Rainy days have strange effects on me. Some days it makes me groggy as I feel it in my body…especially my right hand. That was my yesterday. I even smashed my index finger that morning within the umbrella as I was closing it; I never felt a thing–just a small pinch but it was only when I looked down to see why the umbrella was not closing did I see my finger jammed.
Another rainy/cloudy day today, but completely opposite. Today was my motivation day. I went supply shopping: paints, paintbrushes, canvases and various add-ons for my upcoming paintings. Yellow Spring’s “Art on the Lawn” festival is only a month away. (More to come on that topic!)
Today I was focused on the broad spectrum of details and errands that needed to get done, even though my right hand seems a bit swollen and my arm is tense. Like an equation, I am not always that full of energy. Yesterday I just focused my attention on one thing at a time. My favorite being a book. I was achy with sick feelings in my intestines, so I made a cup of Chamomile tea and picked up where I left off in Through Gates of Splendor, by Elisabeth Elliot. I was determined to finish the last few chapters.
Growing up, we knew the story of these five missionaries. Nate Saint, Roger Youderian, Ed McCully, Pete Fleming, and Jim Elliot who all followed God’s calling to show and communicate the love of Christ to those tribes in Ecuador that otherwise had no contact with the outside world. These men were at the time, the same age range that I am right now. I sat thinking of this…how these men gave everything for the Gospel. They were taking part of God’s plan to reach the nations, ultimately never seeing the fruit of their labor this side of heaven.
A few months after the deaths of these men, their story was recorded. The first copy of Elisabeth’s book was published in 1956. The edition I pulled off my parent’s bookshelf was the 25th anniversary edition, 1981. As I read the Epilogue II, I came across this conversation that Elisabeth had with Corrie Ten B0om:
“Sometimes,” she told me, “I have said, ‘L0rd, I must have something fresh. I cannot go on telling the old story.’ But the Lord said to me, ‘This is the story I gave you. You tell that one.'” So Corrie encouraged me to go on telling mine. (pg. 266)
And this encouraged me. I set out to write blog entries and feel like I am sharing the same story–repetitious. I want something new. But this is my story. and God wants me to tell it. So a new chapter to my story happened this week:
Tuesday evening I started my first dose of the chemo treatment, Sirolimus. I take it every 12 hours. I have to be consistent with the time, so I chose to take it around the same time I take my other medicines. So far I have had no side effects.
The chemo itself is very different from the other chemo treatments I have taken in the past. It does not feel like a chemo. Of course this is the first time I have had to keep medicine in the refrigerator…that could be part of it. The recommendation for taking the solution is to put it in a small 2 oz or so of orange juice stirring it a lot, drinking it and then drinking water or something afterwards. If it tastes the way Marcia says it smells, then I am double blessed as I can’t smell it nor does it change taste of my orange juice. Tonight I thought I would try the other recommendation for taking the medicine: in chocolate syrup. It was disgusting. I think I will just plan on drinking lots of orange juice for a while.
However, this chemo can cause mouth sores and so I have been given mouth care instructions to help prevent or treat these sores. First, a reward: I get an excuse to eat pudding, ice cream, applesauce, yogurt, ice cubes or pop sickles before and/or after as the cold and smooth will help prevent mouth sores. I have always been one for flossing and brushing my teeth after meals so that has not been a problem. They did give me a “recipe” for making my own mouthwash as I am no longer allowed to use store-bought ones due to the alcohol content used…even if it says “Alcohol free,” I am not chancing it.
My diet is much the same as it was before, except now I am a bit more cautious on going and getting that white mocha, as I am to watch my sugar intake. God must still want me to learn self-control. There are a few others on the list that I need to watch–eating red meats (which I don’t do often anyway), watch the different fats in dairy products and limit egg yolks to 3 a week; egg whites are fine. They warn against eating spicy foods as they can cause sores. I need to drink lots of cold fluids, eat lots of fresh fruits and vegetables, and get enough fiber. Even if I wasn’t taking this chemo, it is good eating habits to follow.
I am thankful right now that my body has been tolerating the treatments and will just have to take it one day at a time. I will have labs done every week and my first clinic visit to Children’s is at the end of the month. Do I think chemo is working? I don’t even think I can honestly answer that. My body changes from day-to-day. I note more aches or strains, more numbness or bad balance. There are always things at the back of my mind or new physical challenges to overcome.
My story is not yet complete. I know this. Some chapters seem to fly and others seem to drag on endlessly. Some pages make me laugh, some leave me in suspense and others make me cry. Like reading any book, you have to turn the page at some point to continue reading. If I focus on only one page full of th0se physical sufferings, I will never get to the ending or get to share the new things learned with you. I might just find out that the best part is only a few pages over.
My Life with NF2 