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.
Prayers, prayers and more prayers are sent your way. God bless you and hold you in the palm of His Hands.
ReplyDeleteOh dear sweetheart and your knight. We send our Neverending love and prayers.
ReplyDeleteSending ALL my love, strength and peace to you and Mark.
ReplyDeleteSending you all the love and care for you and your sweet husband.
ReplyDeleteSending you so so much love and prayers. Keep pushing through, you have beaten 100% of your worst days ❤️
ReplyDeleteMany prayers for the both of you.
ReplyDeleteSending prayers for healing for you and prayers for continued strength for Mark. So many people admire you for the woman you are, the amazing things you’ve done with Breathe Bravely and for the voice you give to all living with CF.
ReplyDeleteYour writings are beautiful. They bring me peace and a deeper love for God. Mark is your Angel. You are so lucky to have someone in your life that would absolutely do anything for you. What a comfort to have knowing you are never alone. I too have a husband who has always been by my side. I pray for you to be able to continue your life with Mark for a long time. Julie is my niece. I have always read your posts and they have always inspired me.
ReplyDeleteAshley and Mark …I wish I had the words to help you see the inspiration that you are to many of us! Sending love and prayers that you continue to heal and recover.
ReplyDeleteMany prayers for you Ashley and for Mark; you both are the bravest people on earth!
ReplyDeleteAshley, thank you for sharing your most difficult of days with us so that we can hold you and Mark in specific prayer. Your love for each other is beautiful. Please know that the Schramms send their love always and we are praying for you. ♥️ Jason, Suzy, Elijah, and Benny
ReplyDeleteOh sweetness, God bless you. And amazing Mark... not all heroes wear capes. I wish I had something profound I could say, but the only words I have are that you are loved, unconditionally. Even if you don't recognize yourself in the mirror or in the life around you. The spark that is you, your inner light, still shines as bright as it ever did. And it always will. Love you immensely, sweet soul sister.
ReplyDeleteWords are hard to find, but intense love and prayers are always there. Love to you and Markđź’•
ReplyDeleteAshley & Mark, while these words are so difficult to read, they do offer such good insight into how you are living right now. We’re grateful to be reading them at all. We care deeply for you and are so thankful for the time you spent with Allie all those many years ago. I still share BreatheBravely with people in conversation, because it’s just such an awesome mission. Such a beautiful way to care for others and help them to Sing! We pray the Holy Spirit will fill every place you need filled today with His Peace. We’re thankful for You!
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