some things you just need to take laying down.
internal jugular vascular catheter; triple lumen picc line placement; two hour dose of cytoxan followed by a ten hour dose of rATG each day for four days followed by a fifth day ten hour dose of rATG; and with every respect for native cultures, the vision quest experience that is HSCT.
during my 2:30 blood draw Wednesday morning, conversation with my PCT focused on the many patients on 16 Prentice who don’t pay attention to the nurses who tell them not to worry; the patients who have the hardest time are too distracted by the negative aspects of the experience, which end up becoming their reality. She said, “people don’t realize that while you’re on 16 Prentice, you have 15 days to find yourself, reflect on where you are in life, and all the possibility of where you’re headed!” I agreed and said, “people also have a hard time remembering that all you can control is your reaction to what is happening in the present moment.”
Six days ago, I started receiving neupogen shots on the daily to boost the generation of stem cells from my bone marrow and complement the work of my 8.75 million stem cells that returned on 10/18. Neupogen comes with pretty significant bone pain that the team prescribes Norco for, but I have no interest in hydrocodone or its side effects. So I stick with Tylenol and move as much as possible to get everything moving. Sure enough, Aunt Flo graced me with her presence. So kind of her to join me.
Admittedly, I have a very high tolerance for pain; a few years ago I was hustling down concrete stairs in a parking garage, late for a meeting, leftover lunch in one hand, a drink cup in the other. The arch of my foot hit the edge of the step, rolled under me and wedged itself into a crack between the stair and the wall. I continued to fall down four stairs and when I landed, I heard a snap. I sat up, reached out to manually dislodge my foot from the wedge, set it on the ground, stood up, and noticed my drink cup wedged between the stair railing and the wall. ‘How did that happen?’ I thought, and when I noticed the split in the cup, I told myself, ‘That must have been the snap I heard.’
My foot hurt, but adrenaline kicked in and I hobbled down the remaining flight of stairs, then 100 yards into my office before I sat down. “What happened, are you okay?!” everyone asked… long story short, the x-ray four hours later showed that a tendon in my foot sliced off a chunk of my fifth metatarsal “like a butter knife,” said the doctor.
I share this story not as a bragging point, rather to acknowledge that everyone does the best they know to; and not everyone is able to manage pain (or diet) as well as I do. Let’s be honest – the struggle is real. And rest assured, very little about the HSCT process has been easy, but I do believe my outlook, diet, and mindfulness have contributed greatly to my success.
During each of the past six nights I felt as though my bed were a sweat lodge. I marveled the other day at the sensation of perspiration, yet the amount of sweat pouring from my body seemed excessive. Apparently other MS patients report similar experiences, and when I asked Dr. Burt about the profuse amounts of sweat pouring from my body – the bed (which of course, is plastic) was soaked, I was soaked, my nightgown was soaked – he let me know it’s a sign of engraftment. Eureka! No longer a concern – I’ll be very glad to continue to sweat if it means my stem cells are becoming white cells. I told him that each night, the sweat, the dreams, and time spent reflecting had been so cleansing and purifying, and that I was grateful for the chance he took on me. He said, “well, you’re doing great!” and I said, “I really believe it has a lot to do with my diet and mindfulness and I was talking with a nurse about how so many patients struggle, despite their assurances. I wish more people would embrace the trust in professionals to do their jobs well and relinquish control over everything but their reaction to what is.” In classic Dr. Burt fashion, his response was, “Well, there is an old saying, that you can lead a horse to water, but you can’t make it drink.”
Wednesday night after sleeping a good five hours, I awoke to relieve my bladder, checked the clock and noticed it was 2:25. Perfect. My nurse came in to hook up the 2:30 am dose of antibiotics that runs for 30 minutes. I took a sip of water, poured my cheerios into a styrofoam cup to offer my stomach something with the meds, and started to scroll FB. I stumbled upon this amazing video promoting the World’s Best Belayer and after being completely impressed and inspired to work hard in my upcoming physical therapy, I reflected on all the time I have spent on belay (my harness and equipment was nowhere near as sophisticated, by the way). Grounded. Aware. Tuned in to the present moment.
During my senior year of high school and early years of college, the Red River Gorge in Daniel Boone National Forest was my playground. My boyfriend was a rock climber and we spent every weekend possible climbing, hiking, and camping. Mainly with him on the rock at Phantasia, Roadside Crag or The Zoo, working on favorites like Ro Shampo or Creature Feature. Occasionally we’d find a 5.6 or 5.7 for me to climb and with enough practice we were off to visit his brother in Utah to climb in Little and Big Cottonwood Canyons. Another year we were off to City of Rocks in Idaho before ducking into Yellowstone where we camped without a permit. We boogied from there up to the Wind River Range in Wyoming so they could climb a multi-pitch route, hit the Tetons on the way home and other spots I don’t remember.
It occurred to me that all of my time spent climbing and on belay established the foundation of my mindfulness practice, and I am ever grateful. I always said that climbing was the most challenging sport because you have to be so balanced both physically and mentally; aware of your surroundings and the impact of your actions on your survival and others; keen to your own limitations to know when to push and when back off; attuned to your body to know when to pause, breathe, and prevent lactic acid build up. Disciplined, patient, calculated, and mindful. Even though I likely contracted Lyme Disease during my years in the Red, I am ever grateful to have established a foundation of mindfulness at such a young age, in so many adventures.
It seems as though HSCT helped me to come full circle with the journey of my dis-ease, exiting with stronger tools to continue developing a new blueprint. After a significant amount of reflection, purifying perspiration, clean eating, and rest, the rebuild of my new immune system is finally on the upswing. Thursday I learned that my white cell count finally reached 0.1, which means they were no longer too low to count. Friday morning my white cell count jumped to 0.2 overnight and my neutrophils finally showed up for a 0.1 count as well. Friday afternoon, my white cell count was at 0.4 and it needed to be closer 1 before discharge. So, my night nurse decided we’d allow my body more rest during the night and draw blood at 5 rather than 2:30, hoping the extra time might allow more white cells to show up.
She came in for shift change at 7:30 with Lauren, leaned against the end of my bed and said, “You want to guess what your white count is?” My mind paused, found hope for at least 0.7 but I replied, “no, I don’t want to guess” as I didn’t want to presume that my 0.4 had at least doubled. She smiled big and said, “Your white count is 1.1!”
Immediately a tear ran down my cheek and I exclaimed, “Thank you, so much, for helping me hack the count!” By 8:15 Dr. Burt arrived to shower me with praise, “I’m proud of you!” and a big hug to officially discharge me. All I could muster to say was, “thank you for believing in me!”
Cheers to solid foundations, mindful presence, and new beginnings. As Dr. Burt also said this morning, “there’s no place like home!”
be kind. be mindful. be well.
3 Comments Add yours
Jen, thank you so much for sharing this.
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A high tolerance for pain is quite the understatement. I just can’t believe how much you have been through. You’re the strongest person that I know and I am in all of this process. Sending you a ton of hugs, love, and positive energy. Keep moving forward love.
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So very proud of you my darling girl-happy homecoming! Please feel free to call on me for support such as; laundry, wiping down often touched surfaces, trash removal, dog brushing outside, child care, and any other assorted chores I can help with. Love you!