to bolt out of the room. That sweet man knelt down and took my hands then, very calmly, offered a compromise; targeted therapy. He explained the treatment, how it works, and the side effects. I kept asking, “can I stop the treatment if I’m not comfortable for any reason??” I accepted, but very apprehensively.

I want to get as much out of my life as possible. I want to sit on the beach at night, draw pictures in the wet sand with a stick, and listen to the waves. I want to drive up the coast until I run out of gas. Most of all I want to have great sex and a lot of it! I was so certain I only wanted this life if it was as close to “normal” as it was before cancer. The lesson I’m learning, for the hundredth time, is theres no going back to that time before cancer. This ‘new normal’ is hard to figure out and harder to adjust to. It seems like every appointment, scan, treatment, medication, and even therapy session adds to that ‘new normal’, be it good or bad. I have a hard time seeing the good while sifting through this shit-storm of bad. I still fight against all the overwhelming info which isn’t very normal at all. I’m fighting to keep that part of myself that was me and isn’t anymore. It sucks. Badly. The hardest lessons take the longest to learn. (I defy you to find one ill person that likes the term ‘new normal’)

I promised myself that I would stick to my convictions. I reminded myself over and over again what I wanted my life to be, and a life of bone pain, nausea and vomiting were not in the chemo game plan. It took so much strength to admit to myself that chemo wasn’t working. I know if I chose to pursue them, I still have a lot of options, but I chose to stop all of them. After I made the decision, I took that breath that I didn’t know I was holding. I took my life back! I felt like I was in control of my life and ultimately, the end of my life. I was finding that part of me that has control of my own body.

I feel like I failed. I’m wondering if I let myself down. I’m scared and I’m not ready for what this is and whatever its becoming. I’ve had 3 years (2/12/16) of active treatment to figure this out and wrap my head around it, but I’m still in the phase of taking things in small bites. Every time I get one one bite down, another 3 bites pop up. I know I’ll never be out of treatment.

I know I’ll quit chemo again. I know I’ll go back to it out of fear again. Hopefully it goes better next time…