No matter how well I cope day to day, at scan time, all bets are off.
JR's next scan is...tomorrow! (it's taken me all week to write this!) The past 2 weeks have been as I first wrote:
Can I just be a 24/7 basket case, please? As my silent anxiety and PTSD symptoms roar within me, I burry them as far down as possible, topping them with a shaky lid. I have to behave, speak, work and parent while holding it together. At the same time I am fighting really hard to keep steady at the wheel. I work in the mental health field and can certainly relate to the dual experience of coping with a messy internal life while trying to function appropriately in the world around you. Not. easy.
In the weeks leading up to scans I find myself regularly re-living the most traumatic moments of JR's cancer. Seemingly out of nowhere I'm overcome with the memory and emotion of a precise moment from the past. I don't know what triggers a specific memory, but they come at me relentlessly in this pre-scan period. One example from this past week- I momentarily re-lived the debilitating panic attack I had while walking with B and JR through our Cary, NC neighborhood. When I say I re-lived it, I mean I remember what I was seeing, the way the sidewalk blurred beneath me when I doubled over. The way the sticky air felt, it was cloudy and humid that mid-July afternoon. And my emotions and feelings re-played within me -I surged with fear. The panic attack, the only prolonged one I've ever had, was during the tormenting two days between our first visit to Duke University Hospital (on a Friday), and the Monday in which JR had his first MRI. At that initial appointment, the neuro-ophthalmologist told us her biggest concern was a malignant tumor behind JR's eye. And then she sent us home. We had to wait 'til freaking Monday for the scan. When the panic attack came, it felt as though I was literally going crazy and I couldn't stop the feelings of panic, which were rising in their intensity moment by moment. It was the most terrifying experience of my life.
In another memory that floods me, from that same first visit to Duke, I'm on my knees alone in the patient room, with my baby in my arms, weeping uncontrollably and praying prayers of desperation to God for his life. The first of many moments where I felt taken by desperation, on a scale greater than I ever conceived could exist.
Then that Monday, JR's very first MRI under anesthesia, at 7 months old. I had to hand my baby over to a team of doctor's and leave him, unconscious, for the first time. I kept my head between my knees in that waiting room, terrified of spiraling into another panic attack, unable to speak to anyone. Seeing the MRI results and the image of that mass in my baby will never leave me. Being admitted to the ER from there.
The next day, Tuesday, the initial biopsy results and hearing the words "it's cancer", confirming our greatest fears. I relive that moment. At that moment I left my body. It was not a panic attack, it was shock. It was as though I was watching the room from above, unable to hear anything or make sense of the world around me. And when I "came to", the first thing I became aware of was my husband beside me, willing himself in a whisper to "wake up! wake up!". I relive all of this and more -for there are seemingly endless torturous moments from those early days, the darkest days of my life. In JR's treatment year Brandon and I endured prolonged crisis and suffering, and I'm not convinced the wounds will ever fully scar up.
Between scans memroies like this hit me once every week or two (a major sign of prorgess!). But as scans approach they increase in frequency and severity. I share all this because I know I'm not alone. So many of us silently struggle with past trauma, and we need support.
Scan day itself undoes a good deal of whatever healing has transpired within me, and JR too. As I've spoken to above, scan day triggers the past and brings my unresolved pain and fears to the forefront. This upcoming scan is the first scan for which 6 months have passed since the last. It marks 2.5 years since JR entered remission. Honestly, I feel confident that my child is still cancer free. And therefore, my fear about the results is less overwhelming than for previous scans. However, it doesn't take away the pain of our experiences and my fears over JR's future. He's at risk for so much as a result of the toxic chemo and radiation treatments he endured. It's best for me not to dwell on the statistics -but that doesn't make them go away. Again, I have to find a way to live with my fears.
By now, JR's anxiety over his body, medical personnel, medical settings and medical procedures of any kind (including things like receiving a band-aid or having his height measured) is evident. His fight or flight response instantly activates and it can be incredibly challenging to help him cope. JR does not want to be touched unless he fully understands the touch and feels in control of it. He does not tolerate hair washing, ear cleaning, tooth brushing, nail clipping, haircuts, or first aid treatment of any kind. Let alone actual appointments at the pediatrician or CHOP. A few weeks ago Brandon attempted to give JR his first temporary tattoo on his hand. As soon as Brandon applied pressure over the tattoo, JR burst into tears. Immediately I understood that he was having PTSD from the countless IV's he's had in his hand. When he busted his knee open at school, he refused to let anybody clean and bandage him. When they tried to persist he began to cry. Oh, how it breaks me to know what's coming tomorrow. It also makes me really really angry.
It's so therapeutic for me to write and get all of the pain out of me and onto paper...er...this webpage.. Many of you followed my blogging on Caring Bridge all the way through, so I imagine you understand how necessary this process is for me. Thanks for continuing to "listen". My hope and faith remain strong. When I make room for God and allow Him to be the center of my heart, my marriage and my family, I am fully at peace. This is a daily (oftentimes moment by moment) practice. Instead of questioning God, I work to find what God is teaching me. What I've discovered is that JR's cancer is my personal cross, and through my suffering I am led to Him. God uses suffering to grow us in our faith--my favorite metaphor is that of God refining us through the fire. For despite the pain I wrote of above, when I turn to God in trust, I am comforted and my faith is strengthened.
I'm not living a crisis anymore, where I need to rely on God every moment to get through. God was so big for me then, and my faith was the strongest it's ever been. My life isn't as extreme as it was then, and as a result I turn to God less. When scans come around I realize how broken I remain. It turns out I do still need to rely on God moment by moment. Perhaps scans serve as an opportunity to return to God, and give myself over to Him, as I did during JR's treatment year. I'd like to touch on the irony of my understanding of this -it was when I was at my most broken and lost all control over myself and my life, that I was able to live most effortlessly with God at my center. But now, no longer living in desperation, I struggle to keep God at the center of my life. It seems a bit of a catch-22, doesn't it? God is biggest when you need him most...and you need Him most when you are suffering most...so...perhaps this is the answer to the age-old question of why a good and perfect God allows suffering. Suffering draws us to God, strengthens our faith, and refines us in His image.
I ask for your prayers for John Ryan tomorrow, and peace and endurance for our family. I ask for prayers that JR remains cancer free, and that he knows in every moment of this difficult day that he is safe and loved.