Chemotherapy is weird

For a lot of people, chemotherapy is scary. To some it brings hope for remission or even just a few more weeks or months with loved ones. For all of us, when we think about intentionally pumping toxins into our bodies and dealing with the subsequent side effects, I think we can all agree that chemotherapy is weird.

Don’t get me wrong. I am grateful for this weirdness and do hope and pray it will destroy any lingering cancer cells not removed during surgery.

One of the super weird things about chemotherapy is that two people can be on the exact same chemo cocktail and have different reactions and results. So here’s my journey thus far and how it has gone for me.

First thing’s first: a port

Just over three weeks after having the Whipple procedure, I had surgery to install a port. Having a device under my skin with a catheter into a vein is odd. But I am so happy to have an easy way to get an IV without having to stick my poor arms every week.

Compared to previous surgeries, this one was a piece of cake. I was put under twilight, so no horrific conscious sedation this time, thank God. My shoulder was a little sore for a few days and it took a couple of weeks to be comfortable sleeping on my side. Not a big deal, relatively.

About a week later, chemo started.

Chemotherapy cycles

I love to learn. And holy crap have I learned a lot over the past several months. Among the things I now know is chemotherapy happens in cycles. For me, the plan is six four-week cycles. Weeks one through three I get an infusion and take a daily oral chemo then have week four off. I look forward to that one week, so I think of each of these cycles as a reverse period.

The first cycle was probably the most difficult so far, simply because I had no idea what to expect. After the first infusion, it was like someone had turned up the gravity around me. I felt so heavy. Other than that, the infusion was pretty easy. I sat in a comfy chair and read for a little over an hour.

I also started the pills as directed. Four pills twice a day. Ugh. I hate taking pills. And it’s a little disconcerting looking at a bottle with labels stating “Toxin” and “Dispose of as Bio-hazard.” Holy hell. What am I putting in my body? When I think about the pills, the chorus of Bad Medicine and the weeeooo weeeooo part of Toxic get stuck in my head.

Because I have these toxins in me from the pills and infusions, I have to be careful and do things like close the toilet lid (always do anyway) and flush twice and be careful to not sweat on anyone so I don’t share the toxic love. This makes me think of the classic song Poison by Bell Biv DeVoe and I sing the chorus lyrics to myself as “This girl is poisoooooon” which kinda cracks me up.

The first 24 hours after starting the pills and the infusion went fine. Then the side effects started kicking in.

Stupid nausea

If there is even a remote possibility of nausea being a side effect, I will get it. And boy howdy did I. It lasted about 36 hours subsided, came back, subsided, came back… you get the picture. Thankfully I had anti-nausea meds which helped, but made me sleepy.

The second week was better in that I knew what to expect. However, this was the week of my first (and hopefully last) chemo puke. I have to say there was an odd relief to getting it out of the way. Like I no longer had to worry about puking from chemo because I had already been through it.

I was given an anti-nausea patch the next week which took the edge off. I also found out about other ways to control the nausea like peppermints and lemon drops, aromatherapy (keep peppermint oil on a necklace diffuser), sea sick wristbands, and helpful snacks (Biscoff cookies rock for this).

Now the nausea seems to be more manageable. I still feel like crap at times, but I can at least function.

Stupid appetite, or lack thereof

There are times when I just don’t want to eat. Usually it’s because I’m not hungry, which is a pretty common side effect. Sometimes it’s because food tastes a bit odd.

The most extreme example of something I can’t eat right now because of taste is peanut butter. I know many of you who know me well just gasped in disbelief. Until recently, I have eaten Jif creamy peanut butter in some form most of the days of my life. Several weeks ago, I took a bite of my usual scoop of peanut butter at breakfast and was disgusted. It was a sad day for me.

It’s odd what does and doesn’t taste bad. From what I can tell, the taste in the center of my tongue is most affected, which is umami. Thankfully, most chocolate, frozen yogurt, and Pringles still taste good. Ya know, the healthy foods.

Regardless, not wanting to eat makes maintaining weight difficult. Something that seems to be working for me is making sure I consume at least 1000 calories each day. It’s not a lot, but making myself eat helps, even if it is just a Boost shake.

Stupid other side effects

In addition to nausea and lack of appetite, there are other interesting side effects. Right before each infusion, I’m given a steroid. From what I understand, this is to help make the chemo more effective, as well as reduce nausea. The downside is I don’t sleep much on the night of an infusion.

Then there is my poor digestive system. It barely adjusted to being rerouted when I threw at it chemo and side effect meds that potentially cause constipation and/or diarrhea. Some days my gut just doesn’t know what to do, so it is a crapshoot (you know that pun was intended) as to what I will deal with most days.

One of the side effects of my chemo cocktail is hand-foot syndrome. And I got it during the second cycle. It sucked. With every step, the soles of my feet hurt like they were covered in blisters. Fortunately, no blisters actually appeared. The palms of my hands got a bit sore, but nothing like my feet. This side effect in addition to my white blood cell counts dropping caused my oral meds to be adjusted.

Stupid emotional toll

Even thought the physical side effects are a bit rough, the emotional side of chemo is the worst for me. When my meds were adjusted, I felt like I failed chemo. I know this is completely irrational, but it is still how I felt. It’s like I should have been able to stop my body from reacting the way it did or somehow magic up more white blood cells. How? I have no idea.

Speaking of those white blood cells, they are checked before each infusion. Twice now my count has been on the verge of being too low for an infusion. If they drop below a certain level, we will have to pause a week. The thought of this is scary because I immediately think any rouge rat-bastard cancer cells that might be lurking will suddenly multiply and spread with nefarious glee. I have been reminded that I am not an oncologist and should trust my doctor who is.

Fatigue is another side effect that is more of a mental impact than physical. Not having the energy to do things like weed the flowerbed or wash the dishes sucks. Who knew I’d ever really want to do things like that? Needing to take breaks after simple tasks or not being able to make it through most days at work without a nap or three is frustrating.

On top of all of this is the lingering worry of cancer in general. The stress of knowing the grim survival statistics for pancreatic cancer is a bit much some days. I try to not let it get me down, but it’s really frelling hard sometimes. To combat this, I work hard to focus on any positives that come along.

There are actually some positives

The fact that someone thought of chemotherapy in the first place is a big positive. Yes, it is harsh and some people don’t survive it. But for others, it does bring hope. I remind myself of this each time I take my poison pills or sit in the infusion chair.

I’m also super blessed to be in good enough health to deal with chemo and still be independent. Seeing other people getting infusions who can’t drive themselves to the office or walk in on their own makes me realize how fortunate I am to be able to do both.

The chemo I’m on apparently has a low occurrence of hair loss and it seems like I will be keeping my hair. Well, most of it. It’s definitely falling out more than usual, but not anything alarming.

Thank goodness my job was already remote due to the pandemic. Being able to continue working from home right now is a huge help. And having an understanding supervisor and place of employment is a blessing beyond belief. Also, I was able to get a couple of weeks of chemo under my belt before returning to work so I knew what to expect and could prepare to deal with it.

Keep on keepin’ on

As I write this, I am nearing the end of the third cycle. Almost halfway through! I’m anxious to get through the rest of chemo, side effects and all, and get a clean scan in a few months.

Pitter patter let’s get at ‘er!

More pancreatic cancer posts:

• Getting a lung biopsy
• Cancer Possibly Has Returned
• Scanxiety
• My first Whippleversary
• One-year survivor
• Ring the bell!
• Coping with cancer
• Side quest: Pass a kidney stone
• Chemotherapy is weird
• The Whipple procedure recovery