“Then I remember to stop thinking. I remember that today is just today and that is all that it is. I take a deep breath in and I realize that in this moment I am fine and everything is okay.” Max Greenfield.

It is amazing when you have a motivation for getting over your side effects quickly. My motivation was to be at the book fair which I have organized with an incredible group of women each year. My first days were a bit shaky as my body wasn’t following my mind. Despite my new routine with electrolyte water, my body craved rest and my fog was too much to face the group. I fought on and by Tuesday I was seeing the light even though my teammates were forever translating my half sentences like a game of charades for a day or 2. They laughed with me and not at me and protected me. Their care and kindness was like a giant invisible hug on a minute by minute basis. Their smiles encouraged me, their trips for emergency lunch delivery kept me nourished, and their knowing nods of acceptance allowed me to illogically continue my strange pace. What brought me the most joy was seeing the students of the Jr crew ( students working at the book fair) on a daily basis. These 4th and 5th graders took their job seriously and often I would think they were much better at helping than some parents. Their honesty, commitment, and dedication (giving up a week of recess) were impressive. Of course, there were some hic ups and one (only one) entitled child who blatantly lied to my face, but the 33 others were amazing. This was on the job training and I had so many conversations with them about this being a real job. They all knew it as a fun experience, but they learned real life math and business skills without really seeing it as such. I also had some very real conversations about what was bothering them like their fears or anxieties and what made them have the best day ever. I cannot explain how wonderful this made me feel as I wanted them to not only have this experience, but selfishly instill in them my hope, my confidence in them, and some coping skills.

Having my mini vacation from cancer was short lived as the reality of Thursday’s blood test came too fast. The one time (I know I have said this before ) that I put my faith in the hands of a process that had been working since February I was faced with the reality that you cannot take a break from the job. It was a disaster, my usual front registration team absent and I was faced with the original idiot who could barely do one task at a time. She proceeded to completely make my order into a mess. Luckily, my dear blood drawing lab manager and favorite employee came to the rescue. When it takes 4 people to fix the order, I think it is a sign that this woman should not work in registration. Of course, the mess up continued with the results. Eventually back on my cancer job, I got it all fixed. I should have known what happened prior to entering the hospital was a big SIGN! When I entered the hospital, I seemed to be feeling a lot of air from my behind area. I was wearing a lace top with tank underneath, but wondered why the air was blowing coolly on my bottom. As I almost entered the hospital that morning, I realized that my skirt had fallen to my ankles because if forgot to tie the waistband. Glad I didn’t follow the nudist approach recommended to control the blistering side effect and I was even happier that the lab manger was behind me. She later commented that she was hoping I would realize before I entered the hospital. This was worse than a tuck in of a skirt into the underwear. Typical Joanie.

My results proved to be “safe” for me to be out in public, but I should avoid the coughing and spitting children. My tumor marker stayed the same as the week before, so we will see what happens next week. Of course, being on my feet despite my lotions and potions did not help the blistering reptile feet. Oh well, the price I pay for freedom.  My cancer job begins again next week as I have several doctor appointments.

My other blood tests came back, but I am not sure what it really says except that I am more broken and not sure if the doctors have any ideas. This will be my next project especially since there is the big conference in June and I need them to be thinking of me when shopping the new drugs. The tests show that based on all this, my cancer will not go away and ongoing chemo may be my job. So it may seem that I may not get the vacation from my cancer job that I always dreamed about, but I still have hope and my thoughts are that if they don’t fully understand my broken genes or these blood test results showing my broken immune system that they cannot know. If they had answers, would I still be on chemo for over 2 years now. I must think like this and continue to focus on each day. I cannot worry about what is not in my control (. And you shouldn’t either). We can only be in the now and enjoy each day, each hour. Having lizard feet is not helping my moments of walking around the town. Of course, this ride is a crazy one, but it is my way of dealing with my cancer job.  As Jessie Rees’ philosophy is NEGU, never ever give up, I plan on following her inspiration as I continue this journey.

 

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