Healing With Love
As I walked into Cornell hospital Tuesday so many emotions came rushing back - in total between myself and my son we’ve spent nearly 75 nights in this hospital and way too many appointments and ER trips to count. In many ways it’s oddly comforting to walk in somewhere so familiar even if it is a hospital. I was arriving for pre-surgical testing for my procedure I would have Thursday. Preparing for the surgery is no small feat. In addition to the surgeon it required input from two mast cell physicians and my hematologist each weighing in on what needed to happen to keep me safe.
Thankfully two of the most amazing nurses who I have known for years took charge of making sure I was taken seriously - that people read the pages of notes and instructions from my other physicians and understood how critical it was to be creative and follow instructions to prevent a major reaction.
Obviously I was not excited to do the procedure but I also knew it had to happen. When the surgeon called me 12 hours before my arrival time saying they can’t find the preferred tubing threatening to cancel my procedure without my mast cell physicians weighing in, I felt it. I was a liability. So many times because we are rare physicians don’t want to come near us. Afraid of what will happen if they make me react and so they prefer to not treat at all.
I was immediately taken back to the final months of my Mom’s life when the specialists who needed to care for her beyond our mast cell physician said no. Too afraid to make a move and so she was forced to painfully die waiting - hoping someone would step up. But no one did.
Nothing like a little PTSD to get your adrenaline going. I spent 5 hours the night before my surgery making sure doctors connected and the surgeon was comfortable moving forward. Fighting to make sure I received care that I needed and knew I could handle. Knowing as my anemia plummeted time was of the essence never knowing how much my body could withstand before it too would give out waiting.
Thankfully, it happened. And the team was creative and careful and very supportive. Of course my one night admission became two and it has not been an easy few days - fighting nagging pain and discomfort, medication trials and asking more of my body than I have in a long time while also facing my biggest fear of being mostly alone in a hospital thanks to this pandemic.
I always used to have my husband and Mom with me for every other major medical event. Now I could have neither. Thankfully, two of my dearest friends were with me part of each day and my Mother in law could bring me home. And my many friends and family stayed in close touch each day. While there were still impossibly hard moments to face alone - when I missed my usual advocates, I also felt never ending love and support from family, friends, physicians and nurses. I know it is the love and care that they poured on me these last few days that has given me the strength and courage to get through this.
So for now, I sit in my bed at home, still in a lot of pain and knowing the next few days will not be easy and there may be some extra complications along the way. I know my body and I will further heal in time and I will give it the space it needs to do so. But tonight I am most grateful to once again be reminded that I will never have to fight my battles alone and for that I say simply, thank you.
