The Feeding Tube
Feeding Tube Wednesday was the worst Cancer day to date. Last week was, as one friend put it, “Just Hold On” bad. It started on Tuesday when I couldn’t get chemotherapy because my white blood cell counts were too low. And they were too low because I was malnourished. My protein levels weren’t where they needed to be. That’s because every day for the past 2 weeks, I have eaten soggy cereal (Rice Krispies, Cheerios, and Kashi’s version of sugarless Honeysmacks), an egg cooked in water in a frying pan (so there are no burnt crunchy edges) dropped into a bowl of watery instant grits, and ramen. So. Fucking. Gross. I know. And before I get messages offering soups and juice and the importance of juicing, I know. I get it. You don’t get it. See; I sound bitchy and not loving… it’s been a bad week. So Wednesday’s feeding tube ordeal went something like this: We showed up at Brigham and Women’s Hospital at 8am, were corralled with other patients into a room where we were led parade style into a larger room and dropped off one by one at our hospital beds and told to strip down naked and put on the johnnie. Love me a good johnnie these days. I was scared as hell. The tears started to fall but I had a strong face and a strong heart. The nurses were amazing, my PA, Megan was awesome. Luckily a high school friend had warned me about the scar the feeding tube was going to leave so when Megan said, “it’s going to look like a second belly button,” I wasn’t surprised. Neat. I was given heavy sedation so I wasn’t completely knocked out but I was asleep. I vaguely remember telling one of my nurses how important I think it is for people to do something physically active and something that brings people together. So I was preaching as I was passing out… wtf?! After surgery, I woke up, felt nauseous as hell, was given medication for pain and nausea. I was in recovery for a few hours. Then I was moved to a room where Mike could be with me and I could decide when I wanted to leave. And that’s when it all went downhill. The nausea set in even more and I was prescribed more medicine. So many drugs in my malnourished body. The nurse checked my dressing- yep, it’s called a dressing, said it looked good and asked if I wanted to try standing up. Mentally, I couldn’t look at the feeding tube. Mike did. I watched his face as he inspected it and he just nodded reassuringly and looked me in the eyes. I stood up and thought someone must have fired a fucking gun into my abdomen and sat right back down. More nausea. The nurse brought juice and a sugar free popsicle. A wheelchair was brought in and Mike wheeled me from Brigham and Women’s to Dana Farber as fast as he could (every bump was like a sucker punch to my gut) since I was already late for radiation. Doped up and with the feeling of “I’m gonna puke,” and being in serious physical pain, my female radiation tech, Alicia and Susan, my radiation nurse undressed me in the machine room, helped me put on a johnnie and got me onto the radiation table. The mask was placed, I think I dozed off and 20 minutes later they helped me put my clothes back on. Mike wheeled me to our car and I slept the whole way home. I couldn’t walk on my own because the SEARING pain was so intense. “It’s going to feel like you did 1,000 sit ups” is what Megan said it would be like. No, Megan, no. It felt like someone had taken a knife to the left side of my belly, carved a hole into my raw muscle and jammed a strange plastic tube into it. Apparently having a strong core and getting a feeding tube aren’t a good match…just an FYI. I’m pretty sure I was wimpering (I know I was) while Mike walked me to our bed and helped me get as many pillows under my back and head as possible. I repeatedly broke out into a sweat because I felt like I was going to pass out from nausea and pain. I later learned from a friend that he kept checking on me while I slept just to make sure I was still breathing. That night wasn’t any easier and my voice is starting to go so calling for Mike’s help was impossible while he slept on the couch so I could be more comfortable. We finally made use of Sam’s baby monitor and I used the “page” button when I needed help. Thursday was more of the same with the addition of counting down every four hours so that I could take a straight oxy paired with lots of Tylenol and my trusty anti-nausea medicine. Thursday was Thanksgiving. We acknowledged the holiday with humor, naps and Gatorade. I finally took the dressing (so gross) off my incision on Friday and even took a shower. I was so proud of myself. I dressed it and vowed to use the actual tube for some formula nutrition the next day. So Saturday morning came and Mike kept singing some strange song about blinding me with science because he really wanted to “feed” me through the tube like the circus freak that I have become. We got into a fight the first time we tried pouring water down it. Mike moves fast. I move slow. Mike communicates by doing. I communicate by speaking- even if it’s at a whisper. An hour later we tried again and it was a success. And success means, we put water down the funnel that we attached to my tube and watched it go IN my body. Here are two fun feeding tube facts: 1) There is a 2 inch space of tubing from where it comes out of my skin and hits a clamp. Those 2 inches fill up with whatever I ingest. So this morning when I was drinking a red Gatorade, those 2 inches were red with the Gatorade I had put into my mouth, swallowed and then quickly saw seeping out of my stomach. Super neat. 2) I’m pretty sure the water and formula I put into my tube travels back UP my esophagus because it feels like a cold “heartburn” or a cold drip of morphine heading straight up for my throat. If it ever does come up and into my mouth, I don’t know how I will survive. I’ll let you know. My hair is falling out. My Oncologist said it might thin- it is. Every time I shower, there are clumps of hair left on top of the drain. I really don’t want to lose it. My whole body is already botched up with my c section, all of this tubing coming out of my belly and bright red sunburn neck… spare my hair. Given the shit that happened this week, I still refuse to attend a pity party or a why me reception. I’ll never leave those parties if I go so I refuse to even look at the invitations. But I have been thinking about all of the things that I THOUGHT I was going to be doing instead of what I actually AM doing. Like working out with Sam and another yoga mom who just had a baby, and bringing Sam in his baby carrier to a long boozy brunch with friends and playing “pass the baby” as I have done with so many of my friends who have had kids. I was even ready to complain about waking up in the middle of the night to breast feed and laugh about how many snacks I have to eat during the day. I should have been going back to work this week and should be writing about how lucky I am to have jobs where I don’t have to be away from Sam for too long but that I wish maternity leave could last forever. And this is where I have to laugh. Because the alternative is boring. So it’s Thanksgiving week and I have a feeding tube though which I feed myself FORMULA. I feed myself processed, chemical nutrition because it’s sterile, the right amount of vitamins and fats and proteins that I need in my body to fight cancer and get chemotherapy. Mike eats Thanksgiving leftovers from our friends, the Quinn’s house and Sam and I get bottle/funnel fed formula. Fine. I’ll take it. Because it (hopefully) means getting to spend A LOT more Thanksgivings in our future celebrating with the Quinn household. That’s my friend, Erin and her entire family. Next year I’ll be happy drunk making the gravy as I always do and someone will be cutting up Sam’s turkey for him into itty bitty little pieces. And we’ll play pass the baby. And the best part is that the whole Quinn entourage will read this and will remember to do just that…because I am loved…even when I’m bitchy.