The Hole Within

CHAPTER 55

My symptoms continued to worsen. I had lost a lot of weight that I could not afford to lose. One night we pulled the bed out of the pull-out couch so we could lie by the fire. It was winter so it was cold enough. We were going to make love and Mel slowly undressed me by firelight, kissing and caressing as she went. I lay there nude, feeling the heat from the fire warm me outside and the heat from my desire warm me from within. Mel crooked her elbow and lay with her chin in her hand. She looked at my body as her hand ran over it. I lay with my eyes closed, enjoying the sensation of her hands on my body when she stopped and laid back. I opened my eyes to see what was wrong and Mel was wiping away her tears. I asked her what was wrong. "You're all bones," she said softly. "Touching you is like touching a skeleton," she cried. I did not know how to respond. I knew I was too thin but I just could not keep weight on no matter how much I ate. "I'm sorry" I said, my standard response. "Lys, we need to find out what is wrong with you. I'm afraid that I'm losing you," and Mel began to cry in earnest. I held her to me and as she cried and tried to soothe her. I was not sure what to say. I knew this was affecting her as much as it was affecting me. I told her that I had a follow-up that next week.

Dr. Tuber was perplexed. The cavity had grown. He said it was imperative to find out what was causing it. He scheduled another bronchoscopy. I had it done with no problem. I was barely conscious of the clipping and the washings in my lung. Dr. Tuber took more samples this time. Now we would have to wait for the results. Three days later, Dr. Tuber's office called me and said I needed to come in to talk to him. I called Mel and she took the afternoon off to take me. The doctor told us that it was finally confirmed that I had Valley Fever. The fungus was eating a hole in my lung and we needed to treat it right away. He wanted to try the least aggressive option first, antifungal pills. A month went by and the scan showed it had gotten even bigger. He went to a higher dose and a more aggressive antifungal. Same results. He told us that the next step was a big one. I would have to go through chemotherapy. The drug was a nasty drug called Amphotericin B, better known as Ampho-terrible. His nurse got me set up with home health. They would come in and administer the drug every other day. Since the treatment was going to last several months the nurse said I would have to have a PICC line inserted into my arm. It is a long IV that is threaded into the brachial artery. A harsh drug like Amphotericin would eat up my veins and a normal IV would have to be changed every three days.

Mel and I were both hopeful and afraid. At least now we had a name for the disease and it was going to be treated. Chemotherapy scared us both and Mel did not want me to lose my long hair. Mel had a thing for long hair. We waited for my first dose with apprehension. The nurse came in and started the PICC line. Having an IV inserted up your arm is very uncomfortable. When she was done, she hung the bag of medicine. It was covered with a foil cover to protect it from the light. It would run over two and a half hours. I laid down on the couch and watched as the nurse hooked me up. I was anxious. I had no idea what to expect. My doctor had given me Percocet to take an hour before my infusion to help with the horrible headaches the medication caused. I tried to relax as the nurse settled into a chair. I was mindlessly watching the television when the pain started. It came up the back of my neck and wrapped itself around the top of my head. It was enormous. It felt like a vise with squeezing my head. I told the nurse and she commented that it was to be expected. She asked if I wanted the IV Demerol the doctor had prescribed. I just wanted the pain to stop. It was it making me nauseous. She gave me the Demerol and showed me how to administer it to myself in case I needed some later in the day. The Demerol should have given me a rush similar to heroin. But it was like the pain soaked it all up. I did not feel high at all. My head felt funny, like it was stuffed with wool. The Demerol made me extremely nauseous and I had to throw up. I did not like the feeling. The nurse gave me an antiemetic, for nausea, that was prescribed to me. It did little to touch the extreme nausea. I was two hours into the infusion when I started with the chills. My body begin to ache and I could not get warm enough. I was so uncomfortable. I kept moving, repositioning, trying to find a comfortable spot. I was miserable. The infusion ended and after a final set of vitals the nurse left. I tried to sleep. I had to keep getting up to vomit although they were dry heaves by now. I laid back down, teeth chattering, and covered up to ward off the deep chill inside. Finally, I fell into a fitful sleep.

I suffered through the day. I was not able to eat because of the nausea. I woke up early in the morning hour and I was ravished. I went downstairs and found a package of Oreos. I poured some milk and took it all back to our bedroom. I sat on the floor next to the bed and begin to eat. By the time I was satisfied I had eaten half of the package of cookies. I climbed back into bed and slept. This became my nightly ritual. We always had to have a new package of Oreos on hand and a bag of potato chips. I would eat one or the other depending on what I was craving. Despite the massive intake of calories, I could not keep weight on. I had gone from denying myself food to be thin to struggling to live and keep weight on.