I work for Cleveland Clinic. I receive care at Cleveland Clinic. Never has this convergence been more at the forefront of my life than throughout the bone marrow transplant process. And trust me, the laws are in place to protect my health/personal information, like separation of church and state. But with this process, I was very open and tore down every protective wall and embraced my work and healthcare colliding.
When you’re loud and proud
I told my bosses. I told my entire team. I told executive leaders I support. I wanted people to know what was going on with me and also what is happening at Cleveland Clinic as we expand HSCT. Some of the people I told said, “Wait, what is this? I need to read up on it before we chat next!” It’s still new. I can’t stress my #10 status enough. We are building this plane as we fly it. I’m a human experiment.
I shared this blog with my neurologist and transplant nurse, who in turn shared with the entire MS team, in the hopes that my learning and struggles would help others following in my path at Cleveland Clinic. Long story short, I’m writing a blog, it’s out there, it’s public — even at work.
There is vulnerability in being “out” and there is fear associated with claiming my disability and illness. But more than that, there is constant, background support that buoys you in unexpected ways. There are laws, like FMLA and short term disability, but support from work is more than those legal requirements. It’s quiet and personal.
When your team supports you
My colleagues held me up, and continue to from afar. They gave words of encouragement when I explained the procedure and what the upcoming months would entail. They TEAMS chatted me how great I looked when I finally had the courage to sign on camera with my bald head. They sent flowers and coloring books. They texted me throughout my hospital stay to let me know I was in their thoughts. They brought me Starbucks on the day before I was released from the hospital. They read this blog and share feedback. (I work with brilliant writers and communicators so their feedback is hard-won indeed). I benefited from their support because I had the courage to open up and let them in. The reward was well worth the risk.
When world renowned doctors become friends
When I first started at Cleveland Clinic, I handled PR and media for the cancer center. Talk about coming full circle! I had worked with, ghost written for, traveled with, dined with and supported our cancer doctors. I understood (as much as a non-patient can) how great the mechanics of the cancer center were. I worked with different specialties and had the privilege to help tell the story of some of our world-renowned experts.
When my neurologist first mentioned “bone marrow transplant” I called my friend Brian, who happens to be THE bone marrow transplant doctor, badass, expert. I ugly cried and asked him to talk to me about the science, the process, the chemo and what he knew about its application for MS. I remember that call being calming. I felt reassured in both the science and the safety. He was the person I trusted and who talked to me about my fear. He raved about the team and the nurses and the bone marrow transplant unit. He also said, “You’re a fighter Carolyn and you will fight like hell.”
On my first day of chemotherapy with the monster dose of Cytoxan, another doctor turned colleague turned friend, Jame, stopped by my infusion room. Jame has a calming aura. You can’t be around him and not want to hug him. He elicits joy without even trying. I was sick, plagued by the chemo, scared and teary and he sat in front of me holding one of my hands in both of his as he gently stroked my wrist. He told me I was strong. He told me I would get through this. He told me he was there with me.
My days in the hospital blur together. I forget a lot of what happened, sort of like an amnesiac but both Brian and Jame visited me while I was in-patient. I remember the light they brought with them when they came in the room. Instant joy. Instant energy boost. Instant reassurance. These brilliant medical experts were part of my care team, always making sure I was safe. How can I describe that as anything but lucky? How can I convey what their visits and hugs meant in my darkest hour?
When you understand medical operations
One of the areas I support at Cleveland Clinic is medical operations. I’ve learned over the last few years how a hospital is supposed to run. Their are millions of puzzle pieces that are constantly moving to make medical care possible. I know that when it’s going well, the patient never knows. Even in the hospital I couldn’t turn that part of my brain off. I knew the players behind the scenes and tried to thank every person, every time from environmental services to food delivery, from pharmacy to physical therapy.
I’m in awe of modern medicine and expert care and I love that I know what goes into it behind the scenes. It makes me all the more grateful as the patient.
When you appreciate your care team
The recent season of The Marvelous Mrs. Maisel on Amazon has Midge giving a speech about nurses. She eloquently talks about the fact that nurses stay — they see and do it all. She references doctors and their infrequent and short-lived visits and the juxtaposition of the two medical professions. The speech is apropos. Don’t get me wrong, I need (and appreciate) the entire care team but there is a special place in heaven for nurses.
The men and women who cared for me are angels on this earth. The nurses held me when I couldn’t stand. They cleaned up after me when my body lost control over anything and everything. They called emergency protocols without hesitation the moment I squeaked out, “I can’t breathe.” They watched medications, fetched me apple juice, refilled my water bottle, changed my sheets, changed my hospital gown, and always, always had more to give.
Where does their endless compassion come from? How can they room after room, day after day, take care of people at their worst and provide hope and comfort? How do we thank them? We ordered pizza for everyone on the unit on my transplant day but that hardly seems enough however marvelous carbs are.
When you’re just grateful
This post is a bit all over the place but I’m filled with so much gratitude for my employer, my colleagues and the incredible medical system that is Cleveland Clinic. I have a lot of time to sit and reflect right now. The past month seems a blur but the overwhelming feeling is still hope and possibility.
My hope is made possible because of hard work, clinical care paths, patient safety and superb patient care happening every day at my hospital and because of my brilliant colleagues and friends.
One response to “When Work & Life Collide”
Your blogs (including those written by your village 😃) always make me teary, happy proud tears…. you got this, it aint got you x