Throughout my participation in the Protégé Encore study, people have been asking me what I’ve liked or hated about the experience. I must say, in all truthfulness, that it has been both my utmost joy and my deepest pain to be limited to the use of one hand in the shower. The study requires daily infusions and blood draws, you see, and the nursing staff is nice enough to keep an IV port in my arm so that I don’t have to be picked time and time again each visit. The IV port consists of an inch-long twist-off nozzle that connects to a super thin tube called a catheter inserted into a major vein between my wrist and elbow. When I come into the hospital, the nurse twists another nozzle into my twist-off nozzle to hook the IV line into my port so that the fluids can flow in and blood can be drawn out. The nurse is then able to switch between saline solution that drips from a large bag on the IV pole and the treatment drug, called teplizumab, which comes in a tiny bag. Having the IV port makes everything so much easier and more sanitary, of course, but it also means that I spend a significant amount of time maintaining the tiny tube coming out of my forearm. It needs to be flushed every eight hours with saline solution that I take home in twist-on syringes and it’s not supposed to get wet and it could rip out of my arm if it gets caught on something and it could literally burst out of my vein if I push with too great of pressure when, for instance, I get out of bed. Lovely, I know. It really isn’t all that bad, though. I get to wear a cool Avril Lavigne (or rolling pin) sleeve over the whole set-up and I’ve gotten to where I don’t even notice it when I’m sleeping. I don’t notice it much of the time, really… EXCEPT for when I need to take a shower.
If you’ve had a broken limb or a cast of any kind, you will be able to fully relate to this experience. People advised me with all the different ways they bathed in casts—intricate procedures involving Saran Wrap, rubberbands, athletic tape, and plastic grocery bags—but none of these methods has proven successful. I always end up with a soggy bandage and a sensory-related gag reflex check. Then, my sister said something genius: “Why don’t you just not use that hand?” Hmmmm! Noted! My current system has been to wrap the bandage around the IV port, the Saran Wrap around the bandage, and then to force myself to hold on to the shower door with that hand and not use it. Ah, problem solved… IF YOU KNOW HOW TO ONLY USE ONE HAND IN THE SHOWER! And I, sadly, did not. But I’m learning! The key, for me, is to be able to rub shampoo into your hair with only five fingers and to rinse it in the same manner. If this seems easy to you, then go ahead and try it. See how satisfactory your showering experience is. It’s taking practice, but I think it’s coming. I can honestly say that this has been the most inconvenient part of the Protégé Encore study so far, and I feel quite thankful for that. There are far worse things we can experience in life than renewed appreciation for appendages.
Next up: more information about what I’m actually doing here.