As we get older, the half birthday isn’t quite as big a deal as it is when you’re, say, four and a half. We’re not quite as eager to encroach on that next milestone of life once we get into the double digits. However, today is special. Today is my Dad’s six month “new birthday.”
My last birthday went by with little fanfare. I spent it with my Dad in a doctor’s office. I watched him nap as I quietly sat in a chair crocheting and watching something on History to pass the time. That was the best day ever. For my birthday, Dad received his final chemo treatment. It is designed to kill every bad and good white blood cell in his body. It obliterated his immune system. Two days later, on February 24, time started over for him. He received a stem cell transplant of his own white blood cells that were harvested a month earlier. The catalyst for this event: multiple myeloma.
I could see his nervousness on that day. For someone that is sick, there’s always the lingering thought of “what if this doesn’t work?” To elicit a laugh as he waited patiently, I teased that the hallway outside his room looked like a scene from a sic-fi flick. A round freezer opened with a hiss. A cloud of cold air flowed from the top and rolled over the sides. The temperature on the freezer read -162 degrees. A technician with bulky gloves extracted a small IV bag. His stem cells thawed in a temperature controlled warm water bath, once removed from the cryogenic freezer. I took pictures of the whole process. The months of preparation and treatments came down to two petite IV bags that took less than fifteen minutes to deliver in total.
Today, six months have passed since he received his own stems cells. The doubt that lingers is eased with time. Though the last six months passed in the blink of an eye for me, I suspect there were times that it seemed to crawl for my dad. Time had to pass for his immune system to recover from that final chemo treatment. I see my parents each week as I Skype with them. His color improving, his familiar gait returning as he rebuilds muscle. Dad has always had projects around the house and at six months, he’s not only working full time, he’s back to light yard work and oil changes on the car. He’s already planning fall gardening projects. He’s tackling clock repairs on his hobby list.
What was once a long, difficult experience, was quite unique. In the early days of stem cell transplants, patients were kept in the hospital for a month or more in ISOLATION. However, we stayed at a place called Hope Lodge in Nashville. It is just one of the many good things that the American Cancer Society does with the donations they receive. The rooms are very similar to that of a hotel or motel. Each floor has a laundry room. There is also an exercise room, two living rooms, a library and a chapel on the upper floors. The main floor has a lobby with a smile at the front desk. Beyond that, there is a dining room and a kitchen with four cooking stations. Through the kitchen is storage for food and medicine. Each room had their own pantry, refrigerator and freezer space. Every person that is a guest is responsible for cleaning up after themselves. There are no maids, just a community of residents. There is even a shuttle service for doctors visits, if needed. Though our reasons for being there were not ideal, I think most knew how lucky we were to have a room at Hope Lodge.
Most people that stay at Hope Lodge are spouses. There were two reasons that I stayed with Dad instead of my mom. First, Mom is an administrative assistant in an assisted living facility. She works in an environment where there is increased exposure to cold and flu. Any sort of exposure could set a patient back in their recovery process. Second, as luck would have it, he had a daughter that was traveling instead of working. I clearly had some free time. My parents spent over a month apart because recovery was top priority.
The range of emotions that someone experiences when considering the success of a medical treatment can be very frustrating. We have only some indication of how slow or fast our body should respond to a particular therapy. Dad referred to our time at Hope Lodge as the “hurry up and wait” portion of his therapy. And wait we did. We were there for one month. Part of our time was spent a few minutes down the road at the Sarah Cannon Cancer Center, the rest was spent at the Lodge. There are about forty rooms at Hope Lodge Nashville. Half the people you meet will be an outpatient at a cancer treatment center in the area. Despite the even split of caregivers to patients, most of the time, when you look around a room, it’s typically nothing but smiles.
The support that a patient and caregiver receives at a place like Hope Lodge is invaluable. Patients do compare notes and there is an insane amount of medical terminology tossed around. It’s important that they have an outlet to discuss what’s happening to them. Despite present circumstances, we are all unique individuals not caregivers or patients. We have hobbies and lives and stories to tell. For those that are there for treatment, it is a brand new group of people that have never heard their stories or might share similar interests. It’s a chance to think about something other than doctors and medicine. It’s paths that wouldn’t have crossed for any other reason, but we’re glad they did.
Dad and I watched much less TV than one might expect. The time passed quickly. We went for walks in the neighborhood. He napped a little every day. I cooked so many fattening meals full of butter and cheese followed by ice cream and cookies to keep weight on him. I was TICKED when I realized I was gaining weight and he was still loosing it. Then there were the hours of conversations with other guests at the Lodge. One of my favorite gals to spend time with was there with her husband. Georgia and I both love to sew, were learning to knit (thanks to assistance from another resident) and slipped into a routine of tea most afternoons.
Not all my time was spent hovering over Dad. We would’ve drove each other up one wall and down another if that was the case. I pulled my sewing machine out a few times. Took time to read and knit. I also had several afternoons spent with Georgia in a sitting room, laying out a quilt called “Grandma’s Garden.” Georgia’s mom had hand stitched the flowers, but had done no further work. It was over twenty years ago that she had inherited those flowers. I didn’t realize this when I oohed and aahed over a few samples she brought to show our knitting guru, Wanda. As I’m looking at these flowers, she mentions that she had spent years laying them out and was never quite happy with the placment. Without hesitation I told her to bring in the rest and said, “we’re going to play.” After several days of us working on the layout, she said she was finally ready to put the quilt together.
Her stay at Hope Lodge offered an unexpected friend with the encouragement she needed to finish a gorgeous family heirloom. For me, I had no idea that I would finally learn to knit or that my enthusiasm could be of so much help to another. Georgia’s husband helped edit a book written by a volunteer at Hope Lodge. As for my dad, he made friends and had time with others that offered a bit of normalcy and even a few daydreams of new experiences once he felt better!
It’s because of moments like those that I know our time at Hope Lodge was a blessing. The support and encouragement everyone gives each other is needed. Also, there are volunteer groups like Hands on Nashville, churches, and even middle school dance teams that will cook supper for everyone staying at the Lodge. I didn’t understand it at first, but their value was immediately apparent when I realized that I could offer Dad more of my time because I didn’t have to go to the grocery store as often and I didn’t have to spend as much time cooking and cleaning. I wasn’t exhausted and actually got to enjoy time with Dad. On the day we arrived, I wouldn’t have expected that leaving would be bittersweet.
Two months after his stem cell treatment, Dad had regained enough strength that he was up to working full time. I still don’t know how he did it. His doctor is highly impressed with his recovery. He’s a star patient. Through the entire process, Dad reverted to what he did best. He broke it down into manageable areas that he could chart, track and examine. Every engineer loves a spreadsheet. It was a means to control and understand what could quickly become overwhelming. He had a detailed spreadsheet for his meds and was meticulous in charting fluid intake. He had a routine in his diet and exercise. His health was his top priority. He continued to work full time through the entire chemo process. My role was PR. I got pats on the back from friends and family for all the emails I sent out. I didn’t really do that much. I had a surgeon inquire as to my reason for being present before he had a port installed. I joked that I am his PR function and will have questions at the end for translating from “Doctor” to English. Turns out seven years of letter writing to taxing authorities has improved my communication skills. It takes time to draft an e-mail that doesn’t freak out or overwhelm my dad’s FIVE sisters, two brothers, and many other family members and friends. I didn’t realize how much everyone had come to rely on my emails until I asked Mom what she thought of Dad’s news the morning after an appointment with test results. She said she wasn’t sure. Dad came home and his only comment was “I got good news today.” She’d let me know once she received my email.
Truth be told, my dad is the strongest, most stubborn man I’ve ever met. Stubbornness became part of his strength. I know there were moments he wanted to give up but he didn’t. There were moments I told him I would break his fingers if he didn’t stop touching everything and allow me to open doors and touch elevator buttons since he had no immune system. He was wise enough to change habit and accept help rather than dwell on what he couldn’t or shouldn’t do.
I may have been the PR function and he did the heavy lifting, but everyone made a difference. My brother came up on the weekends and gave me a break. My mom was with him through the many months of chemo and the daily ups and downs. She was also the one that had to tell him he was not allowed on the roof once we left Hope Lodge. The gutters didn’t need cleaned that bad. Family and friends wrote to him and called. The support was necessary. He refused to let people come visit. It was too exhausting for him and the risk of germs too high. Their quiet support from a distance was rejuvenating for everyone. We each need reminders that we are loved and missed.
Dad, happy half birthday! You made it this far and still have a grin on your face. I’m so proud of you! Your positive attitude and hard work made all the difference.