I have been in a dark place the past couple of days. It's been very difficult to eat. Not because of nausea, thank God, but rather because my taste buds are so fried that food tastes like ash or grit in my mouth. I can take a couple bites of food and then I gag. The rub is everything smells, looks and sounds great but then it enters my mouth and...bleck. It is causing a significant amount of mental and emotional anguish. I've bawled my eyes out on numerous occasions, tears flooding past my almost bald eyelids, throat sore and tight, "I can't eat," I squeak pathetically. This happens about every mealtime. It's so depressing to wake up in the morning with a growling stomach and then to realize that there is close to nothing that will pass this mouth without threatening to send me running to the bathroom.
After working last week amidst this minor crisis I came home Thursday night with a very sore throat, aches and chills. By Saturday afternoon I was in the emergency room with a fever of 101.8 and all of the aforementioned symptoms. They ran the works on me: complete blood count (CBC), urinalysis, EKG, and immediately wanted to take me in for a chest X-ray. I refused this initially due to my diagnosis of Li Fraumeni, a mutated tumor suppressor gene which predisposes me to certain cancers. (In my post Growing Gracefully and Knowledge of the Mutated Gene, I explain this in more detail.) With Li Fraumeni it is often best to avoid exposure to radiation. They said because I was complaining of flank pain they would wait to see if the infection causing this fever was urinary or kidney and then a chest X-ray would not be unnecessary. When the urinalysis came back clear they were very concerned that I had a touch of pneumonia or bronchitis and were insistent that I go ahead with the X-ray. So I did. After a few hours of very excellent care at the hands of the staff in the emergency room at Presence St. Mary's Hospital I was sent home. I had received half a liter of fluid as well as a dose of IV antibiotics while in the ER and was given more antibiotics to take for the upper respiratory infection they detected on my chest X-ray.
On the seventh day, I rested.
Last night I slept for about an hour. As I lay there I wondered how I will survive the next two months on what little food I can get down. Then I allowed myself to think ahead to a massive surgery that is also in my future. I realized I was heading down a dark path and chose to turn my attention to the present in attempt to shrink things down to size. I'm not sure it worked.
I asked myself. "How do you feel?"
The first question I actually answered was, "how do I feel physically?"
My skin feels thin, as if a layer has been shed. My eyelids hurt if touched; my fingertips are all smooth (my iPhone doesn't recognize my index print anymore); my tongue, throat and esophagus feel as if there is something growing in them which causes weird sensations and pain; and the inside of my nose also feels as if a protective layer has been removed. I have persistent ear aches. My digestive system lets me know where any amount of food, liquid or air is at all times. My joints ache. I'm hungry. My system is overwhelmed. I'm exhausted.
Then the question, "how do I feel emotionally?"
And I began contriving ways to tell my husband, friends, family and doctor that I was done with chemotherapy because this "crazy carnival ride" (as I've called it in the past) of being sick or just not-sick-enough to NOT get more chemo is driving me mad. Not to mention I would be scheduling my surgery for late June rather than waiting until late August when my oldest son starts kindergarten and I want to ensure I don't miss his first day anyway.
I was writhing under the weight of the question.
"Silly me," I interrupted.
'Silly me' is something we say to each other in our family when we've done something funny, foolish or absentminded. We don't use the word stupid.
Silly me. While we were tucking our children in to bed just hours before this inner monologue began we had recited Psalm 23. Our four year olds have it memorized. This Psalm holds a few lines that are particularly prudent at this juncture:
"The Lord is my Shepherd I shall not want. He makes me to lie down in green pastures. He leads me beside still waters. He restores my soul...even though I walk through the valley of the shadow of death I will fear no evil for you are with me."
It wasn't until today, the day after the sleepless night full of inner monologues and madness, that I was really able to see things differently. Not until after I started to pitch my plan to quit to my friend Cindy who probably thought I was mad but was kind enough not to come right out and say so. Cindy took my three older boys for a walk while my little guy slept. This gave me time for myself, time to read, time to think. I called my mom to clue her in on my thoughts and plans. She reminded me to "follow the peace" which has been a theme throughout her approach to addressing her breast cancer diagnosis. She encouraged me to look for God's promises.
I read a post from a blog that I follow. Lisa-Jo Baker posted about buying their first house. What does buying a house have to do with seeing things clearly regarding cancer treatment? Well, Lisa-Jo talked about her deep desire to be in a home of her own for the first time ever, with her husband of 15 years and 3 children. It was when she shared about being at there point of "giving up" on her dream that it hit me...Quoting directly from Lisa-Jo's blog, these words spoke straight to my heart:
"And more than that, I deeply needed to believe that this answer was from God and not from the whims of the universe. I needed to believe that when we pray and we trust God with our hopes and we ask Him to protect us from the decisions we don’t know enough to avoid, that He answers us.
Because He is a good God. And I believe this. And I needed to believe the No was a loving act from Him and not just a matter of, “Well, that’s life.”
Because what is all this faith we talk about worth if in the moments of our greatest hurts or hopes it doesn’t count?"
http://lisajobaker.comThis caused me to remember that when treatment plans were first created I felt God's peace and presence. I felt that He had led me to The Block Center and to those I would entrust with my care. Even then I wasn't happy or excited about the prospect of chemotherapy. But this treatment, this cancer journey, this life isn't about being happy, excited or even comfortable. And since it isn't about all that, it makes this promise that came to my mind this afternoon all the more meaningful:
[Jesus said,] "Very truly I tell you, you will weep and mourn...you will grieve but your grief will turn to joy. I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world!"
John 16:20,33
And so, I take heart. I will stay the course. And I do have peace.
Thank you Cindy for reminding me that I can't just "give up". Thank you mom for reminding me to look back at the promises I've received in the past and to listen closely for new promises. And thank you Lisa-Jo for posing the question "What is all this faith we talk about worth if in the moments of our greatest hurts or hopes it doesn't count?" It made all the difference for me today, ladies.
Sarah please read my Facebook message
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