With Summer moving quickly into Fall and having experienced two botched attempts to spend some time in my backyard “pool,” a vinyl blow up Bill always gets me for my late June birthday, but which proved to be more than I could handle without his help, I devised another plan to soak up some much needed Vitamin D. I drug my zero-gravity chaise from the screened porch out into the back lawn and positioned the sprinkler where it would water a parched area containing bedding plants and hanging baskets and where I could receive the benefit of a cool spray every 30 seconds or so.
My neighbor Myriam came over, pulled up a lawn chair just out of the sun and the sprinkler, and visited for 45 minutes. Rebecca stepped over from next door and had a giggling fit at the picture of me lying supine in my purple KMart Final Sale bathing suit, wet from head to toe, enjoying a cool drink and a friendly visit with Myriam as the sprinkler made it’s gentle arc. Rebecca vowed to drag out her sprinkler when she got home from her job as a teacher; I had assured her that this was an instant cure for fatigue and for stress. Both of which have plagued our little household lately. Caring for my sweet husband, when the side effects from his treatments are fresh and pile on one another, is indeed at least a 20 hour a day job.
While Bill sleeps a great deal, the pattern for his sleep means that he is awake often throughout the night, and, as this week has flown by, his cognitive abilities have begun to echo the restless tossing and turning. Yes, we try to rest or nap when he does, but that is hard when the rest of the world is awake and busy and when household chores seem to have increased with a patient in the house.
As I promised earlier, or “warned” might be a better verb here, I want to give you, my still faithful reader, a true view of what this experience is like for those of us who are watching and waiting, hoping and caring, cooking and feeding, cleaning, bathing and dressing, as well as driving or riding the hours necessary to make our way to and from the scores of doctor and treatment appointments. Fatigue and stress are constants with patient and caregivers alike.
I am extremely fortunate to have a loving family and many precious friends to help along this journey to cure and recovery. My brother was here for a week of “vacation” so he could drive us to Riverdale for Bill’s twice weekly Radiation Blasts and to Fayetteville for the first Keytruda infusion. I had developed a terrible eye infection which has made my driving dangerous, so I am extremely grateful for my “baby” brother Scoot whose real name is fittingly, James as in “Home, James!”
He became a beloved companion for Bill during the seven-day stay. The two had never spent so much one-on-one time together, their age difference (18 years) and the miles that separated us (Scoot lives in South Carolina) had prevented them from developing the bond that now grew into true Brotherly Love. Bill and Scoot shared stories about my dad, who died when my brother was only a boy of 17, while Bill had known, admired, and loved Dad for over a dozen adult years.
We laughed and reminisced as families do in happy reunion times, and even though these were certainly not happy days, Scoot seemed as determined as I to make the hours which Bill felt well enough to talk and share meals together in as pleasant and sweet as possible. Sometimes Bill just sat and listened, smiling at some foolishness or another that we recounted, sometimes he laughed with us.
Just as Scoot had to head Eastward after one full week of helping with driving and house chores, my daughter Kim was on her way West to lend us a hand for another entire week. She brought her work with her, as well as her cute and cuddly little Brussels Griffon, an old gentleman dog who has spent a great deal of time snuggled in Bill’s lap— the two snoozing away. We had no appointments this week, but the challenges presented by the after effects of the anesthesia, the radiation, and the first Keytruda treatment have been great. Our patient experiences a great deal of agitation, and his weakness has increased to the point that we cannot depend on his legs to carry him even across the room. I could not have managed without Kim’s strong arms, nor without my daughter Leslie’s steady help and that of her husband Joel’s.
Friends and neighbors have kept us well fed: like Rebecca Shriver and her entire family who brought huge portions of their delicious Parmesan Chicken to our family, and my sweet friend Ruth Gray who has owned a part of my heart for years, and who like a magician pulled an array of goodies from her gaily covered basket including pickled peaches, mixed greens and butter beans, and special corn muffins or Myriam, who added another fabulous chicken dish, plus black beans and rice, as well as her signature pastries to our larder. It is easy to see that even with the stress, anxiety, and fatigue we have all experienced during these nine weeks, we have had no shortage of food. Our refrigerator is full to the brim and we are truly grateful!
Author’s Note: As this column went to press, Bill had been transferred to Atlanta Piedmont Sunday night for further care from the team of Neuro Oncologists who did his original surgery. We ask for your continued prayers.