“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this inner light.” Albert Schweitzer

I am reminded often that my perception of myself doesn’t match the reality. While living in my pretend world, I push my body to extremes and hear it cry out or scream, “stop what are you doing!” This second chemo treatment, I kept a log of side effects each week. It seems that my “freedom” from the weekly chemo is not as free as I thought. I have to write a book on each chemo and controlling the side effects because I am not willing to stop making the most of each day. I still have hope that the treatment of cancers will change from using the same drugs from 20 years ago. Until then, I am determined to control these side effects.

In the meantime, on Friday Alex and along with some other students started the day at 7am with a Tahitian dance for the school (book fair theme teaser, I am the chair of the book fair-my last book fair). Then, another surprise, I submitted the application to OC Dept of Ed for our students PAL group for PAL program of the year and our school won. It was so joyful to see the students excited about the win and know that they really all are super stars. At the meeting with the students, they talked about what they learned and it could bring you to tears what these students said about PAL changing their lives. Of course, we ended the day with our table to raise donations for pediatric cancer until 7pm. This was the time that Alex told me he was wiped out and I finally listened to my body. Even though my body felt as if I couldn’t even move, my mind was saying yipee since my mouth sores were going away and my feet were better.

I was so excited to enjoy my weekend, but Jim and Alex started feeling sick.  My frustration grew and sadness overwhelmed me. Finally, a weekend free from my side effects, and my boys became casualties of their stress and worries, germs or whatever. I watched the episode of The Big C where Susan Sarandon played a survivor who sold “joy retreats”. The episode had humor and truth. Where’s the joy in having cancer? How can you find the joy when more of real life challenges combined with your cancer job seem to be without joy?  Alex had a fever, so he missed the pediatric cancer walk that he was looking forward to for months. I am always confused when these curve balls are tossed to me, but I decided to get ready for the walk.  My creams and potions seemed to be a recipe for success as I convinced myself that I had to finish the 5k if not for myself, for Alex or for the real reason why Alex chose to be the team leader- for all those pediatric cancer patients who are unable to walk the race themselves.

I did walk the 5k without my thoughts on my ailments.  I looked at the team shirts that surrounded us with names of children who lost their battle in their cancer job. This job shouldn’t be accepting of such young applicants. I walked with friends and got to talk about who knows what, but enjoyed being with them. When the race ended, I was sad to be without Alex and Jim. I talked with a pediatric oncology nurse who pointed out her patients. These patients are all under the age of 12 and are on many of the chemo drugs that I have been on or are the same drug as me. She expressed her joy at seeing these patients finish the race as they were on their “off weeks” like me. She pointed to the shirts that walked by us and told me those were her patients too. She explained the prognosis for many of these children was not great. She also told me they face their cancer job with such hope, determination, and strength. I asked her how she does it and she told me that it is her job. She expressed her frustration with those outside the cancer world who are not compassionate or understanding as they are caught up in what is not important.  Unless you are in this world, you wouldn’t want to see the truth behind the race. It is much easier to look at the race as just a race instead of a race to win a vacation from a cancer job or a race to survive. Yesterday, I found my joy in the faces of my friends and their children, the young survivors, the families of those who lost their children in this race, and am reminded again of living in the moment. I am also reminded that my body was screaming out to rest. When I arrived home, I listened and fell asleep sitting up on the sofa surrounded by my boys and found my joy once again. I hope you find the  joy each day.

 

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One Response to ““Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this inner light.” Albert Schweitzer”

  1. Tara Says:

    I love that you find joy in every day and instead of keeping it for yourself you freely give your joy to others. We are sending much love to you and Alex and Jim always. -The Saylin’s

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