The last time I posted was July 21. A lot has happened since then. This is my sob story.
Shortly thereafter, I traveled to Maine with my 2 daughters to visit family for a week. I was about 1.5 weeks into my third chemo cycle, so I was beginning to feel better, and felt pretty good the whole week (minus the last day, which we will get to). We go every year, but this year was especially exciting (and imperative that I be there no matter what) because my 4 sisters and I were meeting our long-lost older sister for the first time, whom we only found out about last year. It was a great reunion, and she will forever be a part of our family now (whether you like it or not, Lisa 😉 ). The week was filled with other fun-filled activities as well, like going to the beach, climbing on the rocks at The Lobster Shack (a definite must if you ever find yourself anywhere near Cape Elizabeth, Maine), visiting the lighthouse where I got married 21 years ago, and going to an amusement/water park. Like I said, I felt pretty good during all these activities.
Then, on July 30, the last day of vacation, I went out for lunch with one of my sisters. After you exit the restaurant, you have to go up a flight of stairs to get to the parking lot. I was so out of breath I couldn’t talk when I got in the car. Weird. I mean, I am totally out of shape, but I had walked around all day at the amusement park the day before without any issues. We went back to my mom’s house, where a bunch of my family started playing card games. I was on the couch, and when I got up to get a drink, I got a sharp stabbing pain under my ribs on the left. I remarked to my mom that I must have slept wrong on it or something. The pain continued, and I laid down on the couch and took a nap. I felt worse when I woke up from the nap. I sat up in a chair, hoping that would help the chest pain. It didn’t. Then I remembered the right calf pain I had been having for the past 2 weeks. I had woken up with it one day out of the blue, and assumed it was a pulled muscle. As I sat there in the chair, I put two and two together, and realized the calf pain was a DVT (blood clot) and that it had now traveled to my lungs and caused a PE (pulmonary embolism, blood clot in the lungs). I started crying immediately. This was the afternoon before we were leaving to go back home (by plane). I told my mom we needed to go to the ER.
When we got there, we were taken back right away (a cancer patient with chest pain, possible PE is high priority). The doctor came in right away as they were doing an EKG (which came back normal, other than tachycardia). My resting heart rate was in the 120’s to 130’s, normally it is in the 60’s or 70’s. I went for a CT very quickly, and it showed lots of blood clots in my right lung, and a few smaller ones in my left (where I was having pain). It hurt to breathe! And I had a fever of 102.9, which I find weird, but explains why I felt so crummy. The ER doc put me on Xarelto (a blood thinner), and told me I’d have to be on it for 3-6 months. I begged him to let me go and travel home the next day. He reluctantly agreed (if I wasn’t traveling he would have kept me overnight). Xarelto doesn’t dissolve the existing clots, but prevents new ones from forming. It starts working right away, so he felt ok with me leaving. Plus I am a medical person, so he trusted me to know if I got into trouble again. The following day, we shifted all the stuff we were taking on the plane into my two daughters’ backpacks, and I just had my fanny pack with my wallet. I couldn’t carry anything, or walk very fast. The airport sucked. Anytime I got up and walked even a few feet, my heart rate shot up and I was super short of breath. My chest still hurt like someone was stabbing me with a knife every time I inhaled. Somehow we got through it, and made it home safely. I have an oximeter at home (measures oxygen and heart rate), and over the next week my heart rate slowly came back to normal, and the chest pain went away. The lowest my oxygen got was 92%.
I saw my oncologist for my last infusion 4 days after I was diagnosed with the PEs. He looked at everything, and said that I needed to be on the Xarelto for a total of 3 months (since there is a clear reason why this happened: cancer and chemo put you more at risk for blood clots). We discussed the chemo, and both agreed that going ahead with the last round of chemo would be fine, and no need to delay it. So I had my last round of chemo while trying to get over bilateral PEs. I was pretty miserable for that first week.
Oh, I forgot to mention, the night before my infusion we had severe thunderstorms, and I was woken up in the middle of the night to a loud clap of thunder. Then on the morning of my infusion I went into my home office (which faces the front of the house) to find this as my view:
I ran outside and found this:
So, lightning really did strike. Ugh. Just another headache to add to the year 2022.
Then, on the third week of my last round (I was so close to the finish line!), I got super short of breath again, and my resting heart rate returned to the 130’s. Fearful that more blood clots had formed, I went to the ER again (I hate that place!). They did a CT scan of my lungs, and found the blood clots were gone! Like totally gone! Hallelujah! But they weren’t sure what the cause of my shortness of breath or tachycardia was, so I got admitted. I stayed for 3 days, and the best they could come up with was severe dehydration, which makes sense to me. I was soooooo thirsty the week before being admitted, I was drinking everything in sight. I drank a gallon of orange juice in one day, along with milk, gingerale, and lemonade. I couldn’t get enough. But all of that fluid went through me super quickly, and within 10 minutes of drinking, it would end up in my ileostomy bag. My urine output was very low. I was trying to hydrate myself but I couldn’t. So that’s why I ended up in the hospital. All of this sucks, and I was super weak for the week following discharge. But I’m happy to report that I felt much better the second week.
So, to recap, chemo is done! PE’s suck. So does dehydration. And so does a tree falling on your house (no damage to the house, miraculously). I am DONE with complications, and from now on, I will WILL my body into behaving. I actually felt good enough to volunteer at the Twin Cities Get Your Rear in Gear colorectal cancer 5k. Next step: Ileostomy reversal surgery in November!
Life in the Outside Lane 