For as long as I can remember, my family has had the same nighttime routine. It was slightly different when my sisters and I were kids and we all lived at home, but the basic idea was the same. We eat dinner together as a family. We clean up (whoever didn’t cook dinner), and then we all troupe into the family room to watch TV. Sometimes, on the weekends, one of my sisters will make cookies. Sometimes, during the summer, we’ll take an after-dinner walk. Sometimes, if everyone is feeling particularly social, we’ll play a game. Mostly, we watch TV. Or, as the years have gone on, we multi-task with smart phones, iPads, Kindles, laptops, or crafts.
Recently, there has been a new addition to the routine. Sometime between TV show #1 and TV show #2, there’s the family activity of connecting Lindsey to her TPN bag. When I returned from Germany with my legs still swollen like tree trunks, barely able to walk, the doctors finally decided they needed to do something that would work about the 15 pounds of fluid that had been collecting in my body for months. Even the “quick fix” that was supposed to fix it didn’t make a difference.
So I was sent to get a PICC line (peripherally inserted central catheter–i’m looking more and more like a cancer patient every day). And I was sent an I.V. pole. And a bunch of boxes of gloves and alcohol pads and syringes. And a nurse to teach us how to use everything. And refrigerated I.V. bags full of a thick, white, slightly sweet-smelling liquid: TPN, or, “total parenteral nutrition.” Basically, this fluid infuses me over night with all the calories and proteins and other nutrients my body needs to function. Whatever else I can manage to eat during the day is “icing on the cake.” The protein in this bag is supposed to help my cells deal with the excess fluid in my body (which is there because there’s an imbalance of pressure in the veins in my liver due to all the tumors pressing on them). And the calories, eventually, will help me start gaining weight. Rather than legs like tree-trunks, now I have legs like saplings.
But back to the routine. It’s a fairly complicated procedure to connect the TPN, and it’s essential that everything be kept as clean as possible so as not to give me an infection. I can’t connect myself because I can’t reach the PICC on my arm, so it’s up to my family to connect me. In fact, I have moved home for the time being until I don’t need as much help anymore–more on that later. At the beginning I was stuck on “being a burden” to my family because of all the help I have been needing lately and all the time that the TPN takes (and the dedication–my sister is on permanent nighttime duty if it gets kinked or air in the line or the machine randomly starts making noise while i’m sleeping). But the more nights this has been going on, at the risk of putting words in my family’s mouth, I suspect they actually enjoy the TPN.
The other night I awoke from a nighttime TV nap to discover my family, gloved up and all wearing face masks, standing around the medical-supply table arguing animatedly about one of the steps in the TPN-insertion process. While they were arguing and I was fighting sleep, I remembered something my therapist has been telling me for years about being a burden on the people closest to me. People who care about me want to help, because they feel bad that I feel bad, but there’s not much they can do. My mother is constantly telling me, “I wish I had this instead of you.” My parents went to Germany with me to provide moral support, even though I was stuck up in the no-visitors-allowed ward most of the time we were there, and they were stuck in the hospital’s lobby. I felt bad I couldn’t see them, but they kept repeating, “We’re here to support you.”
The TPN is something tangible my parents and my sister can all do everyday to play an active roll in my recovery process. And it is already making me feel better after only two weeks. I can only hope that in two more weeks I feel even better. And two weeks after that? Maybe i’ll even have put on a few pounds. And more than that, it’s a departure from the no-interaction lifestyle that TVs and smart phones and iPads and Kindles promote nowadays. It forces everyone to talk to each other. If I could only stay awake for it.
I feel I should acknowledge here how amazing my support network is. Some people get cancer and lose their family and friends who can’t deal with it. My family is amazing. I couldn’t get through this without them.