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Riding on compassion (27 days till “The Ride”)

May 27, 2012

   I totally chickened out today. Well, all weekend actually. Patrick left for his annual guys-only camping weekend Friday, and I’ve spent the time since working up the nerve to hop on the bike and ride off all by my lonesome. I could have taken the chance to ride Friday night, but I hadn’t thoroughly convinced myself that I was capable yet. Plus, I was missing my coach, and I let myself get a bit down over that. It wasn’t that he was gone that upset me – if anyone deserves a weekend of relaxation, it’s him – but I’m just really bad at being by myself. I don’t find myself to be the best company. I’m sure it’s a deep-seeded issue with self-esteem I’ve had since as long as I can remember. And when I think about it, I’ve never really been alone, with a family of seven others always around, and then children. I just feel like I’m somehow better when I’m doing for others, and I have a really hard time doing more than just the basic necessities for myself. Having time to myself always has made me feel guilty.

   I got over the feeling rather quickly … some reading, some writing, some playing on the Internet. But by the time my enthusiasm returned, the sun had already set. Shucks, too late. Tomorrow.

   But tomorrow arrived, and I legitimately didn’t have time, as I filled my Saturday with an oil change, a ride out to Depew to pick up some materials for work and an evening trip to an area casino with my mom and sister, Mary. So, today I was supposed to ride the bike down to my parents’ house for the Memorial Day barbecue, but I allowed the bowl of fruit salad I was assigned to bring to serve as the excuse as to why I couldn’t. It was hard to believe that the bag swinging on the handlebar wouldn’t throw me off balance and knock me over, and I pictured the bike and bowl landing on top of me, coating me in a sticky mix of strawberries, blackberries, raspberries and mandarin oranges. So, again, I decided that I would make the solo journey tomorrow, and this time, I meant it.

   After dinner with the family, I took the slow, two-block walk home and decided to get my leg wrapped. The additional swelling is a sign that summer is closer than the calendar would suggest, as heat and humidity have already increased the circumference of the appendage slightly. I don’t even need a tape measure to prove it; all I have to do is wrestle on my jeans and notice that the left pant leg is a little tighter each day.

   I realized today how different this summer is going to be now that I have to take care of my left leg so carefully. With lymphedema comes an increased risk of infection because lymph is the fluid that transports white blood cells to fight infection, I learned from Roswell Park. Moisturizing the skin is a daily task to prevent dryness and breakage. One of the first warnings I received was not to expose the leg to sun because a burn could cause the dryness to worsen and the risk of infection to increase. This will not be an issue anyway because I’m going to be living in jeans or other clothing that hits my ankle all summer, considering I’ll still have the compression stocking to deal with. It will be a challenge not letting this bother me, so I have the chant pulsating in my mind, “It could always be worse. It could always be worse.”

   The hot and humid days make the care of the leg feel like a workout because once I’m done stretching on and peeling off the compression stocking (which I lovingly refer to as my second skin), I’m already sweaty and breathing as though I’ve just been in a wrestling match. The nearly 100 feet of compression bandages I must wrap around the leg each night give me the appearance of being one-fourth mummy, and I look quite odd hobbling around the house like this while donning shorts.

   As difficult as it seems now, it would have been more difficult to have begun learning the process of maintaining my lymphedema during this time of year, when heat and humidity make even menial tasks seem torturous. When I began to learn the regimen in October, I was lucky to have Patrick there with me, helping me to roll up the gauze that encases my toes and the eight mummy-type wraps that circle my leg from foot to thigh. Even with two of us working on the rolling and wrapping process, it initially took us 90 minutes to complete. It’s truly an art form, tightly rolling these bandages without having them escape your fingers and unroll in slow motion as they hit the floor. I became teary-eyed the first few times I had nearly completed one and lost it at the last moment – so much time wasted! Patrick is always seeking to help, so he found a great contraption online that promised to speed up the rolling process. First, it was green, and second, it was a hand-held crank that helped to spin the bandages. He even built a wooden platform for it. Soon after I started using it, I began to notice a high-pitched screech as I turned the handle. Apparently, there was no washer between the handle and the stand, and I was rolling bandages so quickly that I melted the plastic.

   After eight months, we’ve got the whole process from rolling to wrapping down to 15 to 20 minutes. Patrick rolls up the covering for my little sausage toes (our affectionate name for them because they are adorably bloated by the end of the day) because it requires a great deal of patience to handle, and anyone who knows me knows that patience isn’t my strong suit. The material is twice my 5-foot-2-inch height but less than an inch thick, so precision is required to coil it correctly. The desired end result is to have the material resemble an unbaked cinnamon roll, but I always end up with something that looks more like a rubber band ball.

   Next, I must wind this gauze around my foot first, and then around each toe except the smallest one to apply pressure, which forces the fluid back up the foot and leg. Wrap twice around each toe, then anchor around my foot and aim toward the next toe. Apparently, the pinkie toe holds enough pressure to drain itself. If I want to push more lymph toward a healthy area of my body, I can place a piece of foam on top of my foot, ankle and/or leg and wrap them together. When I was at Roswell Park, my physical therapist did this with my leg at one point, using a ridged piece of foam. Once unwrapped, my leg’s appearance reminded me of a rippled potato chip.

   Once the eight compression bandages are all coiled and lined up, Patrick secures strips of packing tape as I wrap the leg, starting with the toes and working my way up so that the excess fluid is forced up my leg to healthy areas of my lymphatic system. It’s easier to use the packing tape to hold down the ends of the wraps so I don’t have to worry about one unraveling down my leg while I’m attempting to apply the next one. This is a temporary fix until I find longer-lasting, reusable tapes. While equal in length, the bandages differ in size, and I use two each of 2, 4, 6 and 8 inches in width. More pressure must be applied from the bottom up, so the smaller sizes are overlapped beginning at the foot, continuing up until I’m fully covered to my thigh.

   The physical therapist at Roswell Park taught me to wrap in a figure-eight motion (instead of just in circles) to more effectively move the lymph fluid. Once completed, I’m unable to bend my leg, so I have to limit my activity as much as possible, which is difficult for a woman who can’t sit still. Patrick and the kids find it amusing that once I’m wrapped, I gallop sideways more than I walk because I can move faster that way.

   While this sounds bad now, it took a good six months to get fully used to the process. When I first began the regimen, I was required to wear these bandages 24 hours a day, seven days a week for three weeks. I didn’t take time off work, so I was at Roswell Park’s Lymphedema Clinic by 8 a.m. every day for the manual lymphatic drainage (this is the “good news” massage) and wrapped and ready for work by 9 a.m. Since the lymph node running to my leg has been damaged, the protein-rich fluid just pours into my leg and into the soft tissue, leaving it no path out of my body without assistance. The therapists at the Lymphedema Clinic introduced me to a method that fights this process – it’s almost as if the body is fighting gravity. The therapists began with manual lymphatic drainage, a type of massage that stimulates good lymph nodes throughout the body so they accept lymph fluid from my left leg, thus reducing the swelling. Once the massage is done, it’s compression bandage time. These bandages force the fluid up the leg and into the rest of the body so it can be expelled, and they also prevent more fluid from building up. Because it isn’t practical to wear the bandages 24/7, I must wear a compression stocking during active times of the day to maintain the work the compression bandages did while they were worn.

   One of the most difficult tasks after my leg was wrapped during the first three weeks was stuffing myself back into my car, since I couldn’t bend my left leg. At home, I had to do something I often didn’t do – ask the kids for help with simple tasks, such as carrying a laundry basket up and down stairs for me. I’ve always been fiercely independent, so it bothered me that I felt like I was being waited upon by my children. I’m sure I could grow accustom to negotiating stairs with a laundry basket in my hands – moving very slowly and performing somewhat of a wedding march as I go so I do not trip myself – but I’m sure I’d be answering to the kids and Patrick if I dared to attempt it. It’s not worth breaking the other leg or worse to protect my pride.

   Emotionally, walking in and out of Roswell Park was very unnerving. When those from Western New York hear “Roswell,” the word doesn’t conjure up thoughts of aliens, UFOs or Area 51. The word is synonymous with cancer, and those who hear it know you are receiving the best care, but they also fear the worst. I felt guilty eliciting glances of sorrow and concern from volunteers, doctors and others who were there on a daily basis because in reality, I wasn’t really sick. I had beaten cancer seven years prior, and this residual effect of my surgery was nothing compared to what others around me were going through at any given moment. I felt that others in the hallways and waiting rooms deserved the worries more than I did.

   Once I was free to manage the condition at home, it took a good six months before I could get a full night sleep without waking up suddenly due to unmanageable pain. Imagine the worst leg cramp you’ve ever experienced. Now imagine that it is on fire. I couldn’t tear those bandages off fast enough. I had begun to worry that I would not be able to go more than four hours per night with my leg wrapped, causing the leg to swell larger again. My therapist suggested that I might be hitting a nerve as I wrapped or that as the swelling eased as the bandages did their work, less fluid was available to protect the nerves, causing discomfort as they were squeezed. Thankfully, I’m either not experiencing it anymore or I’m so used to it now that I sleep right through it. Perhaps someday, I will get to this comfort level with the overall condition, becoming so accustom to having a fat leg that it won’t rouse my ire any longer.

   As I’m carefully winding gauze around my toes and bandages around my leg to encourage the lymph fluid to find a proper exit from my body, Patrick offers words of encouragement while admiring my fat leg and sausage toes, and it’s hard not to feel good despite it all. I’m so lucky that he can still find me beautiful after all of this.


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