“What you don’t have you don’t need it now. What you don’t know you can feel it somehow.” U2 Beautiful Day

While driving down the coast to San Diego, I hear Alex’s voice in my head saying, “no texting while driving, you will go to jail”. He never said anything about whale watching and driving, so I scanned the horizon for whale footprints. It is gray whale season, so you never know. I flipped the radio stations to find an upbeat song to re-focus my mind away from the image of my nieces, nephew, and Alex  hugging me in a giant group hug before they left. This image gets me tearie eyed and who wants to see me with smeared eye make up? I later find that the answer is my doctors at Scripps.

At Scripps, (despite their inefficiencies) their humane team approach is overwhelming. They wanted to ensure I have every chance of using my vaccines, if I want them. I say, why not? The more treatment I get, who knows what will work! I had a team working on every body part and checklist. We joked to see if I am flexible enough to get my blood drawn while being examined by the doctors. My legs would not stretch that wide. (I am not that coordinated.) They expedited me at every test. When I walked into the main hospital, the first response was that I would have to wait hours, but then they pulled up my order which may had said, “lunatic cancer patient” or “expedite or she will go crazy”.  I was quickly escorted by several hospital workers to my next tests which must be done for the crossover study. The laughable comment came from the doctors who said I am too peppy and upbeat which makes it difficult for them to know I am feeling bad or really as sick on the outside as I am on the inside. Good to know! Next time, I will make it easier for them by looking depressed and smile less?! Are you kidding me? It is great to know that I still don’t look as bad as I feel. Also, reminds me why many of the patients there are in their pajamas. I may need to wear my pajamas next time for a fast pass.

The day was long, but not as “painful” as it could have been. Unfortunately, I cannot say the same of my evening. Around 5:45, Jim gets a message that UCLA  may not be able to give me chemo until Friday. No way, you have got to be kidding is what I thought. I have a 3rd recurrence, arranged for child care, don’t want my entire weekend ruined from the side effects, and this is just plain inhumane! I guess I am not the priority of the moment. I know there is always someone worse, but I don’t want to be that person. I was upset and Jim was upset. My symptoms are increasing every day and to me every day counts. As my mom said, “who would ever think that a patient begging for chemo, cannot get it?”

So, I proceed to page the doctor over and over even leaving a very tearful message on his cellphone. I had to make myself the priority. Jim and I decided the camp out approach will be best. Do they really  want to look at my face all day? Of course, I put all my symptoms in an email too. Got to love liability,  right? Suddenly, a tearful conversation gets the doctor to say that he will make it happen. I would think I should be high priority to someone in accounting. With my sticker price of chemo for now 20 months, my year to date income for UCLA is over $200,000 not including surgery.  I cannot forget the business side and I am sure they know it too!

Best of all came the lemon cupcakes with hand rolled caramel fortunes which came from Elina and Alexis for a fast pass at UCLA. The fortunes are quotes from my blog. My mom thinks this will work magic today. I am sure if it isn’t my pathetic face looking really desperate, it will be the magic cupcakes! We’re off to camp out!

 

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2 Responses to ““What you don’t have you don’t need it now. What you don’t know you can feel it somehow.” U2 Beautiful Day”

  1. Gail Rosiak Says:

    Hope your cupcakes and “camp-out” worked and everything fell into place. Thinking about you (as always)–Only good thoughts for a Happy and Healthy 2012!!!!!!!!
    Hugs,
    Gail

  2. pam! Says:

    XOXOXOXOXOXOXOXOXOXO

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