And We’re Off!

Yesterday I started my day with labs and an appointment with my oncologist at the Taussig Cancer Center and then headed to one of our regional hospitals for the insertion of my chest catheter with the Interventional Radiology department.

After check-in, my husband and I kissed through our masked faces and he went home to await word from the surgical team. Back I went for pre-op. With my yellow FALL RISK bracelet and my red ALLERGY bracelet donning my right wrist, I received my gown, surgical cap and matching yellow socks. I appreciate that my socks give me away as a fall risk; I like the color coding. I have a pervasive feeling of safety should I suddenly gain a moment of Herculean strength to walk unassisted as everyone would know to watch out.

My nurses put an IV in, drew a few more vials of blood and offered me a warm blanket. During our chat both nurses were astounded to learn that bone marrow transplant is used to treat MS. Much like the appointment I learned about HSCT, it’s relatively unknown even in the medical community and still quite uncommon. I was offered a warm blanket and allowed to keep my phone. After taking a few embarrassing photos and sending them to friends and family, I was wheeled to the operating room (OR).

The safety checklist and huddle

I’ve mentioned before but I’ll write it again, I like being in the know. I hate it when medical professionals talk about you as if you aren’t there over hearing what they are saying as they work on YOU. Which is why as a patient, I’m obsessed with the safety huddle.

Prior to any surgery or procedure at Cleveland Clinic, the entire OR team huddles around the patient. The surgeon led my huddle and asked me to state in my own words what was being done to me. Another member of the OR team brought the equipment being used and inserted into my body and noted that the expiration dates were in 2023 for all items. Nobody on the OR team is moving or multitasking, they are in a circle around the patient and the patient is an active participant in the conversation. Once everyone is in agreement, we moved into the OR.

On a spaceship

Admittedly, I do not have a tremendous amount of experience in ORs. This OR, with a private anti chamber, looked like a space-age, white gleaming room. In addition to the mobile ultrasound unit, it had some sort of massive radiological equipment that looked like a giant C and could be opened and closed around my chest as I lay on the table. All members of my surgical team were fully covered in the heavy radiation-protection vests over their scrubs. That was a new one for me.

Once again, the team paused to state what procedure was happening and to ensure the entire team was in agreement. Because I am a massive nerd (and proud of it) I gave two thumbs up and told my team they did an excellent job with the Universal Protocol Safety Check list and that I was extremely appreciative.

I received another warm blanket (score!) and then they performed an ultrasound of my neck to locate which side they would enter in and secure the port. I was then covered in blue sterilizing serum which the team member told me would make me look like a lovely Smurf. Then, through my IV, I was administered a veritable cocktail of antibiotics, opioids and relaxants. I was given localized numbing shots on the right side of my chest similar to when you have your wisdom teeth removed. This had a “pinch and burn” feel but was over as quickly as it began.

I was draped with surgical blue sheets and the procedure was underway. Don’t blink or you might miss it. In less than 20 minutes, I was in post op where I was offered another warm blanket and apple juice! The drugs may have been talking when I called my husband and told him to come pick me up and that the nurse would call him when he could come and pick me up. My communication skills were on point.

A note on nurses

I think nurses are angels on this planet. Don’t get me wrong, I have very nice doctors but the compassion, mind reading, anxiety-easing comfort comes from nurses.

When I was on the OR table I started to shake. When I get anxious or scared every MS symptom I have flares. My legs started shaking, my breathing got shallow and I felt like I could burst into tears at any moment. I was completely overwhelmed both by the big scary operating room and procedure I was about to undergo as well as this whole HSCT thing and what I’m about to do to my body.

The surgical nurse came to my left side, held my hand and said, “how are you doing, honey?” I did cry then and told her I was scared. She told me I was in good hands and that they were going to take the best care of me. Her awareness, tone and the fact that she touched me skin to skin made all the difference in the world. It was about this time I was administered the drug cocktail which took effect almost instantaneously. Drugs are great, but human connection is better. How can I convey to that lovely woman what her awareness and act of kindness meant to me? I’m a communications professional and I find myself without words.

That nurse saw me. She held me. She made it better. We are so lucky to have people in this world who give their compassion away freely and without question to strangers. They choose a profession where they give of themselves all day, every day. Just thinking about it makes me equal parts tired and grateful.

Recovery

I got home and promptly fell into a lovely opioid-driven sleep on my couch. It was very difficult to get comfortable because the neck muscles are sore and there’s a strange pull on the chest muscles. Following a dinner delivered by my bestie and her husband, I tried to get comfortable, drank an obscene amount of water and eventually went up to bed.

I was in pain (sort of managed with Tylenol), very wobbly and seriously unstable. My husband walked behind me to ensure I safely made it up the stairs and into bed. Sometime in the 2am hour I logged onto Amazon to purchase different bras to accommodate some sort of support as well as the catheter now on the right side of my chest.

I go back to Taussig today to learn how to care for the port that is in my chest. I look forward to when I am allowed to shower to take away the Smurf coloring on my chest, neck and arm. But, in the interim, I plan to rock the blue with pride!

Thank you to my friends, family and colleagues who checked in on me. I appreciate and love you all so much.

6 responses to “And We’re Off!”

  1. Carolyn,
    You articulate the details of your experiences so well. I am sending my family and friends to your blog, because I gloss over everything! Your description of the 7T MR is impeccable.
    Also, I hope the bras work out for you.
    Xo Erin

    Like

  2. Tearing up reading this, just how kind they were to you and what good care everyone (medical and personal to you) took of you. It takes a village sometimes, and what special villagers you have.
    We like to be independent and resilient but having that support is magic. They’re all angels x

    Liked by 1 person

  3. Carolyn, I did not know until recently what you are going through. Just know we are all rooting for you!!!

    You are in our thoughts and prayers with great hope and love. ❤️

    Liked by 1 person

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