The only way to make sense out of change is to plunge into it, move with it, and join the dance. Alan Watts

 The day of changing the drug happened. I decided that this was my best choice on what we have learned from our mistakes in the past. If you looked at the picture of data, it told a story. The key is always that you look at the data because for me by the time my docs look, my cancer would be out of control. Instead, my cancer is growing fast, but not at the record breaking speed. It is a difficult place to be. To face change, to face reality, and it always happens at the worst timing ever. Just like the boulder flying into the windshield, the broken room in Monterey, and the maintenance on lab equipment that all my docs need the results to make a good decision, I am convinced there is a cancer candid camera following me around. You really have to laugh or take a few moments to cry. Yes, my moment happened with Alex’s Principal of Middle School. Luckily, like me he likes to laugh when there are situations which have no answer and had no tissue, but offered me some glad bags instead!

Honestly, my visit to Hoag cancer center for a simple blood draw is worth a mention since it is so unbelievable that people who work for a hospital talk to patients like we are idiots and without any bit of compassion. I have learned over the years to expect a level of “service” as a cancer patient. I have visited USC, Cedars, UCLA, City of Hope, Scripps, and MD Anderson. My expectation of level of service is very simple. It is to treat people with kindness and a teeny bit of compassion. When I entered the cancer center, there was an ambulance out front. I just didn’t want to think of another cancer patient falling, but was reassured that there wasn’t a crisis yet. Then, I learned that yesterday was a day for implementing the sorting of patients by some new method of madness. I was sent to a closet within a closet with zero waiting area. I decided to stand. Looking around, I decided that this new method had to be administrative since it was without thought to a patient. Based on my previous closet experience at UCLA’s closet, this method was clearly in the style of either 1950s cancer center or maybe 1970s. Psychologically, this new method was not good. Who wants to enter a closet and get any drug? Plus, sit too close to the next patient that you could hold hands even though you don’t want to hold hands! Of course, I voiced my concerns. Looking at the faces of the patients, I felt their pain and saw their sadness. I wasn’t going to let it zap my positivity. I got the first results of my blood test for my counts which were surprisingly good. Power of the chicken! I am becoming a chicken I think! Too much clucking from me for sure! I was assured like normal that my tumor marker would be back in 3 hours.
So, instead the mystery began and I had no lab results. I called the lab and was told the machine was broken. I couldn’t understand and began to ask more questions and was transferred to a supervisor. The supervisor told me that Tuesday was maintenance day. I asked who decided that tuesday was a good day to take the machine down after Monday was a holiday. This person told me that she didn’t have time for me and Tuesday was maintenance day. Too bad so sad for me. She talked to me like an idiot and had zero bit of kindness and compassion. Even though I told her that this number would determine my next chemo so it is a matter of life and survival. She repeated that she had no time for me. I asked for a manager. I called the manager and he was shocked that I had his number. He wanted to point the finger at someone and wondered who told me to call. I told him it is called the Internet and how I found the number and it was all my idea. I asked him about maintenance Tuesday and he felt that it wasn’t the cancer center’s concern. He was more concerned about how I got his number than solving the issue. I explained that by not communicating this info, it creates more stress for patients who can become angry and upset with the nurses who could have reassured the patients by communicating the problem. I told him after he told me that I was not first in line, to pull my blood and put it in front. He said he would consider what I said….I know now that his error in lack of communicating caused a 10k mistake because the pharmacy got my order too late and mixed the wrong chemo. I bet he will be changing his Tuesday maintenance especially after a holiday. After talking to the manager of the cancer center, she was shocked to learn that the lab does maintenance in the day and said always it should be done in the middle of the night? Plus, she told me about the new sorting of patients which makes sense, but she lacks space to make it happen in a pleasant way. This is the new closet design. She informed me that Hoag Irvine was going to do infusions in the future. That would be so much closer and I love Hoag Irvine for many reasons.
On Tuesday night, my amazing UCLA doc called me about 4 times and discussed over and over options. He told me of a new drug which would work for me that was just approved and matches my weird genetic mutation discovered by Foundation Medicine (that is an NF1 mutation). Jim came up with the idea for the drug swap based on his analysis of what has worked in the past. The Clearity foundation docs, Dr Deb and Dr Laura are also on our team. They agreed with the swap and came up with some more ideas. These ideas matched my UCLA Dr K’s ideas. It seems that instead of 2 options that there may be about 5. This gives me piece of mind. There was some question of dosage since this drug combo is used more often in gastro cancers. First, the dosage came back as if I weighed the same as a horse (Jim and I knew this dose would kill me), so luckily my Dr K found a study in Japan which was found for my cancer with a weekly low dose combo. OK! We are off with a plan. Plus we are still waiting the results of the tissue test for City of Hope. This Japanese study had actually 2 women who achieved total remission. I can dream can’t I???
This new drug combo has its positives and negatives. First, I will grow my eyebrows and eyelashes back. Yes, for no more constant blinking to avoid dust in my eyes. Yes, to avoid drawing on crooked eyebrows. No more cold anything…eating cold will feel like razor blades in the throat. No more opening the fridge or freezer. Where are those gloves?  I do feel like crap and was in bed all day yesterday. I am praying and hoping that this Jewish new year brings the power of this new combination to work!
On a fun note, Alex talked to the congregation at our Temple about what he saw at the local food bank which was empty shelves. Jim said he did great! Alex said his legs were shaking, but Jim said you would have never known especially when he convincingly strongly stated, “give up your Starbucks and buy a box of cereal to donate!” love my boy!
I get these surges of anger followed by tears, but each time I am reminded about how lucky I am to be alive. I remind myself of my amazing family, friends, cheerleaders, and all those I met for an instant who changed my life. I look outside and see the sunshine. I know I will find mine. I hope you find yours and know how lucky you are that every day you don’t have to walk the tightrope of life like I do. It isn’t a pity party, but just the realization that your crisis is YOUR crisis. Just gain perspective, look outside, see the sunshine, and take a deep breath. You will be happy you did. I always am happy to live in the now. Find your happy moment today!
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One Response to “The only way to make sense out of change is to plunge into it, move with it, and join the dance. Alan Watts”

  1. Patti Shapiro Says:

    I’m sending you prayers that 5744, aka 2013-2014, brings you the strength to overcome all obstacles and to keep your positivity and good humor in the forefront. I’ve been following your blog, seeing the sunshine, and finding my happy moment each day. Thank you, Joanie. (I’m Dani’s mom)

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