The Life Changing Moment
- Brenda Smith
- 14 hours ago
- 5 min read
May 19th - Day Zero
Today is the day! Starting at 4am with more vials of blood drawn and sent to the lab, it's come down to the ultimate do or die. With my plumbing still clogged, I opted for a cornucopia of elixirs instead of breakfast this morning. From the view out of my hospital window, the day dawned fair and sunny. Those are the snowcapped Rockies with the profile of downtown Denver in the distance. Monica arrived early to be here before the day's activities got underway.
Dr. Piquet came in to perform her final neurological checks and to give a green light to our countdown. Then Timber arrived to record all the data needed for the trial sponsor. At close to 10 am, my Physical Therapist Rob (affectionately known as Darth) appeared to take me for my final walking test before the infusion. He wheeled me to part of the hospital where a glass walkway bridged two towers of the hospital with gorgeous 11th floor views on both sides.
He wanted to know what he needed to do to raise his status to Jedi. I told him when I could walk normally again, I'd call him Obi-Wan Kenobi. We started with the unassisted 25 foot walk, which I did with no problem, then progressed to the dreaded 6-minute walk with my cane. From the last time I did the test, I'd learned that slow and steady worked best. So, after Rob positioned the second cone an impossibly far distance down the hallway, I stood and started my stroll. Inspired by the beauty outside the floor to ceiling glass windows on either side of me, I plodded along as Rob called out each minute that elapsed.
I won't lie. That walk still challenged me, but I still had a tiny bit of energy left when he started his 15 second countdown. I calculated that if I picked up my pace when he got to five, I could make it back to the starting cone. Timber stood watching me approach and could see the wheels turning in my brain. At Rob's count of five, I took off for the cone as fast as I could go (think fast shuffle). Neither Rob nor Monica knew what was happening. They thought I had stumbled. Rob claimed his heart stopped for a second because I'd gotten beyond his reach. But Timber smiled, knowing I wanted the feeling of crashing through the tape at the end of a marathon. I had to promise Rob I would never do that to him again.
Back in my room, Monica and I waited for the arrival of my new T cells. Ally, my nurse, connected a 1,000ml bag of saline to my port two hours before the infusion to ensure I'd stay hydrated. Thirty minutes before my infusion, I got a dose of IV Benadryl, 650 mg of Tylenol tablets and a shot in my belly of fragmin to prevent blood clots. The Benadryl immediately had me drifting off to La La Land, but I needed to stay present for every moment of the procedure. Soon after, Dr. Piquet and Timber arrived to preside over the big moment. Dr Piquet had a surprise for me-a cap she's giving to her patients in this trial. I immediately put it on.
A representative of Clinimmune entered my room with a cart containing the cooler used to transport the ultra-cooled packet of T cells. He donned a pair of super insulated blue gloves before he carefully removed a metal case from the cooler. Wisps of white from the dry ice in the cooler escaped and vanished. He opened the case and removed the packet of frozen cells.
As soon as he removed the plastic packet, the liquid quickly thawed enough for Ally to take over and hang the thin bag containing 100,000,000 new T cells from an IV pole. That number of viable cells exceeded the minimum required for the treatment. Yay! She connected it to my port line.
I had the team gather around my bed as Ally spiked the bag of cells so the T cells could flow into my body. Although Dr. Piquet had described the actual moment of infusion as anticlimactic, I felt the thrill of my life.
It took only 20 minutes for the bag to empty. Afterward, Dr Piquet and Timber left to attend to another patient. I would never be the same again. Now, it would take days for my new cells to complete their mission. My body might not easily recognize its own modified cells, so I will be hospitalized for at least the next ten days. Monica left to get dinner at around 4 pm and just missed the surprise birthday celebration that the Cell Therapy Unit staff had planned for me. A dozen of the staff, led by Ally, entered my room singing Happy Birthday. She handed me an adorable mini bundt cake and a birthday card signed by all of them. Their kindness made me feel like a princess!
They do this celebration for every patient receiving CAR Tcells as a recognition of their rebirth into a new life free of the diseases that diminished their previous lives.
Karma is all around us if we are open to it, I've learned. My dear friend Linda invited me to spend this past Christmas with her family in their cottage at Penobscot Shores. Her daughter, unfortunately, wasn't able to be with us, but in the spirit of the season, she had sent each of us a small gift of a single word on a 6" by 3" piece of paper. The laminated paper had been gift wrapped so the buyer wouldn't know what word they'd chosen. But the universe meant the word to be of great importance in the person's life who received it. My word puzzled me. BIRTH. I wondered in that moment, "What could birth possibly have to do with my life?" Now I know.
May 20th - Day 1
Just a quick update while I'm feeling great and tremendously grateful. My plumbing is back to normal. Yay! My cumulative count on vials of blood drawn stands at 132. All my lab work looks wonderful, according to Dr Piquet, who paid me a brief visit. After sneaking into the hospital at 4:30 am to check on me, Monica spent most of the day with friends in Littleton and doing our laundry from last week. We had a great visit this afternoon.
Though I feel great today, Dr Piquet has warned that days 3-5 will be rough as my new cells settle back into my body. So you may not hear much from me for a while. But I would love to hear from you via emails, texts or cards. My address is Brenda Smith, Room 11331, c/o University of Colorado Hospital, 12605 E 16th Ave, Aurora, CO 80045.
Thank you so much for your messages of encouragement and well wishes. I feel they are giving me strength to get through this complicated trial. I'm still staying positive and hopeful.
Love,
Brenda