Clinical trials-I am a piece of meat!

My weekend was a giant fog mostly filled with sleep and nausea. I wasn’t sure if the cumulative effects caught up with me or I just blocked out what each time gave me. There were nights when Alex came to our room crying with his bad dreams and there were nights when Jim and I couldn’t sleep. I decided among the foggy days to pick up some of the cancer books on my shelf. Could one contain the secret message that I had been missing all these years? Could one hold a method or remedy for any of my ailments? I started my skimming since my focus was almost gone due to the toxicity of the chemo. One thought kept passing through my head: the power of the mind and positive thoughts. I had seen this time and time again at the chemo closet. I decided to type some mantras to say to myself every night to stop the bad dreams and to give Alex a new direction for his own fears. I also decided from a generous fun gift from NEGU (never ever give up) that I would tape NEGU signs around the house so that if I started doubting, the words NEGU would be in my face and the image of Jessie Rees’ smiling face would continue to inspire me.

On Monday, there was a visit to an integrative doc who had no answers and few suggestions. I have the best fake doc around, Jim who uses every extra minute to research, email, and read any latest studies from around the world. Then, Tuesday was the visit to the clinical trial doc at UCLA Santa Monica office. I have to say again that visiting these different oncology offices makes you appreciate where you are. It took us 30 minutes to find parking and the usual 30 minutes waiting. Never bother to show up early for an appointment since you always have to wait. The place had a bad vibe and I tried to ignore it. Once we were taken back to the exam room with paper thin walls, I realized how much I disliked the place. There is something to be said for feng shui and this place had none. Not to sound strange, but the energy was not good. Yes, I realize it is an oncology office, but something was off. Jim and I manipulated the window blinds while I laughed at the fact that I thought someone from the building across would be peeping into my exam room. We listened to the conversations next door: surgery or chemo, stage 1 and doc says patient should be happy. Cancer is cancer…not sure what the doc wanted from the patient, “yippee I have stage 1!”  Jim and I laughed and I especially laughed since they made me sign a 20 page document for privacy…think they should consider adding listening to conversations from adjoining paper thin walls. I had worn lip gloss and some make up to hide the “suitcases” under my eyes. When I got dressed that morning, I was thinking that I need to look good if I want to be on a trial. I kept thinking of the “pick me” scenario from elementary school playground teams. Little did I know, I looked too good as usual. This doc looked at me like a piece of meat and pushed his agenda without hearing a word I said. Somehow the fact that we had driven for 2 hours didn’t connect with him as he said eagerly that I would have to come there for eight weeks in a row. Oh, by the way he just slid over the fine details of side effects of tremors and diarrhea. Not sure if it happened at the same time! He did add with enthusiasm that the tremors were not permanent, so was the diarrhea? In his words, seats were going fast, so he could save me a seat, today, one day only was this great offer. Oh, he also mentioned an 8 hour urine collection and even more fun some 12 hour days there. I was thinking the entire time that clinical trial docs would get a lot farther if they were trained on the motivation of a patient or even pretended to care about the patient. Maybe, I would consider it for the name of science? He had to do the obligatory exam with the obligatory 10 part questions to make a patient comfortable while the doc examines you. Too bad he didn’t bother to ask me about my group UCLA intern/resident/fellow audience exams with my “missing uterus”. I did not really need the 10 part questionnaire completed. He did not seem to care about my answers anyway. We left or ran out feeling that I was definitely not at this point of my treatment plan. Guinea pig time was not here especially while I have $50,000 worth of medication sitting on my counter for me to try.

To recap the next days…Weds was spent with hours on the phone with the insurance to help them reconcile my account because as I told them that a 5th grader could do this and not sure why it would take them 30 days. Thursday was my day at the Hoag Cancer center where I was convinced that they were giving away televisions or free trips to Maui as it was standing room only. After making new friends, I realized that there are way too many people with cancer all having the same problems. I decided to pass the time by solving other patient’s food crisis taste bud issues. We traded stages of cancer like a game of whoever has the highest will win the trip to Maui either by votes of sympathy or who had the most surgeries or chemo. I knew I was a winner for sure.  Most of these stage IV’ers said it with the “poor me” attitude, but I said it with conviction and enthusiasm. After hours and hours, I did get my news of my tumor marker being higher than we expected. The nurse just nodded his head and smiled saying that he thought I knew to expect this number. It is the nature of the disease. Yes, I know. This is the second time since my diagnosis that I feel afraid. The first time was hearing the word, “cancer” and my name right next to it. I push the fear aside while Alex calculates a projection of my tumor marker based on his fancy algebra formulas. I am happy to provide a complex math problem. Tomorrow is a new day and I will go to USC to see if there are any new ideas or the same 10 part questions once again.

 

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One Response to “Clinical trials-I am a piece of meat!”

  1. terry fierle Says:

    Joannie…we all appreciate your blogs and updates. One day at a time sweet Joannie. Love u so,

    Terry

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