Reflected in the Hard Truth

As I look around this hospital room there are reminders of a life I wish weren’t a reality. Lining the wall are my suitcases which have rolled across these cold vinyl tiled hospital floors more than any exotic locations. There’s a sweet vase of flowers a dear friend delivered. The tiny blooms a much needed reminder of the simple beauties still alive and thriving in my world. A collection of water glasses litters my little side table. My therapy VEST, IV pole, Oxygen tank, and call button all within reach. The sum of my life can be seen in the reflection cast back at me from my room’s bay windows.

The radius of my life doesn’t span too far these days. This body? One I don’t recognize nor feel home in. But, it’s mine and it’s currently the only one I’ve got supporting me. It’s a disconcerting devastation when the person in your mind does not match the person in the mirror. Who is that girl? I think she’s supposed to be me, but this life is so unrecognizable in so many ways. One thing is familiar, however, the sting of its truth.

Three weeks ago, on January 16th I underwent a major surgery to remove my cancerous pancreatic tumor called a “Whipple”. This invasive ten-hour surgery removed the cancerous part of my pancreas, bile duct, first part of the small intestine, gallbladder, and several dozen lymph nodes. Thanks to my incredible surgeon, Dr. Ankeny, the surgery was deemed a complete success. But the surgery itself was only part of the challenge on this body. Recovery was going to be long and arduous. It was bound to test my stamina, patience, and persistence. It was bound to test the tenacity of my inner hope. 

I lay my head back in the shower and fold my arms across my stomach to brace my 10+ inch incision as Mark washes my dirty hospital hair. I can’t hold back the tears any longer as he gently washes the suds from my shedding locks. I see myself reflected in his eyes and I am overcome with so many emotions: sorrow, disbelief, gratitude, and a deep visceral love. What did I ever do to deserve this person who seemingly loves me no matter what? No matter the truth of who I am. No matter the circumstance. During my hospital stay post surgery, Mark never left my side. He was my shield and my protector. He also was the voice of reason to my maybe more than stubborn mind. If I would so much as flinch he was there to grab my hand and help me to my feet. He dried my tears and picked out my clothes. He encouraged me while being honest. 

Two weeks after surgery I was discharged to continue recovery at home. Home sweet home. Our home. My happy place. I felt ready to go home knowing Mark would be with me every breath of the way. As happy as I was to go home, I also knew it was going to be so hard.

Home was indeed hard, but wonderful. My breathing seemingly continued to get worse as I couldn’t walk across the room without becoming severely short of breath even on constant Oxygen. I wouldn’t be home two days before the trepidation in Mark’s voice and worry in his eyes told me we needed to go back to the hospital. So, those familiar suitcases were repacked and the 4+ hour trip was made to the ER at UofM where I’d sit for 76 hours before being able to get a bed on my usual 7B floor. (I was well looked after in the ER as I waited for a bed) Again, Mark never left my side nor ever made me feel like a burden or inconvenience. The first night in the ER he forbid to get a hotel room for himself knowing I was unsettled in the ED. I’d so much as flinch and he was right next to me asking what I needed or where I needed to go. When providers would come in and I’d be at a loss for words, he’d speak up and speak truth to compassion - giving an honest, and I mean honest, recount reflected in how I was truly doing. It wasn’t well. Me and my world suddenly feeling so small and obsolete. I didn’t recognize this person nor this life. It wasn’t until I looked beside me that I could remember who I was. It’s in Mark’s love I could recognize any part of myself or this life.

After being on IV antibiotics for 8+ weeks, we were at a loss as to why my lungs continued to fail me. In those eight weeks I became in need of wearing supplemental Oxygen. First, just for exertion as my O2 saturation would fall into the 70s. Now, I am needing it all the time. It doesn’t matter how much my mind tries to will my saturations to be normal, this body seems emboldened by its liberties and stealing my sense of autonomy. This body is not my own, nor do I want to recognize this life as such.

The ER was filled with a multitude of usual tests, questions, and outcomes. But the latest CT scan found an abscess in my lung. At least there was an explanation for the immense pain, feeling as if I was starving for air, and the exhaustion. This cavernous pocket embedded within my lung could be due to months of immunosuppression thanks to chemo, cystic fibrosis and the ever-present bacteria that call my lungs home, fungus, or a new bug that found its way into my lungs that was hitting them hard. It doesn’t matter how or what, it only matters if we can stop it from growing and get the infection under control. After another week of IV therapies we were hoping to see the abscess shrink in size. Sadly it instead grew, leaving us all at a loss with what direction to take next. 

We have chosen a new treatment plan with the great hope that this takes care of this lung abscess. All we can do is simply trust and have patience, all while still recovering from the major surgery I had only three weeks ago. But, I get to go home this week. Home to a place I can find some semblance of myself and this life.

I can’t think about it all too long or I might lose myself to it. It can be difficult to look at the future when it’s one you’re not sure that you want to recognize. So instead, I look to the truth of now and simply what is. I look to those who stand beside me. To Mark who stands with me, and at times, for me. In my reflection I see glimpses of myself and the person I will forever be, regardless of what’s happening to me. I choose to see the love that embodies this life and the gift it still is. It may hurt to look forward but I forbid to look back. I look only to today with a hope for tomorrow. A place where there is no space for fear. Only space for grateful love reflected in the hard truth.

Love to you all.