“You gain strength,courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do.” Eleanor Roosevelt

I now admit that my break from weekly chemo allowed me a new perspective and a new approach to my chemo. I had a vision in mind since I had the time away from the closet. Before we left, I opened the door to see the sunshine not only from my friend, but from the loveliest Monet water lily cupcakes I had ever seen. It might have been the flash of memory of walking the grounds of Monet’s house in Giverny that allowed me to escape from what was ahead. I was determined to not allow the nausea invade my mind. I was also armed with a new weapon of electrolyte water by Trader Joes which tasted like nothing. For me, nothing is good when your taste buds have been erased from 2 years of chemo. I brought the book, “Would it kill you to stop doing that” which is a modern day look at manners. Since my cancer diagnosis, I am more aware of how people treat each other or don’t treat each other. This involves people of all ages especially the young and more often adults who lack the kindness and sensitivity towards others. It is a pretty humorous book, so it kept Jim and I laughing most of the way. With my new determination, Jim and I had a mini date in the car ride. It was our time to talk and enjoy each other as much as one can enjoy each other in traffic on the 405!

We rode the elevator to our destination holding the water lily cupcakes and boxes of donuts. A doctor asked us if we were going on vacation. I started laughing and answered, “a vacation of chemo”. Since I was laughing, he didn’t feel strange asking us if the “goods” were for buttering up he nurses. I responded that they were to thank all the wonderful staff and nurses for doing what they do every day. He must work in plastics or something that doesn’t require strength and compassion on a minute by minute basis. We entered the suite and some of the staff looked beyond me towards the cupcakes. One responded immediately, “water lillies” and others looked as if they had seen a ghost. They had tears in their eyes and then, I understood that they thought something had happened to me and responded with, “so happy to see you HERE!” I understood as I had the same thoughts of some of the friends I have made along my 2 year travel to the chemo closet. Next stop was the infusion pod center. They were equally excited, but thrilled to tell me that all my emails worked and they now have 2 volunteers in the clinic. Wow, I had only expected one!  Plus, they told me that my cousin and I were voted best patients of the year(s). We are both still wondering why we don’t have a bag of swag to prove this title. I will work on that for the next time. Swag and new art work will be my new focus. Yes, this isn’t Cedars with the donations of real Monet and Jackson Pollocks, but they have to brighten this place from the Sci Fi thriller of escape from the Lady Gaga pod city!

Damn my VIP seat is gone and now, I was left with what would be equivalent to a middle seat on an airplane. Oh well, I wasn’t going to let that ruin my vision. I had my blood taken and my nurses gathered around for my chant of ” tumor marker go DOWN, be in the 200 range!”  We were all laughing as it seemed silly, but they said, “why not”. Of course, at that very moment, in my mind I saw the Jamaican woman who took care of my Grandma chanting, “Michael row your boat ashore, hallelujah…” Only my sister can fully appreciate this image! My doctor walked in and asked to see my feet which seemed to ruin my moment of chanting. I realized based on my lotions and potions that there will not be any sandal wearing this summer, so if you know of a cute flat shoe which is comfy…email me. Yes, the hair loss, the taste buds missing, and now lizard feet. I have always had a bit of a foot phobia. Looking down at my lizard feet, I couldn’t help but gag a bit. My doctor said I was doing a great job as the sores were healing. He decided to reduce my dose to the normal amount since he would rather have me stay on this as long as possible especially since my tumor marker decided to take a downward turn. Then, he brought us a 24 page report from the new genetic testing. I was not sure how to look at this, but I saw the cover page lists 3 broken genes. This new test covers 182 genes that they know to be involved with cancer. One is very common and the other 2 less common. This is the future of cancer treatment. Instead of just taking the same ole drugs which have been around forever, this would help doctors know which drugs may or may not work. In my case, there isn’t a drug to fix my brokenness.

My tumor marker comes back just below 300 or should I say in the 200 range, so my chanting worked!? My doctor was thrilled and I gave Jim and Alex a scare when I saw the email and screamed. Mom on steroids screaming could mean 10 different things for them, but it was a scream of happiness. I decided to chant my “normal by July”. Of course, I was still not speaking in complete sentences, so Jim just kept saying, “squirrel”.  My mom on the phone told me that while it was nice to hear me breathing on the phone and not finishing one sentence, I should probably rest. I followed all the rules because I wanted my freedom.

Our next day, we spent an hour on the phone reviewing with the doctor all my 3 broken genes. I started taking notes as if that would help the words disappear out of my mind, but I did hear that my one broken gene was most likely the reason for my cancer and my cancer would not go away because of this broken gene. It was all very complicated and I kept focusing on the other 2 broken genes. One is unique and no one had seen this before, so my interpretation is that they cannot really know. These tests are great, so that they don’t give me a drug that won’t work, but these tests were on the original tumor. My thought turns to mutant cancer cells. This new discovery provides us with more knowledge, but again even more unknown. I remain focused on my freedom and my proactive approach to side effects. I look forward to continued sunshine and sharing my day with my family. One day at a time is what I have to do. At the same time, my motivation may seem strange to some, but I prefer to be among people than to be alone with my thoughts.  Wishing all moms a very happy mom’s day! Enjoy the day!

 

 

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3 Responses to ““You gain strength,courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do.” Eleanor Roosevelt”

  1. margie Says:

    So thrilled to hear about your tumor market going down! I bet all the nurses were glad to see you. It’s a good thing we aren’t there on the same day. Probably would be too much for them!! Cupcakes sound delicious. Have a wonderful Mother’s day cousin…Love you! Margie

  2. margie Says:

    I meant tumor marker…M

  3. Pendar Says:

    I am also so happy to hear about your tumor marker going down. You are always in my prayers. You are right…one day at a time is all we can do…

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