If I back out of my CART-T procedure now, I will owe the Cancer Center $373,000.00!
Not wanting to sell my home or sacrifice this potentially life-saving procedure, I arrived at the 5th floor Immunotherapy unit at 0830 on Wednesday morning. I was escorted to bed #3 where 2 nurses immediately set up their field for IV insertions for leukapheresis--the process which separates T-cells from my blood, to be re-engineered for an anticipated cancer remission.
A large bore, 18 gauge, steel needle was inserted into my left antecubital (the crease where the arm bends at the elbow) that would be pulling blood from my body and into the cell separator machine. I was to keep that arm perfectly still for the entire length of the procedure so I asked for an arm board to affix my arm to it. I didn't want to jeopardize anything by inadvertently using it.
A smaller needle was placed into my right forearm, making my arm and hand easily accessible for use. The blood that had already been separated would return to my body through this IV.
Once the setup was complete, and various double and triple checks were done, the machine was started at 0920. It quickly became a cadence of click, click with the tubing being squeezed to encourage blood flow, much like the action of peristalsis in the intestines, or contractions as the uterus pushes a baby out. The noise eventually faded into the backdrop of the chatter and other noises in the room. I didn't feel anything, but because the IV lines were draped across my body, I could feel a slight vibration of blood running through the tubes.
I had already been warned that I may begin to feel a "buzz" in my body that would indicate low calcium, a perfectly normal reaction. I'm not sure how long my blood had been exiting and entering my veins, but at some point I felt an oh, so subtle buzzing in my left thigh. I mentioned it to the nurses who rationalized that I was getting low on calcium, but I wasn't convinced. The buzz was so subtle that had I not been waiting for it, I wouldn't have noticed it. Instead, I thought maybe it was the hum of the clicks and clacks of the machine vibrating through the IV lines that were splayed across my lap.
But then my stomach started to rumble, along with my left foot, so I reported it again, this time believing that the nurses were probably right. Five minutes later, my bottom lip began to quiver, confirming what we all already knew. After calcium was added to my IV line, my body stopped buzzing for the rest of the procedure. Wild!
Surprisingly, the process went quickly. Between engaging with the nurses who kept coming in and out of my cubicle, helping where they could, to checking Facebook, eating, and doing a crossword puzzle with my friend, Jack, the day was easy and uneventful.
Pain began in my left arm about halfway through, probably from tensing up my muscles in an effort to guard my precious IV. It wouldn't relent, no matter how I tried to relax my shoulder, arm, and mind. I was given several heat packs and a heating pad to alleviate the pain, and it helped a bit, but by the end of the procedure, my muscles were feeling as if I'd just done a thousand pull-ups.
Nearly four hours later, at 1:10, the machine sounded its "end" alarm with a little song and in a flurry of activity, my T-cells were packaged for a flight to California, while my IV's were removed. By then, my bladder had been screaming at me to be emptied so I slowly made my way off the bed and into the nearby bathroom, just in the nick of time! I wasn't able to use the bathroom earlier since the machine couldn't fit into the stall, and I wasn't about to subject myself to the embarrassment of using a commode in the middle of my curtained cubby.
I returned to my cubicle and after a quick signature, I was released. No recovery? No snacks to make sure I was okay?
Nope. It felt strange leaving the nurses behind who were still making final preparations for my blood to be transported. I felt like I was sneaking out behind their backs, but by the time we'd exited the unit, no one came to get us, so I was home-free.
Feeling slightly tired the next day, I still resumed my normal routine. It was typical that my labs dipped a bit, but overall I felt well, and continue to feel peppy and energetic three days later.
Because I'm in a study, there are frequent adjustments to my schedule and appointments, so when my follow-up visit to the clinic revealed a new procedure for next week, I questioned it.
Why do I need another biopsy? I've had two already and we already know what this cancer is.
It's just a quick procedure using an ultrasound, my nurse informed me.
Uh, no, it wasn't. Both of my biopsies were done under general anesthesia and I am not willing to do that again, not now at this critical time.
As a study participant, I get the final say in what I will and will not participate in, and while I'm an easy patient who is more than willing to help Research, I had to put my foot down for this one. My body has gone through too much in recent months and within the month it will endure a potentially difficult recovery.
My nurse agreed. Okay, I'll make sure it's off the schedule, she promised.
It pays to be a medical professional who knows what's acceptable or not, and it also pays to self-advocate. Fortunately, I saved myself another surgery by speaking up.
My T-cells will return from California all jazzed-up around February 1st, so I will have to relocate near the hospital before then. I will undergo 3 days of light chemo (much less than I've already had in the past), with two days of rest. I will then be admitted into the hospital a few days later for at least 7 days. The need to remain flexible is critical as the timing of processes can change by a day or two on either side.
I'm ready. I'm anxious. And I trust that all will continue to be well.
I'm even starting to get excited that, perhaps, this really will be my miracle cure.
Godspeed to me.