The Holiday Season
Mike and I spent Christmas Eve and Christmas at Brigham and Women’s Hospital in Boston. We had just been there two days before in their Emergency Department (for nine hours) trying to figure out these mysterious fevers with temps now hovering around 104. On the morning of Christmas Eve, I woke up with a fever, Mike called my Oncologist (my voice still doesn’t work) and she said it’s time to be admitted and get down to the bottom of these fevers because they’re not normal. I somehow got myself into the shower, dressed in sweats for a hospital stay, Mike packed Sam’s “First Christmas” outfit for him to wear (without us) and we sent him to Maine with my mom who drove down to pick him up and bring him back with her.I slept the whole way to the hospital and then cried when the ER Dr came in and said, “Wow, you’ve been through a lot and I’m sorry you’re here on Christmas and not with your son.” I was sorry too. I was sorry to be sick, to have put Mike through so many hours of sitting in stale hospital chairs next to my hospital beds, sorry that we wouldn’t be there for Sam when he woke up from his car ride nap, sorry that it was my body that, of course, wasn’t following the typical cancer patient route and was instead veering into all paths of inexplicable destruction in the way of goddamned fevers. Augh. I was admitted to the Oncology 16th floor and since it was Christmas, they brought a stretcher into the room for Mike to sleep on so he wouldn’t have to sleep in the plastic recliner. When we got to the room, I sat at the bottom of the bed and then curled up in the fetal position and started sobbing. My nurse, Erin, whom I had never met, came in and put 2 hands on my legs and just held me there before we got started.I was poked and prodded in every way possible: a pipecleaner bristley thing was jammed up my nose (I saw stars) to rule out the flu, blood was taken in large amounts from both arms, a q tip swabbed (but felt like shoved up) my asshole, and I was given a steady dose of dilaudid for the pain in my throat. My coughing and gagging routine has continued and now instead of fighting the urge to throw up, I have taught my body to just let it happen. So lying in my hospital bed with Mike next to me, I threw up in a bag and then went back to scrolling Instagram. On Christmas Day, we met with Infectious Disease Doctors. They’re a strange bunch. I’m super thankful for them and if Sam wants to be an Infectious Disease Doctor someday, I’m all in, but I’m pretty sure given that Sam is OUR baby, he will never be THAT smart. These guys asked a bajillion questions. After the interrogations, it seemed that maybe, maybe, maybe I had been re exposed to Lyme Disease. I was given antibiotics and ordered blood tests to see if their theory could be right. Since all other tests came back negative and I hadn’t had a fever in 12 hours, I was discharged late Christmas afternoon. We drove to Maine, hung out with family for a bit and then took Sam home with us.The following days are still a little bit of a blur (even though it was just this past week). It was my lowest of cancer lows. More fevers that I decided to fight through at home instead of going back to the hospital. Pain in my throat. Coughing, gagging, throwing up. Garbage bags of tissues filled with my mucus and phlegm. My bed. Sleep. Pain medication. Hot. Sweat. Cold. Chills. Snarly hair caught in chapped lips and sticky formula throw up. My feeding tube wrapped up in blankets and pulled tight against Mike’s tshirts that I’ve made my own. And no one to talk to because 1)I can’t talk, 2)Mike was so mad at me for not going back to the hospital that he refused to talk to me, and 3)I couldn’t stop the dizziness to text. It was a one man show. We don’t have a TV in our tiny bedroom so I couldn’t escape into a movie or trashy reality shows. I couldn’t concentrate long enough to read a book. I willed the hours to go by, the days, and the fevers kept creeping back even after copious amounts of Tylenol. I poured Gatorade down my tube to put all of the tears and sweat back into my body. There were times during that week where I would literally say to myself, “breathe in, breathe out” and my breath would follow my words. It felt like it was the only thing I had control over and even then it was dicey given the hacking cough that would break my flow. I begged God for a light. I begged even for a fucking tunnel that maybe one day would lead to a light. The darkness was thick and rich and was swallowing me whole. It. Was. Rough.And then 2 days ago I woke up and I didn’t feel feverish. I moved from my bed to the couch. And then yesterday I woke up and still didn’t feel a fever and I put on pants and shoes. For the first time in 5 days, I went outside and got into the car. Mike and I spent 8 hours at Dana Farber. They did a CT Scan with contrast to look for an abscess that may have been hiding in my neck. The scan came back clean. No abscess. I’m still waiting on Lyme disease blood work to come back. I’m so weary of jinxing myself but I hope, hope, pray to God that these fevers are over. My Dr’s believe that I could be one of the few people who have this type of reaction to the radiation and stress that my body has had to go through for the past 2 months. I don’t care what it is as long as I start to feel better. As long as there is a tunnel. Last night I only sweat through 5 shirts and threw up off the side of my bed once.And now it’s New Year’s Eve. Here’s what I have to offer: To say that “life is short” is lost on us. We don’t get it. To sing the “Live Like You Were Dying” song is nice but after the next song comes on, it’s out of sight, out of mind. It’s so strange. We’re all so different. We could all disagree on EVERYTHING and at the end of the day, the one thing we have in common is that we will die and we don’t ever really talk about it. So instead of talking about the dying part, I’ll remind you to do the living part. If you wake up every morning unhappy or just “so-so;” make a change. Make a fucking change. If you find yourself in the middle of the day miserable and counting down the hours to get out of your job; change your job. Even if you’ve spent your whole life working just so you could be in this position. We get to change our minds. We get to try new things. Just do it. You have no idea what new doors will appear and open for you. If you’re in a relationship that has been going nowhere for a long time or a short time; make a change. Fix it. Leave it. Do. Something. If you say to yourself, “I’ve always wanted to…” THEN GO FINISH THE SENTENCE AND ACTUALLY DO IT. Put it on your credit card and figure out a payment plan. Take the time to make shit happen because NONE OF US ARE GETTING OUT OF HERE ALIVE. You have this one motherfucking precious life. And you know what? I’m not urging everyone to go climb Everest and get divorced. It’s the small stuff. The every day real stuff that makes a life that has actually been lived. If flowers in your home make you happy and put a skip in your step, buy the flowers. If you’re living your life “in the box;” get out of the fucking box. It’s the lamest life ever. Stop doing things just because “that’s what you’re supposed to do.” Not everyone is supposed to buy a house, not everyone is supposed to have kids, 2 dogs and an SUV. Go on vacation where you WANT to go. Make time to see your friends. And if you don’t have any friends or you’ve lost touch with them, make some new ones. Spend time with your family outside. Amazing things happen outdoors. If you say “Oh, I’ll probably never…” with a melancholy tone, pick up your sad self and figure out a way to make it happen. We don’t want to be on our death beds with regrets or with jealous feelings of “I should have done what so and so did with her life.” And sadly, we all don’t get to be on our death beds at 90. For some of us, the beds are made earlier. Make the change now.My skin biopsy came back. It’s more cancer. I have double cancers that have nothing to do with each other. The mole was there before Sam was born… it just got bigger with pregnancy. Mike and I weren’t shocked when the dermatologist called. Luckily it’s not melanoma. It’s basal cell carcinoma; the most commonly diagnosed skin cancer. From too much sun. Last year you could find me in a teeny O’Neil bikini with my legs sprawled out on a beach towel, big ol’ pregnant belly roasting in the sun. This year, you’ll find me under a huge hat with a Lands End tankini. It’s cool. I just want to be alive. I have to schedule a time to get the mole removed layer by layer. Luckily it’s an in office procedure but if it goes too deep, I may need plastic surgery since it’s on my face. Let’s hope it’s not deep. This skin cancer thing is small peanuts next to my throat cancer diagnosis. I think about how I would have reacted to it if I didn’t have throat cancer. I probably would have been dramatic but not learned anything from it.Make some changes. You get to choose most of your life, but not all of it. Choose something better for yourself. And if you have nothing to change right now, keep on doing you because that’s how you can inspire others to grow.