Alicia's Story-Cancer

This is a response that I wrote to a book that I read in January. I have decided to share my thoughts with you.

During the first three years that I was sick, I sometimes wished that I had cancer. No doctor could give me a definite answer as to what was wrong with me, as to what had stolen the life I knew from me. Each time I anticipated meeting a new doctor, usually a new specialist, my optimism and my hope would increase. One of these Stanford or Harvard educated doctors must be capable of solving my case. That thought is what all of my friends would tell me. I was blessed. I lived four miles from Stanford University Medical Center. Stanford would diagnose me and cure me. No one could fathom the idea that what was wrong with me was too difficult for the Stanford doctors to figure out or that Stanford did not specialize in ambiguous mutisystem illnesses.
I wished that I had cancer because then something would be forced to happen. Either I would fight the cancer, and survive or I would die. In that scenario, I never wanted to die. I always assumed that I would fight like hell and beat cancer. After the cancer would have been gone, I would have been able to go back to my life. I would have been cured. My energy would have returned. My parent’s friends would respect that I had something wrong with me. Everyone knows the name Caner. They know that it is serious. I know that some people questioned whether or not I was truly sick. To them I looked like a normal twenty something woman. Knowing that someone doubted my illness felt like a personal attack on my character. If they truly knew me, they would know how much I was suffering and how enthusiastic I am about life. There isn’t any part of me that sort of enjoys lying on the couch in front of the TV. I have had to adapt and accept that it is part of my life. Yes, there are TV shows that I now enjoy, but I would rather be out contributing to the community, working to help support my family, taking classes, talking to my friends, and most of all working on a project that will help others. I would also love to exercise again. People complain about having to get up early and go to the gym. I would give so much to be able to get up and swim a master’s workout in the morning. I miss the way it feels to physically push myself beyond my comfort zone.

I should talk more about why I mentioned the idea of cancer. I realize now that my desire to be diagnosed with cancer and then beat it was naïve and ridiculous. I didn’t know that much about the suffering and fear of death that cancer patients endure. I was just so frustrated with my own situation and my own suffering that I wanted it to have a name that would validate my experience in other people’s eyes. If I had cancer, then people would actually understand that I was sick.

After reading, Alicia’s Story, the story of a twenty-three year old woman battling metasatic cancer, I feel guilty for wishing that I had cancer. She is facing the very real possibility that she will die. I have a hard time understanding how some people can have diseases more serious than Lyme disease, like diabetes, and yet they have energy to live their lives and I am robbed of my energy and therefore I am robbed of large parts of my life. In eight years, I have not been able to finish college or to have a job. I recently married a wonderful man. I am scared that I will not have the energy to care for the baby that we want to have. I do find comfort in knowing that it is possible for me to live a long life. I might be physically miserable but I will still be here fighting. Hopefully, I will improve dramatically with antibiotic and antiparasitic treatment and I will no longer feel miserable. It angers me that my ability to help others and to help my family has been taken away from me. I refuse to believe that I will not improve. I have to get better. I will get better. I have too much to offer this world to not get better.
While reading Alicia’s book, I also realized that she and I have shared many of the same medical experiences even though she has cancer and I have Lyme disease. I could relate to the multiple MRI’s, PET scans, CT scans, and x-rays. She and I both had some of them with IVs in us for contrast die and some of them without. It is so confining inside those machines. I think that I developed claustrophobia since I started having to go into tiny spaces, such as the MRI machines. The hard part of the tests is that the experience of being inside the machine by ourselves produces the feeling of loneliness and anxiety. The aloneness comes from the fear of what the radiologist might find as he/she reads the results. It feels to me more like isolation than it does like anxiety because I am in there all alone, lying completely still, waiting. Will it be good news or terrible news? Will my life change as soon as they roll me out of this machine? Also, there is a strange element of how routinely the procedures are carried out by the medical staff. I understand that the technicians carry out their daily work duties but, for us, it is the quiet moment before our life might change.

I need to go rest now. I hope that some of you can relate to some of the emotions that I have experienced. I think that they are universal for people experiencing serious illnesses.