I’ve decided that I will do a 2-part Friday posting. I want to write about my thoughts and feelings PRE St. Jude Children’s Research Hospital visit and hopefully write about good news and the experience POST St. Jude visit.
Today, I want to write about Fear and Faith since I currently have pre-visit “scanxiety”. “Scanxiety” is a relatively new term some people use to describe the associated anxiety of undergoing MRI scans and waiting for the results. On Sunday, my husband and I will fly to Memphis with our daughter. We’ll enter the St. Jude Children’s Research Hospital on Monday morning when Marit (daughter) will be “put to sleep” and have a brain and spinal MRI and we will undoubtedly nervously await the results of her 7-year post diagnosis scan results. While thinking about writing this post, I loosely counted up the number of scans Marit has had. I concluded that she has had 20+ MRI scans in the last 7 years. An overwhelming number when I think about it. And then I started thinking about the surgeries, IVs, units of blood and blood products she received and my head can barely even compute it, so I just stopped thinking about most of it.
Of course, there is only so much denial I can be in when I will have to re-enter the sacred grounds of St. Jude come Monday morning. Prior to entry, I also feel the need to mentally prepare for the anxiety of it all. I am fascinated with the people I know who seem to be able to function better telling themselves to expect the best when scary or unforeseen circumstances arise. I have never been able to train my mind to think this way. I find it more reassuring to prepare for the worst so that if better than the worst happens, I’ll be elated. There was literally one time when I decided to try not to think about the negative possibilities, and guess what happened? I heard the words that brought me to my knees. Brain Tumor…I would rather not be shocked, if I could help it, in the future. I think preparing for the worst is ok while perhaps expecting and hoping for the best. In the case of this upcoming scan, I am comforted by reminding myself what our neuro-oncologist said to us a few years ago. Which was: “I’m more concerned with the long term effects of the treatment now than I am of the cancer’s return.” Next week, I shall write more on that topic-treatment and long term effects that is!
In thinking about this post, I decided to look the word Fear up in the dictionary. See Definition below. Interestingly, right within the body of the definitions (example number 5), cancer is cited as an example of something people fear.
Without a doubt, I was scared out of my mind for much of my journey through St. Jude and beyond. I was so afraid that my child would succumb to cancer’s grip and she would leave this life before I might. Would I love to profess that I “held it together” gracefully throughout the experience? Sure. But did I do that? Not so much. My family, my newly found friends there whom I refer to as my St. Jude Soul Sisters and the various staff could attest to my fear and expressed sorrow. I can’t lie…I cried daily, was outwardly angry and depressed throughout a lot of the experience.
Last Saturday night one of my closest friend’s Mom’s fell and broke her neck. Nearly a week later, it appears she is out of immediate danger and may make a close, if not full, recovery from the injury. This will certainly take time, patience, much effort, love and support and every ounce of inner strength imaginable but will hopefully happen. While speaking to my friend for the first time after hearing the details, I found myself uttering these words that I clung to in the midst of one of the scariest times I endured with Marit (an 18 day “disastrous” shunt failure hospitalization following nearly a year of cancer treatment at Children’s Hospital, Mpls. ): “I believe, God wants us to live in hope and not fear! ” Those words were delivered to me from the pastor of my church. (St. Philip the Deacon Lutheran Church-Plymouth,MN). My aforementioned friend and I attended that church in our youths and into middle age. I am still a member. My friend indicated that those words provided comfort to her when I repeated to her what our had pastor told me. I want to believe our pastor is right! ( Also, any prayers for Sandy Robertson who is recovering from her neck fracture are very much appreciated. She has a Caringbridge site as well listed as: Sandy Robertson).
Next week I would also like to write about the continuing questions about why some people’s lives are “saved” via medicine and prayers and why some are not and how I am not sure saying we are “blessed” is the “right” way to frame it. I still have many unanswered questions about many things and how God “thinks”, “works” etc.
Fear is so terribly paralyzing, I think. Sometimes I get brave and ask myself: “What would I do if nothing scared me?” It’s a rather empowering position to contemplate!
One night I finally had somewhat of an epiphany while “hooking her up” to her central line that she was being fed through and getting her medications/ blood through and blood work drawn from. I realized that if somehow hope no longer existed for life on this earth, I could still hope for a better life in paradise and that FINALLY gave me a small portion of peace. If it’s true that the only thing any of us can be sure of, is death and taxes, then I find it comforting to believe that what awaits is better than this existence.
That leads me to write just a bit about Faith in relation to fear. I often see this line posted on the news feed of Facebook. I’m not sure if it’s true but I find this interesting if it is:
Again, I cannot claim to have demonstrated constant faith nor can I claim to have not questioned all the wherefores and whys of the “scary” situations I have thus far navigated. I definitely believe I need many reminders to “keep the faith”, believe and trust that someone/thing is bigger than anyone and anything in this life.
So with some of those quotes in mind and the support of family, friends and others in my life, I am hoping to be able to post again next week with another “Stable” scan behind me and with faith and hope that the future will continue to look bright in this earthly life for Marit.
Thank you to any/all of you reading who have supported me and our family in the past and continue to do so via prayers, kind words, sympathetic words and in so many other ways. I definitely feel blessed for that!!!
I will have you guys in my thoughts and prayers until your next post. Travel safely and best of luck!
Beautiful and touching post. Wow! Thanks for sharing! Love you!