So this is kind of a weird subject to be writing a blog post about. I far more commonly write recipes or tips about surviving as a Celiac in a gluten filled world. But not today.
I’ve sat in front of my computer several times in the past month wondering if I should let my fingers start clicking against the keys. Other days I’ve set up my video camera to word vomit a stream of consciousness to share my story and my feelings.
But it is today as I sit in my grandparents’ home the day after my grandfather’s viewing that I’m writing this. I don’t know if it’s the fact that I’m writing in the personal confides of my cancer journal with pen and paper, or if it’s the warmth and comfort of sitting in this home that fills me with the bravery to share my story. I just don’t know.
I have stage four duodenal cancer at the old age of twenty nine. Now, the use of the word old may be hiding a bit of my sarcasm. Twenty nine is a very young age to get duodenal cancer. I’ve been told that by almost every medical professional and every loved one close to my heart. But it happened. For whatever reason life gave me the hard roll and landed me with a rare cancer no one at my age should get.
My duodenal cancer story starts on Christmas Eve 2016. I finished eating gluten free lasagna with the family at my grandfather’s home. It tasted great. I went to bed. Then my world turned upside down when I woke up in the middle of the night. My stomach was not feeling well and I spent the next 24 hours becoming best friends with the upstairs toilet. The ER was the only logical destination for Christmas evening.
So I spent the week after Christmas at what I will call the VA Beach Hospital, due to being polite for reasons later on in this story. My stomach was blocked by a swollen ulcer in my duodenum, so I spent my time trying to heal up so I could leave the hospital and eat again.
For those uneducated in medical science speak like I was, the duodenum is essentially the uppermost part of the upper intestine. At the end of my VA Beach Hospital stay, they performed an endoscopy to verify the swelling in my stomach reduced. They performed biopsies as part of their procedures, and mentioned they didn’t expect anything out of it. Jinx.
The swelling in my stomach started reducing and I could start consuming liquids again, so I went home. With a caveat though, I was assigned a clear liquid diet for two weeks. This diet was my anti-Christ. Little did I know, but it would contribute to me losing twenty pounds in two weeks.
I went back to my home in NoVa and dragged myself back to work after the holiday vacation. Aside from my liquid diet, it was like any other sad return from a two week vacation. Then came the phone call that changed my life.
The nurse from the VA beach doctor called me at work, four hours away from their office, and asked me to come see the doctor later that day. I told her it was physically impossible to make it to their office that day, and asked if she could tell me what was so important. Sadly, the doctor wouldn’t share the new, only in person. I set up an appointment for later in the week, and called my mom to let her know. She asked if she could call the office to sleuth an answer, and I gave her permission.
I saw my mom in person the day before my VA Beach doctor appointment. The doctor told her, so she wanted to let me know in person that I had cancer. Ok. That was my verbal response. I kind of narrowed it down to a short list in my mind already. What else would they want to tell me in person? That my Celiac somehow cured itself?
When you figure out where to get treated for cancer, they say it’s smart to get a second opinion. Here’s my story for why. We met the VA Beach doctor, who told me they found two things from my biopsy. One, one of my biopsies came back with Celiac. Shock, surprise, waste of money. Two, I have cancer.
I’m glad we caught this early he said. I followed up with asking the staging, since the use of the wording early made me think stage I or II. He stated they didn’t know, because they didn’t do any tests yet. Red flag number one.
He also wanted to do a surgery the next day to remove it without any testing, just to get it out of the way and cure me. Red flag number two. I didn’t want to travel four hours one way anyways, but I wanted to get a second opinion from other doctors.
After talking with friends, I chose Georgetown University Hospital. I met with my GI doctor and instantly felt comfortable with him. They were honest, and rushed me to do a CAT scan that day. The CAT scan would let them know what areas were suspect in my body, so I did the scan and went home.
Later that day my GI and oncology teams called me, letting me know the CAT scan came back with areas of interest that indicated the cancer could have spread. My heart dropped for the first time in this experience, as my doctor explained this could be the difference between curable and treatable. I realized this is something that could stay with me for the rest of my life. I had trouble calculating what it meant that I may have incurable cancer and also asked for the first time if it was terminal, before I came to think of it as a stupid and useless word.
I did a PET scan the following week, which just so happened to fall on inauguration day. After I went into the city for the PET scan, but then I started feeling ill again. I was unable to drink or eat once again, just in time for the inauguration. Go figure. I called my doctor and went to the ER at Georgetown.
I stayed at Georgetown for a week where they fixed up my stomach blockage by placing an intestinal stent. It meant I had to switch to a low fiber diet, but I gladly took it if it meant I could eat. No salad is better than no food anytime.
I also was highly comforted by the staff at Georgetown, where I have a GI team, oncology team, and social worker. I have reassurance that they truly want to make me better, and they help me feel at ease. Some family and friends also visited, which made the stress far less.
Flash forward to the week before my first chemo. My side started feeling sore when sleeping, but I didn’t think much of it. The day before chemo started I found out my eighty eight year old grandfather lost his life fighting his throat cancer. I’d say there would be sadness, fear, a cocktail of emotions, but in the moment it was numbness. Since then I’ve processed the loss, but going into chemo I felt numb, yet ready for the procedure.
I went in for chemo, and found out the source of my pain side, a blocked gallbladder. We proceeded with chemo, but I had to come back the next week to unblock it, which we did.
I had a three hour infusion at the hospital, then a goody bag hooked up to me which I took home for forty six hours. I’d say the three hour infusion was bad, but I slept for most of it.
Day one of the home pump was rough. I didn’t change my diet, and I wasn’t preemptively taking nausea medicine. Bad life choice. Day two was better as I was always on nausea meds and ate smaller, lighter meals. I also started experiencing cold sensitivity in my hands. It’s a sensation where it feels like your hand is getting acupuncture. Super weird.
Once I got into the week, I really only experienced fatigue and diarrhea, so I lucked out. And here I am, in my off week, awaiting round two this weekend.
I hope if you’re reading this and know me, this provided insight into my past two months. If you’re going through cancer, I hope it gives you something to relate to. Much love until my next food or cancer blog post.