On a previous trip to Charleston, I booked a room at the Courtyard by Marriot via the Guest Services division of the medical center. When I checked in, the attendant handed me my room key and a card with a small green stone attached to it. The word hope had been imprinted in white letters on the smooth stone. It was such a small gesture but an amazingly sweet one that made me smile and lifted my spirits.
Yesterday, Bill and I ate breakfast at our hotel. It takes me forever to eat a meal these days. I have given up on the idea that pureed foods will diminish the cough. I know that I cannot eat certain foods that are difficult to swallow. Everything else I cut into tiny pieces and chew thoroughly before swallowing. It now takes me an hour to eat a meal. I was initially afraid to return to a normal diet, but I needed to at least test my theory that Chester would be willing to accommodate certain thoroughly masticated foods.
I ate an omelet, one slice of bacon, and two slices of cantaloupe for breakfast. Everything was yummy, especially the bacon. I love bacon; I admit it. It’s crunchy, delicious, and incredibly versatile. I love it alone and in sandwiches. I love it cooked with potatoes and peas. It adds texture and flavor to salads. I just wish it didn’t come from a pig. Sometimes I am tempted to return to my vegetarian days -- I feel so guilty when I look at a cow – but then I remember how difficult it is to eat a dairy-free vegetarian diet. And I also look at my dogs’ teeth, remind myself how the food chain works, and try to feel less guilty about being (happily) an omnivore. Oh, and then there’s that small detail of me needing to gain twenty pounds. Seriously, bring home the bacon, fry it up in pan, and let me eat as much of it as I can.
We had time to kill before the appointment so Bill did some work and I wrote yesterday’s post. Then we bought some cookies; Bill chose Lorne Donne’s and I chose the Stella Dora assortment. We sat with our big boxes of cookies on the hotel patio and ate them like two little kids. Despite the gravity of the issue facing us, we talked and joked like a couple on their second honeymoon. Actually Bill and are a more like an old couple because he cannot hear well and I cannot speak easily so he is constantly saying, “What?” while I am resisting the urge to beat him for making me repeat myself.
We arrived at the Medical University of South Carolina (MUSC) shortly before my 1 o’clock appointment. After I checked in, a receptionist called us into another room. There they performed the necessary wallet biopsy, collecting our insurance information and my co-payment. We were then told to enter another room. “Looks like we made it into the inner sanctum,” Bill joked. I found a recent issue of Better Homes and Gardens, noting that MUSC had a much better selection of magazines than Duke (I could discuss how to improve waiting rooms for a very long time). I had barely settled into my magazine when a nurse called my name. “Really,” I thought to myself, “I’m not going to sit here for an hour to for my appointment to actually occur?” I am not used to such speedy service.
I weighed in at 79.8 with my clothes on. So, I had lost about 0.4 lbs since the TPN appointment last month at Duke. Of course, I had a stomach full of cookies at this weigh in. The nurse finished with her evaluation and sent me to a patient room. Within five minutes, the doctor and a nurse from Corom, the infusion company, entered the room. For the next 40 minutes, the doctor, Bill, the nurse and I discussed every feasible issue surrounding my weight loss, my options to address my malnutrition, and the realities of living on TPN. There was no doom and gloom, and no threats of “do this or you will die.” The doctor calmly and positively laid out my options: do nothing and try to gain independently, place another feeding tube, or do TPN. He assured me that he did not want to do anything that was not absolutely necessary. Then he discussed each of the options. We agreed that I was unlikely to gain the weight independently. We agreed that another feeding tube was completely out of the question.
Then we discussed the reality of living with TPN. They explained how we would carefully cycle the TPN infusions down from 24 hours to, eventually, 10-12 hours. We discussed little details like how we could minimize the amount of fluid so that I do not have to wake up several times a night to pee. The doctor raised the issue of how TPN can be incorporated into our lives in such a way so as not to interfere with intimacy (Yes, the doctor raised that independently. I was so impressed because I have met gynecologists who cannot talk about sex.) In my case I am not dependent on TPN so I can still eat as much of whatever I want. I was delighted to hear this because, for the last several days, my body seems to be handling food well (I think it was not fond of all the soy products. Perhaps being from an ethnic group that eats no soy has left me biologically incapable of digesting huge quantities of soy yogurt, soy pudding, and soy-based formula). Because I am not dependent on TPN, I can take “holidays” from it to go on a vacation. The more he spoke, the more I felt like TPN was do-able. He portrayed it in such a positive, quality-of-life oriented manner that I felt relieved. I no longer felt like I was in the fight for my life; I felt like I would just go on living, with a little help from TPN.
We discussed the risks, which center mainly on the indwelling catheter. He reassured us that with proper septic technique, line infections could be avoided. After much discussion, the doctor examined me. At one point he asked to untie the gown and told me I could hold it up to cover my breast. I had actually kept my bra on so thee was no need, but I joked, “Oh, please, after everything I have been through I really don’t care about someone seeing my boobs.” And we all had a good belly laugh.
After we developed a plan, the infusion nurse spent an hour teaching us about the infusion, the equipment, and all the related supplies. I was happy to see how small the pump was, to discover that it did not require me to be attached to a pole, and to learn that it came with a backpack so that it was portable for me. After an hour of instruction I was experiencing serious information overload. Here I am a former nurse, and I felt overwhelmed. How must other people feel when face with so much information about a process that is literally life or death? A line infection can kill you; this is serious stuff!
We left the clinic with a plan, a lot of information, and, most importantly, hope. I felt happy. We made our way to the Hominy Grill. My Charleston ritual is to eat at the Hominy Grill on my way out of town. I ordered a turkey club (with bacon) and French fries; Bill requested a pulled chicken barbeque sandwich. While we were waiting for our food, Bill placed his open hands on the table and I covered them with mine. “I feel hopeful, but I’m still scared,” I confessed. “I know, honey. I know you are scared of the TPN,” he reflected. But then he said something that surprised me, “And I also know that you are afraid to be hopeful.” I didn’t know that he knew how scared I was to hope that the TPN would work without introducing more medical drama into our lives, that I might start to dream about a better future and end up disappointed. After all the disappointments of the last 5 months, I am so afraid to have my hopes dashed again.
On the drive home I finally convinced Bill to let me drive so that he could rest. While he was resting, a disco song came on the radio. I pictured a teenage Amelia dancing with me at someone’s wedding. Usually I tear up when such a future image pops into my head because my initial reaction is “it will never be.” But yesterday, I smiled because it felt like a real possibility. I let the daydream continue. I thought about the two of us dancing while an older version of Aidan, with unruly longish hair, stood on the side of the dance floor trying to look cool in the way that teenage boys do. I pictured Bill, a “girlie drink” in his hand, talking with a friend. And I smiled some more. I let myself relish the daydream and believe it will come true.
I once wrote a thank you letter to my rheumatologist in Charleston. In it I thanked him for giving me hope and posited that giving someone hope was stronger than any prescription a doctor could write. I hold fast to this notion. Hope may not cure a malady but it can heal the weary soul, quiet the worried mind, and comfort the broken heart.
This new doctor of mine, yet another “ologist” to add to the long list, has once again given me hope that I can continue to live my life fully. Though I am so afraid to let that seed of hope sprout, I am trying to nurture it so if can grow steadily day-by-day and, ultimately, fully bloom.