Climb every mountain, Search high and low, Follow every highway, Every path you know….Sound of Music

I have been up the mountain and was searching, searching, for my chemo pill! You would have thought I made up the drug in my kitchen and wanted to try it because it sounded fun. I spent yesterday and all day today until 3:30 when the specialty pharmacy said it would be delivered by 8am tomorrow. I will believe it when I see it! The easy part came after the team determined everything was a “GO!” and I took pages of notes about the dosage, the pills I should take after/before/during, the issues to look for, the issues to ignore, the method to the madness and finally, the comment that it is worth the try. As they told me, I can always go back to my every week at the closet. I had already determined that I did not want to go to the Hoag Cancer center for my blood tests. I talked to the Hoag hospital and they told me that I didn’t sound like I had cancer. Of course, I was thinking, what does someone  who has cancer sound like?? I explained that the last place I wanted to go was the cancer center. Yes, I have cancer, but I don’t want to be around other people who have cancer. I needed options. They were helpful and found that the brand new hospital at Irvine has a lab with 90 minute turn around and could set me up for weekly tests. YES! Sounds great!

Then, the fight for the pill started with the pharmacy adventure or should I say nightmare. One calling another pharmacy to the specialty pharmacy started this crazy game of telephone. I gave all my information during a 30 minute phone call only to call back to find that it disappeared. Second call, start the process again. I barely slept as I had no confidence in the process. This morning at 4am I called the specialty pharmacy which is in central time. Oh great, all the information that I spent over an hour on the phone had disappeared. First call, guy who just decided to breathe heavy without making any suggestions and listen to the silence had no options for me. I called back and got girl who seemed confused and had to start the process again. This led me to another girl an hour later who stated,”we’re working on it.” I explained that “working on it” was not going to work for me. I need confirmation, shipment date, tracking number, so I would be placed on hold again. I called back and explained that I could not drive when they suggested I go drive to find the pills. I also explained that this was not a blood pressure medicine. I have cancer and would they like me to go to the hospital. They didn’t need to know that UCLA has a chemo closet. I continued to make calls every hour from 6am until 3pm. It was delightful at 1pm to be told that they don’t think they can get the pill to me until Friday. What? I asked for supervisors and told them they are responsible for this gigantic error. I had names and times that I talked to all these employees. How dare they do this to someone who has cancer! How dare they do this to anyone (that is what I was really thinking). I really kept saying to myself, “what do the other people do?”…It really is awful. Could people who are responsible for such important expensive medications be this ignorant? The last call was the one that I almost wanted to laugh when they told me they would have the pill to me anywhere from 8am to 5pm? This was not a call to the cable company to fix my cable tv! I asked the person if she wanted to escort me in the ambulance due to disbelief that no one could understand after the 200th time that I needed the pills by 8am. When I did talk to someone with half a brain, she informed me that in 2 weeks, I should start this process again for fear that this insanity would repeat itself.

I talked to all nurses with a strategy for the pill. Go team chemo pill! I have got pills and patches for every potential ailment. I have nurses calling me on Saturday to double check that I did not implode from constipation or explode from other “stuff”.  I should be covered and am not looking at the short term of aches, pains, nausea, and more. I am looking at the potential for freedom of more than 2 to 3 days. I am looking forward to driving Alex to school tomorrow and not having that knot in my stomach and the sensory memory of the smells of the chemo closet with the images of those faces. Yes, I realize I look a little gray, but I try to put enough make up over the grayness to cover the cancer up! So, wish me luck, say a little prayer, and click your heels…I am ready for the next ride!

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One Response to “Climb every mountain, Search high and low, Follow every highway, Every path you know….Sound of Music”

  1. Ruthie Says:

    Sometimes you just have to wonder what people are thinking?! So, in typical “Joanie ” fashion, when the going gets tough (or tougher I should say) you get going! At least you can see the “ridiculousness” or “humor” to all of this, otherwise it would just be a waterfall of tears – you know if you’re not laughing you’d be crying. Enjoy your freedom and days with Alex!!!

    xoxox Ruthie

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