“We’ve come too far to give up who we are, So let’s raise the bar and our cups to the stars.” Daft Punk Get Lucky

It is raining hair and my eyebrows are almost gone. Without eyelashes and nose hairs, things get into different spaces since those tiny hairs are not there to protect the areas. I am now constantly blinking and covering my nose as if it is winter weather here. I am so thankful to be alive, but understand that getting ready is not an easy task. In addition to my new routine, I have the breathing treatments to deal with, so there is no quick exit out of the house. If you see me without a hat, without eyebrows, or with only one eyebrow, just try to not look so shocked. I am never high maintenance when it comes to getting ready and with so little free time, I tend to miss part of the beautification process.

My conversation prior to chemo with one of the charge nurses went very well the day before chemo. I had to make every effort to prevent any additional stress if possible. For example, I want my results of all my tests as I am “in charge” of my treatment (well kind of), and I know how to get the reports if I need them.They’re mine. Yes, I realize that not all patients are like this and some docs don’t have a partnership with their patients and some patients rely solely on the decisions of their doctors taking a passive role. This is all fine, but this does not work for me. I promised and crossed my heart not to freak out with seeing the results. I have been there so many times and felt the fear so many times that I care to remember. We are on a good trend, but this is not reason to be complacent. Now is the time for planning as we know from docs that the long term efficacy of the drugs has an hour glass where the sand runs out eventually according to their studies. Since we are in uncharted area, we have to reach out. We have to reach out far to scientists who have been such a big help and are so kind. We now have to reach out to the actual drug companies. You can do this…anyone can, but the trick is finding the right person. This is where the scientists can be helpful. So, next week before my visit to UCLA for chemo, I hope to find THE PERSON who may have some answers for drug dosage going forward.
Chemo went fine and even without Jim, it seemed to be okay. There was a cell mate who was bald and looked pretty down. When I heard her story, I realized why. It was a long and sad story. Cancer after cancer and surgery after surgery…luckily, I had my substitute driver and friend who made some pretty good jokes once I admitted to bringing my packed lunch for chemo camp. She offered to come back with a hibachi, s’mores kit, and friendship bracelets. This broke the ice and I thought of my cousin Margie who I would normally share these stories with, only she is now gone. My heart still hurts so much and cannot believe she is gone. My chemo drug was done too fast since my primary nurse was at lunch. I missed the administration and did not look at the clock, write down the time. I started getting a wave of nausea. Luckily, I had my drugs, but I was angry that I missed my clues to get things done right.
I also reached out to the American Cancer society for the beautification classes, but realized after a minute or 2 that everyone who talks to a patient must be convinced that the patient isn’t ready to jump out the window. Yes, it does seem strange that after 3 years, I would like to get some help with makeup now that I am again missing eyebrows and eyelashes. I did try before, but these classes are never offered on the right day or time. Now, there is one, so pencil me in. First, I had to answer the series of questions and I guess it didn’t help that I told the person that my skin color was greenish gray. I realized that to get my special appointment, I had to act more “cancer like” or possibly fake cry. I tried the whimpering sounds, but I only sounded like I was coughing. Finally, I passed the test.
With the June gloom happening in July (almost August), I am enjoying this weather a lot and taking advantage of my free moments to make the most of the summer time. I like waking up and having the luxury of time to play some jokes on Alex. One morning I greeted him with a spock wig and ears telling him of a new pneumonia side effect. Another morning, I played “light’em up” by Fall Out Boys and did a combination of interpretative dance and my good ole’ Club Med tambourine dance sans a tambourine. Alex is now convinced I am weirder than normal. His rolling of eyes is something fun to see on a daily basis. I hope you are enjoying summertime too!
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