lifesavers

amazing, the power of conversation.

At last night’s 7:30 shift change, I was introduced to Kirby, a new-to-me nurse on 16 Prentice. The outgoing nurse Carolyn introduced me as someone very dedicated to a clean diet – it seems that every day my diet has been a topic of conversation among the various nurses. People wonder how I remain so dedicated to such a strict diet – I prefer to think of it as remaining dedicated to how much better I feel when food isn’t causing inflammation in my body. As Kilby is also mindful of her diet, she was quite interested in my gluten-free, dairy-free, soy-free, legume-free, vinegar-free, yeast-free, no-added-sugar fun-free diet.

Boring, maybe. Challenging for nearly a month while in the hospital on the stem-cell therapy floor with strict precautions for a sanitary environment, absolutely!

While at the hospital, my diet has consisted of any combination of applewood smoked pulled pork, chicken breast, avocados, squash, zucchini, sweet potatoes plain or mixed with coconut and pecans, jasmine rice, red peppers, cucumbers, carrots, roasted plantain chips, pumpkin seed-cranberry-almond-chia seed bars, asian pears, bananas, honeydew melon, red grapes, applesauce with cinnamon, and blueberry-banana-almond milk smoothies.

The food you put into your body is your fuel, so I consume fuel that works for me. And the only way I’ve been so well-fueled is because my husband runs a few blocks away to Trader Joe’s or local restaurants, twice a day, to bring me something other than the options available on the hospital menu.

Because even after meeting with the hospital dietician, I can consume just seven items from the hospital menu.

As the dietician explained, “we need to keep a selection of foods that are popular with a majority of our population” so they offer personal pizzas, soups, salads, sandwiches, burgers, lasagna, meatloaf… and they only have sweet potatoes available on Fridays. While they did afford me extra portions, a double-order of cucumbers and carrots doesn’t go very far.

At 2:30 in the morning, as Kirby connected me to antibiotics and drew blood, our conversation continued as I offered my opinion and hope that a hospital, of all places, should be an environment in which patients are encouraged to consume whole, organic, healthy foods. I am very sympathetic to the challenges that other patients on 16 Prentice face with their battles against multiple-myeloma or leukemia, as their chemo regimens are very different, but they are also on 16 Prentice to receive stem cells to regenerate a new immune system.

When I hear that many cancer patients end up with complications because the chemo makes them so sick they end up staying at Prentice for months, I wonder how much of their suffering might be alleviated if the foods they could choose to consume at the hospital weren’t offered based on popularity. The tongue is a powerful muscle, but I like to believe that our brains are more so. Not everyone is game for my no-fun diet, but what better environment than a hospital to begin shifting habits? If patients only had the option of whole, organic, freshly prepared foods during their stay, sure the kitchen may not be very popular, but I wonder how many might be inspired upon discharge to keep their diet whole.

Then our conversation got real.

Because reality is that upon discharge, not everyone has access to whole, organic, fresh foods. Food that is high-quality good for you is high-quality priced. We talked about the harsh unfairness of food deserts in Chicago and poverty in Appalachia. I told her my about one of my very best friends, who served as a pediatric dentist on the mobile dental unit for the University of Kentucky and how horribly tragically often she had to extract baby teeth from toddlers due to decay and cavities. Before we got too glum, I shared with her the brilliance of Findlay Market and the nutrition classes at our wonderful Freestore Foodbank and programs like Cincinnati Cooks (that I visited for lunch when it was part of Taft High School) that shine good light in my hometown. We also talked of the importance of self care and pampering oneself, especially in fields like nursing, as so many nurses have delighted at the smell of my room, which I attribute solely to the goodness of my LUSH Sleepy hand lotion, as I apply it nearly every hour after I wash my hands. I am a self-admitted LUSH-aholic, a word I made up, because I believe in their company mission and products, and the importance of self-care, especially for individuals in the caring professions. She promised to head to Michigan Avenue and at the very least, treat herself to a demonstration of the Salted Coconut scrub and samples of whatever she fancied.

Recently I was reminiscing with friends about our weekly health lesson in elementary school when our teacher would roll in a TV and VHS player on a big cart to share with us the wonder that is Slim Goodbody and earlier in the day, I shared him with Carolyn. We both have seven-year-olds and as a nurse, I thought she might appreciate that when I was seven, I was subjected to Slim Goodbody on the weekly at school. She told other nurses at the desk about him, and promised to show more of the videos to her kids. Because although oddly enthusiastic about his role, I wonder how many kids are taught about the importance of a good diet, chewing your food well, and having a rainbow of food for your plate. Maybe it’s a Bay Village thing, but let’s be honest. Slim Goodbody is not easily forgotten.

Despite the menu, I am ever so grateful to be on 16 Prentice today.

To be under care of the most fantastic nurses that take time to engage in real conversation. To build connections with others and have this chance at life without MS. Today, is my Day +7. Seven days after Day 0, the first of five days of intense chemo, aka my Stem Cell Birthday, which was seven days after my daughter’s seventh birthday. And six months from today, on April 25th, I will turn 40.

Dr. Burt took a chance on me in May when he told me he could help me, as my MRI did not show active lesions and he knows the best outcomes for his protocol happen in true RRMS. He cautioned I was transitioning to secondary-progressive and that HSCT might not work for me. I know I have a long road of strengthening recovery ahead, and that many of the improvements I’m noticing are most attributable to the high-dose steroids I’m dosing down from, but already I notice significant differences: I have balance when I stand upright and no longer feel as though my head is wavering side to side; inflammation in my body is tremendously reduced; I sweat for the first time in years; I can willingly move the toes on my left foot; for the first time since 2009, I can feel my fingertips; I can stand on tiptoes without falling over; I can bend and rotate both ankles; I can lift the toes of both feet upward from the floor; and most importantly, my left knee bends when I walk and practice stairs.

During this morning’s rounds, I told Dr. Burt that I am grateful for his dedication to this protocol, his research, and his patients, because “you are saving our lives!” His humble response was, “It’s patients like you that keep me going.”

be inspired. eat well. be well.

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