THE NOVEL AGENTS

Doesn’t that sound so much better than chemotherapy? These novel agents, unique agents are second-generation treatments that are not as difficult on the body or the soul. The first round was by mouth. I took a new drug called Revlimid. It is a revised Thalidimid. Thal has been successful for many people, but the side effects take a toll on the quality of life. It’s not just about living any more, quality of life is on the table too. Scientists were able to isolate the molecule(s) that caused the side effects-the worst being peripheral neuropathy. This deadening in the hands and the feet doesn’t go away when you stop taking the medication. So Revlimid is the new wonder drug. Again, I bless my insurance and wish that all Americans had it. Rev costs $30,000 a month, but with my plan. I paid only my copay $15. After two months on it, my numbers started to go up so my doc changed my med to Velcade. Since he was getting me ready for transplant, he wanted to get those numbers down ASAP. I was still left with a full bottle of Rev. I keep it in the pill cabinet. When Dr. Comenzo asked if I had some left because we might use it in conjunction with another drug, I joked and told him I sold it on eBay. I also have saline and hepbrin syringes, neupurgen shots to stimulate stem cell growth and no place to donate them. Three months of Velcade got the numbers to the place they needed to be for tranplant Six months of treatment, of novel agents attacking those cancerous IGG weeding them out until I was almost good as new. For me, it was on to dexemethsone that evil steroid that makes you ravenous and sends you into a tizzy. It is however a pretty effective cancer killer that offers a short remission but can be fine for patients getting ready for transplant. I was to complete three pulses in the month of June. That’s four days on-four days off times three. The first day I took the dex, my energy was boundless. Manhattan is a great place to live if you don’t sleep at night. I went out to buy birthday cards after midnight, paid all my bills, reorganized my closet and so on. I didn’t sleep much the four days I took the dex. As far as I was concerned this wasn’t a mood swing, it was a blessing. On the sixth day when I was off the dex, my adrenal system crashed. I was so tired, but I couldn’t sleep for long periods. I couldn’t get out of bed. I called in sick. I was so depressed. All the investigating I had been doing to understand my cancer and my treatment seemed so pointless since everything was so incredibly hopeless. I didn’t even want to try to feel better. I was convinced it would be impossible. I called my psychiatrist and shared my concerns. He gave me a number of things to help me sleep. He demanded a full eight hours. I haven’s slept four eight hours since menopause started. Armed with sleeping pills and an antidepressant, I tried the second week of dex. I couldn’t leave my apartment. I couldn’t sleep, but I was too tired to get out of bed. Denise and the department picked up the slack, marking my projects and dealing with yearend minutiae. Denise told me to get my ass into work. She said I could plant it behind my desk in the English office and close the door. She was right; it would help to be in the office. I didn’t want to see the faces of the friends and colleagues who already saw me dead. Sympathy is pretty tricky for me. It didn’t get much better so I called Dr. Comenzo and asked if I could try something else. I was worried he wouldn’t like me because I wasn’t brave, but he didn’t seem to mind. He was agreeable. He put me on a new drug, which had just been approved for Myeloma called Revlimid. I had to take a little dex with it. He modified the standard dosage to consider my reaction to dex. He agreed that I should go back to work in a day or two when the dex would be at bay. Denise was right. Sitting at my desk, students at home studying for the regents, and those who had been worried I’d die soon were too afraid to stop by and say hello. All my lovelies and Gabe indulged me-sort of an extended chemo party (more later). From the Revlimid, I regained my sanity, but developed a full body, itchy, itchy rash. I needed a shot of procrit because my red blood count had dropped. Yikes! Dr Comenzo reduced the dose of revlimid and I got my shot. When school ended, my daughter, Julie visited me. We were taking a road trip up to a friend’s bed and breakfast. Julie had volunteered to help me pack for my trip to Italy with Lewis. Dr. Comenzo assured me that there was no reason to sacrifice any fun for MM. My kind of guy. I was excited about all these prospects, but I was a nervous wreck. With a compromised immune system, I was supposed to be germ conscious. I have always held on to the banisters, the poles in the subway. I probably even touch my face while I’m on the subway with the hand that holds the pole. I must add that I’m a daydreaming and as a result (maybe) I am clumsy. I leave the walking to my feet and sometimes it’s not pretty. This all leads to a little fieldtrip that Lewis and I took downtown. He is a wonderful planner. He bought me a daytrip book and asked where I’d like to go. I said we should start on the Staten Island ferry and then visit some sites in the Wall Street area. We took the subway downtown. Lewis would have preferred to drive, he deferred to me-this was one of the only times we took the subway in the two years we were together. Walking up the steps at Whitehall Street, I decided to avoid germs and not hold the banister. A big mistake. I fell and used my wrist to block my fall. It couldn’t possibly be broken, I thought. It hurt like hell, but all I needed was a little ice. We came out of the subway and I said all I needed was an I Love NY tee shirt to make a sling and a little ice and I was ready for the ferry. I can be the cockeyed optimist. We spent the next six hours on our little field trip. My wrist was throbbing in a numb sort of way. When I finally sat down on the couch in my apartment at 6 PM, I announced that I thought we should go to the emergency room. I left my car keys with Josh so he could pick up his sister and Lewis and I took off for St Luke’s. This was the evening of the break at St. Luke’s and the wait for an xray was more than two hours. We crowded in to sit with people whose wrists were crooked, whose legs were mangled, fingers maimed. We all got ice and waited. We traded stories. One guy’s middle finger was broken. He had somehow stapled his finger with an electric carpet stapler. Another young man was teaching Irish step dancing and in his demonstration he went down on his wrist so hard he couldn’t straighten his hand. Two lovely lasses had escorted him to the ER. It was obvious his charismatic charm drew them to him. This was almost fun. When the doctor was ready to see me, he had to wrestle my grandmother’s engagement ring off my finger because of the swelling. I was thankful that he didn’t have to cut it off, but it hurt so much and I knew it was only a prequel. he told me he had to pop my bones back in place. He showed me my x-ray. He turned to the resident and told her to make the adjustment. I’m all in favor of education, but this was my wrist. The diminutive resident smile nervously at me and grasped my wrist. I let out a bone-chilling scream. When she stopped, the doc rexrayed it and said it wasn’t quite right, he’d have to do it again. I requested drugs. When the nurse came in with a giant needle and said she had to inject it into my muscle, I decided to just scream again. And I did. The doctor was satisfied. Since it was close to 3AM and the crowd had thinned out he told me about my fracture. It was called a Coleus fracture named after an Irish surgeon who identified the break without the benefit of an x-ray machine. Farm animals. Who knew farm animals had wrists.The doctors told me that my Irish step dancing friend had a more serious version of the fracture and he volunteered to let us compare our x-rays. Now I was officially having fun. My daughter’s plane was delayed and she and her brother arrived at my apartment at the same time I returned from the hospital. My kids took over where Lewis left off. Julie and I were still scheduled to leave for Massachusetts in the morning. Here I descended (or arose) into new age heaven. We all went to see a healer who told me that my heart chakra was closed and this was preventing me from healing my cancer. Next two young healers, friends of the B&B owners stopped by and changed my vibration. I enjoyed the ritual, but found myself annoyed by all this talk of my control over cancer. The idea that I had allowed myself to get cancer was appalling. It made me feel so guilty. What a failure. It was terrifying to think that if I were really open and pure, I could heal myself.