It has been an intense 10 days! I finished my 24th radiation treatment today (FLY THE W!) and am feeling better today than I have the past week, but it has been a hard slog recently.
I could write a post everyday about some amazing thing that Camilla does to help me get through each day. She hates the attention so I’ll follow her wishes by not continually exposing her greatness…but it is International Women’s Day so can I just say it is an honor, thrill, and blessing to have a co-founder in life like Camilla.
One of the silver linings to this experience is that it has reconnected me with friends and family that I hadn’t talked with in a while. So many people continue to reach out regularly with encouraging texts, thoughtful notes, and gifts — they all seem to get to me at just the right moment and bolster my spirits. One of my friends at church on Sunday walked up and just gave me a hug and whispered “just wanted to tell you that I love you man”. It was really simple and really impactful. Monday of this week was a tough one and “by chance” I had a friend in town from Arizona who was able to spend half the day with me in the hospital as I got fluids through an IV. I’ve got a few friends coming in from out of town later this month that I haven’t seen in a long time.
The other silver lining is that I’ve met some amazing people also going through cancer treatment. There are 4-5 people at my daily radiation sessions and 2-3 people at the chemo shop that I’ve started to become friends with. We root for each other. We commiserate with each other. We share tips and tricks to managing side effects. We talk about our families to each other. They are so positive and so uplifting to be around.
A rough week
My last post was when I had the misconception that a feeding tube followed by a constant flow of calories would quickly get me back up to my fighting weight and feeling better. I was so young and naive back then 🙂
I did get a feeding tube placed 10 days ago but it felt like I took several steps backward before I could really move forward. I haven’t gained any weight back but I have not lost any more weight so maybe the 165-170 range will just be the new me for a few more months.
The actual procedure of getting the feeding tube placed was not terrible. They basically punched a small hole in the top of my abdomen and inserted a tub that is as big around as a pencil. The tube extends out about 8 inches from my stomach and has a cap on it. The tube is semi-floppy and allows me to bend it upward and tape it to my lower chest. To feed myself I pull the cap off and insert a larger syringe and then pour formula in the top of the syringe, letting gravity pour it into my stomach rather than pushing it through.
A few hours after the procedure and right as I was getting ready to leave the outpatient center at the hospital, I started to feel the pain and the cramps. The tube goes through the top abdominal muscle and as I cramped the muscle would tug on the new wound. It was a pretty miserable 24 hours after the procedure but was able to slowly get some “delicious” unflavored high caloric formula in me.
By the time Wednesday rolled around I was getting the hang of things and having minimal cramping. Wednesday was chemo day and I got a “mega dose”. I usually get about 80 ML of my chemo drug and this dose was ramped up to 200 ML. The good news is that the new dose is only given once every three weeks so it gives me two weeks chemo-free. I could really feel the impact of the higher chemo dose. Mouth sores were worse, fatigue was more intense and lasted much longer (still feeling it!), and I’ve had some nausea. For the first time during treatment I threw up…and threw up….and threw up. I’ve got good meds that mostly control the nausea but sometimes I just gag on all the junk in my mouth and lose all the hard work I put in on the feeding tube during the day. I spent a few hours on Monday getting some fluids via an IV to stay hydrated and I’m doing lots of water and pedialite through the feeding tube.
I know I’m a broken record on this, but it is just so important — stay present, stay in the moment, face today’s issues and don’t worry about tomorrow or next month. That’s my goal!