The weekend before Joey began treatment, I was away at the Global Genes Patient Advocacy Summit learning about what I could do as a caregiver and how I could empower Joey as a patient. My mother was attending the Global Genes Gala with her business partner and they had invited me to join them for the weekend to recharge on a beach in Southern California before a long fall and winter in Seattle. By the end of the weekend, Joey and I were feeling as prepared as we could be to start this journey.
We set our alarms for 6am so that we could get breakfast at one of our favorite spots, Petti Rosso before we headed to the hospital. The entire morning, Joey was talking a million miles an hour. I could have sworn he was on speed. Sometimes, when you’re super nervous or scared, it helps to turn the circumstance into an “adventure.” That morning, we talked about cancer as an opportunity. What could we do with this? How could we squeeze some goodness out of something so awful? Blogging was something we both wanted to do, in line with our goals together prior to his diagnosis. Trying to research Acinar Cell Carcinoma of the pancreas is a nightmare. There’s little to no research about it because so few people have been diagnosed with it before. Those who have, have been mostly over the age of 50. Joey thought it was important to document his experience so that there would be a better understanding of how someone in his age bracket would weather the storm. I thought it would be important to document my experience so that other caregivers in and out of my age bracket could find something relatable or entertaining to read. Also, so that I could hand over my blog to my psychologist a few years from now and they could better assess whether my insanity was circumstantial or just hereditary.
We car danced all the way to the hospital, after finding some magical Seattle radio station that was throwing back some early 2000’s hip hop. When we got there, they took us straight back to the “extended stay” room where he would start his treatment. A handful of super friendly nurses came in and gave us a very in depth breakdown of the drugs they would be giving him. His regimen is know as G-FLIE (gemcitabine, irinotecan,, leucovorin, bolus/infusion 5-fluorouracil and oxaliplatin). That’s essentially four different chemotherapies with a vitamin thrown in there (sounds hilarious, when you put it that way). The nurses explained that there would be side effects for each drug, ranging from nausea to permanent nerve damage. One of the side effects was extreme cold sensitivity. They advised him not to open his fridge or freezer and warned him that his first breath of cold air might make him feel as though his throat was closing up but not to worry because he would feel better after exhaling (can you imagine!?). Nevertheless, I held his hand, they accessed his port, and we were on our way.
We had arrived at the hospital at 8:30am with a bag full of cookies and technology to entertain us. Six hours seemed to pass really quickly. After his in-house treatment, they attached a pump to him so they could pump another eight hours worth of chemo into him. By the time we left, he wasn’t feel great but he wasn’t feeling awful. The color in his face appeared to have a few more shades of gray but overall, he was doing ok. The doctor gave him a card to get medical marijuana and the first stop we needed to make on the way home was at the Seattle Medical Marijuana Dispensary.
I dropped him off at home and ran to pick up his medications. The doctor had prescribed four medications that the pharmacist informed me would have been $400 had he not had incredible insurance. After taking all the medications and eating some sort of butternut squash/pumpkin hybrid, we slept until Joey’s two hour, 3am, extended hiccup session. You’ll never know how scary hiccups are until the person you love is doing their first round of chemotherapy and a voice in the back of your head tells you that hiccups must somehow equal death. I was up all night googling hiccups, their causes, and what the correlation was between chemo and hiccuping. It’s normal, of course.
We were both exhausted by morning. The benefit of living in Seattle is that coffee lives on every block. I ran to the closest espresso while Joey took his first dose of Rick Simpson Oil (RSO) before we headed back to the hospital. By the time we got to the hospital, I thought I was going to have to carry him inside. He was happy and feeling great but it was a lot like managing an unruly child in slow-motion. The nurses got a kick out of the whole ordeal and when volunteers came around to ask if needed anything, Joey responded with “cheese”. He ate about eight blocks of cheese and all of the crackers they had available. Oh, and he was hiccuping the ENTIRE time! We now have a prescription for that.
The second round of chemo goes much faster than the first. He only has three hours of chemo and then a pump that he goes home with that goes off with a police car siren right when you think you’ve fallen asleep. It’s terrifying not to know what to expect in terms of how someone will react to having so many hours worth of poison pumped into their bodies.
When we got home, he seemed mostly ok. A few hours into the night, he was feeling awful. The nausea was really kicking in and I stuck a bucket by his bed, just in case. He used it almost a minute after I put it down. I hadn’t even had the chance to put a garbage bag into it yet. I spent about 45 minutes cleaning up toxic puke and then about 5 hours lying half awake worrying about how uncomfortable he was and what would happen if he puked toxic vomit on our mattress. Solution? Amazon prime! Seattle really is the best place to live if you have any kind of illness that isn’t affected by rain. We now have an Amazon service that delivers your items in under an hour. We just ordered a vinyl mattress cover. You never know…
This is what we do now.
About Sammy Witness
Sammy is a Florida native living in Seattle with fiancé and rare pancreatic cancer patient, Joey. She is experiencing being a rare patient caregiver for the first time and wanted to document her experience after attending the Global Genes Rare Patient Advocacy Summit this past September. She works as a social media and online marketing consultant.