Chemo #1
And so it begins…Chemo
I started writing this post over the weekend with the intention of highlighting how minimal my Chemo side effects had been, how badass I am and how it’s no big deal. I mean, I even worked out while getting chemo actively pumped into me because I honestly felt great! But in continuing the roller coaster ride that I’ve been on these past 3+ weeks, I should have seen the drop coming.
To be clear, my medical oncologist was very certain that chemo was the best route to take. I wasn’t so sure because I’ve literally watched a strong, healthy, vibrant loved one be absolutely crushed by chemo and die within 3 months. I know I’m tough, but the fear of having my quality of life disintegrate is very real.
Before making my decision to move forward with chemo, and while (still) waiting for a 2nd & 3rd opinion, I was able to consult with a Naturopathic Doctor (ND) and Fellow of the American Board of Naturopathic Oncology. She helped ease my fears by agreeing that starting Chemo was the best and right route for my diagnosis. An important thing to hear as a patient, is your doctor saying that it would be the treatment they would prescribe if they, or one of their family members, were in your shoes. That really helped to ease some anxiety around beginning treatment and allowed me to move forward. As a side note, my ND is also working with me on some additional treatments and therapies to enhance the effectiveness of chemo and ideally offset the side effects, and I hope to get into more detail on that in a future post.
So, last Wednesday, I went in for my first Chemo treatment. I wasn’t sure what to expect and had lots of feelings. Yes, I was anxious and nervous at the thought of injecting chemicals into my body that are literally designed to kill cells (sadly both good and bad), but in a way, I was also excited to begin the process of taking action. When you’re given the prognosis that I was, you’d also want to start doing something, anything, ASAP. The clock is literally ticking.
Let me explain what my Chemo treatment looks like. In the picture above, you’ll notice this flattering “port” that’s attached to my chest. This was a new accessory that was added to my body before I got discharged from the hospital in December. I think it was a free add-on with the colostomy surgery so why not get it! 😉 But in all seriousness, this port will become magic over these next weeks/months, as it saves my veins from being repeatedly poked. With just a little pinch of my skin, the port is accessed, the IV gets hooked up directly to that, and I get to have fully functioning, pain-free arms.
Each patient’s chemo “cocktail” is different depending on their specific type of cancer. I’m taking one called FOLFOX which is actually a combo of 2 different drugs. The first one, Oxaliplatin, is a 2 hour infusion that requires me to stay at the Infusion center. After that, I then get connected to the 2nd drug, Fluorouracil, through a portable pump and then I can go home. This drug infuses continuously for 46 hours so I had to get used to being attached to a machine. I only forgot about being tethered to it twice but thankfully the tubing was long enough for me to figure it out in time! Phew.
While I was on the chemo, the first side effect I noticed was something called First Bite Syndrome. (I only just learned the name for this in talking with another colon cancer patient but am so glad I wasn’t just crazy!) While I had been warned about mouth sensitivity to cold foods/drinks, I wasn’t prepared for this. Basically, whenever I took the first bite of a food, I’d get this cramp-like feeling in the back of my jaw. It caused a short intense pain that forced me to stop chewing, then it would go away like nothing ever happened. Weird.
On Friday, I went back to get disconnected from the pump and was still feeling pretty good. But by the evening, things started to take a downturn. I had avoided preemptively taking the anti-nausea medication, although it was highly recommended, because I thought I didn’t need it. If you know me, you know I like to eat, so I didn’t think this would be a problem. Guess who was stubbornly wrong! I felt pretty drained and nausea started to hit. I made my way to the couch where Nurse Molly was right by my side. I tried eating soup for dinner but just ended up with a small dish of crackers. That felt like a win.
Saturday started out pretty good, though I did wake up with a weird calf and heel pain in my right leg. Didn’t think much of it and went about my day like normal. Thanks to the meds, I had an appetite and had a really good eating day. But by the evening, the pain in my leg was so bad that I was hobbling around. I hardly slept that night due to the pain. When I woke up Sunday, the pain was worse and I could barely put any weight on my right leg. Eventually I called the doctor on-call, who suggested I go to the Emergency Room for fear of a blood clot. UGH. Not something either Chris or I wanted to do on a Sunday afternoon!
But alas, off we went…back to where it all started. A touch of fear walking back into that ER but also thinking, it can’t possibly get worse. An ultrasound revealed that I did have Deep Vein Thrombosis (DVT) in my calf and there were concerns of a clot in my lungs. If the clot was only in my calf, I could be sent home with a prescription for blood thinners but if they found a clot in my lungs, I’d have to be admitted for observation. Thankfully, a CT scan of my chest showed no clots in my lungs so I could go home!
I’m grateful that my stubborn self didn’t ignore this pain or this could have ended up a lot worse. I’m grateful that I know my body enough to know when things just aren’t feeling right. But don’t get me wrong, all of this is still really, really tough. The body I’m in now, is not the body I know. Externally, it’s noticeable with the colostomy bag, the bump on my chest for my chemo port and weight loss. Then there’s everything you can’t see going on inside. I’ve never taken so many drugs in my life and they are wreaking havoc on my digestive system. The nausea, stomach cramping and diarrhea associated with that was the last side effect of this go round.
I joked with a friend how as if the Cancer diagnosis wasn’t enough of a slap in the face, then came Chemo. Chemo was like, “Hey, what do you like to do? Oh, eat and move. Ok cool, let me take that away from you!” 🤷🏽♀️ But today, a full week after beginning treatment, I am finally feeling better. I’m not 100%, but I’m able to get up and move and not feel like I have to be couch-bound all day. I’m going to meet a friend for lunch today and may even take myself out to see the Whitney Houston movie. I’ll take the rest of this week pretty easy and gear up to do this whole thing again next week. But this time, I’ll be better prepared with what to expect. And my care team now has information to make treatment adjustments to better manage my side effects. It’s all gonna be worth it.
Thank you for the continued love and support and for following along on my journey!
I love you.
Dear Jess, thanks for taking the time to write this. You're so fucking strong and inspiring. Many hugs and much love from all of us.