Rock N Roll in the Chemo Closet!

I know some of you are thinking that I actually performed a rock n roll musical similar to Green Day’s American Idiot, but this was not the case. First, I have to tell you that I hear many of your voices with words of encouragement during the drive up to UCLA. With the fashion expertise of my Mom’s hat and jewelry picks and my cousin Kimberly’s hat choices, I thought I looked pretty good despite my “track marks on my arm”. I have to give credit to Alii as we arrived early and I had a telepathic message from Alii saying, “go to Diddy Riese for some fresh baked cookies for the nurses”. So, we did it!

To my surprise, I opened the door to the lobby which is normally like entering a dark cave with the terrible smells (so I deeply inhaled the bag of cookies-one for the front office and one for the nurses station), but found the room to be very bright (new light bulbs) AND removal of broken chairs AND no stinky smells! I made my request for my favorite nurse, and the front office said they would do their best. Instead, I was greeted with the most reserved quiet nurse who usually does not smile all day.

First, we had to do the weight check after she made the usual comment like all the nurses do about the bags I bring to chemo as if I am staying overnight, but 8 hours is a long time and I need all my snacks, tools, tricks, papers, notebooks etc….The nurse was questioning me about how they weighed me last time. She asked, “did you wear clothes the last time you were weighed?” I told her that, “Doctors would not really be happy with me being naked in chemo, so I did have clothes on, but if they wanted me naked, I would be happy to try it.”  My nurse could not stop laughing and even started coughing. She grabbed my arm towards the closet. OH NO! The only 2 chairs left were the facing the wall chair and the holding your neighbor’s hands chair. She wanted me to get going with the blood test, so I quickly handed her my bag of cookies and told her these were all hers to distribute. So, she asked the other nurse when her patient would be done with the best seat in the house. The nurse responded that it would cost her since it is “her station”, so my nurse offered her 2 cookies. Next thing I know after my tests and visit with my doctor, I have the best seat in the closet. My nurse really took the time to fix my IV, so I would not look like a total drug addict after the chemo. My doctor ordered THE blood test to see if my numbers went down. I told my nurse after waving my hands around doing my own version of a  praying dance that I am hoping for good numbers. She looked directly at me and grabbed my hand and said, “I know your numbers will be good just looking at you.” I was definitely looking good compared to the audience and my outfit wasn’t bad either. I also managed to bring a few smiles to the crowd with my comments about my urine glowing in the dark and my assistance with my nurse for cookie negotiations with her fellow nurses. My numbers were great and my doctor told me to keep doing everything I am doing! The best news was that the blood test with the magic number (usually takes 1 day to come back) magically appeared after my doctor followed my nurse telling her he wanted it today. The magic number WAS NORMAL! Normal is 35 or less and my number was 31!!!

Now to the Rock N Roll, I kept hearing music and WOW, now there is music in the chemo closet. It was definitely Rock N Roll and the audience seemed like they would have preferred Classical. I could not help laughing and smiling. Does the staff know it was me who filled out the survey? I gave some of the suggestions about the lights, smells, sounds, visual? Hmmmm…I did not put my name and revised my cancer diagnosis to hopefully disguise my identity, but I think they know….My nurse brought me a bag of hats to pick a hat that someone knitted and donated.  She helped me pick the cutest one! Wow, more swag and then, told me to grab some other swag. Shopping was good in the closet! I also did my usual demonstration of my ipad and kindle. I really think I should get some commission soon or a pin stating that I am “top member of the chemo closet”.

My Mom was on meal assignment which we ate our usual foods, but for me the meds were reducing my taste and appetite. I tried to eat something and my Doctor checked on me once every hour which was so nice. I also managed to assist the nurse team while overhearing that the UPS man had to pick up a box, but they were all busy with patients when the UPS man arrived. I told them he was here and the nurses thanked me and said that was a great help. I told them I am also available for filing or other simple organization jobs, but not so great at toilets. After trying to catch my fellow audience members with a smile, I caught some! What I want to tell all of you as that all these women had “hunches” that something was not quite right, but did NOT have any major symptoms of cancer. They went to numerous doctors who failed to run the right test and all were misdiagnosed like me. So, message to all of you, listen to yourself and your sense about your body. You know your body the best and if you think something is not quite right, keep pursuing it until you have a doctor who will listen. There were a couple of women (one in her 40s and one in her 30s who loves to surf) and they were positive, but repeated their mantras of things out of their control and trying to live for today. I talked to both of them and encouraged them to do what they are doing, and told them the best thing they are doing is remaining positive. Cancer meds and cancer is different in everyone and numbers are just numbers (the statistics are based on averages) and they are certainly not average. We did talk about the rock n roll which they both liked having some music, but not muzak. Since the nurses station is basically on top of the closet, the main nurse came to tell us that the office will be moving in December and she explained the delay and the improvements in great detail. Again, could it be my survey?!? Both of these women thanked me several times before they left and I was feeling so good doing what I love to do (not just for fellow cancer patients), but trying to have people focus on the Now and on the positive.

My hours continued and my Mom and I did some online shopping which was fun. These small changes to the closet made me feel more relaxed and comfortable! We also managed to eat dinner at Matteos  (I recommend it highly if you are in LA and sit in Larry David’s booth for some good entertainment). Before I left, my doctor came to say goodbye. My parents and I thanked him for all of his support. I think my Mom said something about how much we like him and I had to add that I love him. (hopefully, he thinks it was the drugs talking) He told me, “thank you for the entertainment you give everyone”. Wow, my mission is just beginning to work!

Today despite my zero appetite, I have a bit more energy and went for my shot and acupuncture without having someone drive me. I have a better feeling about this time and I think they should do a study about a great facility (no closet) with great nurses, doctors and patient treatment and progress. I know they will find that if you have a healing center, the healing can actually occur despite the patient’s prognosis.

My days ahead will come with some fog and pain, but I am convinced it will not be as bad. Plus this weather is great. So again, I will remind you to get out and enjoy your moments and TODAY!