So, How Do You Feel?

When you hear "chemo" you think you'll be barfing and bed-ridden and bald and in constant pain immediately after the treatment.  So when I woke up feeling mostly fine on Friday, it was both a pleasant suprise and I felt a little sheepish--Aren't I supposed to feel awful?  Maybe it'll hit in another day or two...or maybe all the steroids and anti-nausea meds they gave me are working really really well.

Overall though, the weekend was very tolerable.  I definitely felt "off" and had several notable symptoms, but nothing horrific, nothing so miserable I couldn't function, and mostly, I felt just a little run down.  I spent most of my time noting how I felt, wondering how I would feel in a few hours or days, and waiting to see how my body responded...and luckily, so far anyhow, I've been pleasantly relieved.

I think because we (Ben played a BIG role in making it possible) intentionally cleared myself of all responsibilities, since I had no idea how I would respond or feel, I was able to just do what I was capable of in each moment based on how I currently felt--true 100% in-the-moment living. 

I typically NEVER operate that way in my regular life -- my set speed is GO with a list of things to do a mile long that MUST be completed by the end of the day.  So, releasing myself of having to "do" anything or expect anything of myself really made me appreciate each thing I *was* able to do all weekend.  

People have told me over and over again that I'm "strong" and "inspiring" and can "fight" this.  I don't quite know how to respond to that.  I didn't choose this or decide to be "brave" and tackle cancer.  I couldn't "pass" on dealing with it--or I absolutely would have!  I certainly don't have any control over how my body responds to the drugs or whether the cancer spreads or shrinks. 

I don't really have any choice but to just let it happen and see what God does with it.  I don't know where it will all end up or what my story will look like.  It's quite possible this could be the most boring cancer story EVER.  But in any case, I'm committed to recording the experience, processing it through journaling, and giving anyone who is interested a behind-the-scenes look at what this *can* look like (because everyone's experience is completely different). 

The Lord will fight for you; you need only to be still.
- Exodus 14:14

As someone who likes to be in control, capable, dependable, doesn't want to be seen as weak or in need, it's pretty clear THIS is the bigger picture lesson I'm going to need to learn through all of this.  


So now, if you've made it this's the less philosophical and more physical, chronological rundown of what days 3 through 6 have looked like for me after my first chemo treatment:

The short version of symptoms I've noticed so far are these:

  • flushed face & chest
  • very dry skin (when normally mine is more oily)
  • slight queasiness, needing to eat every 2 hours or so
  • pressure headache between my eyes
  • fatigue
  • constipation

So, though it wasn't a horrific miserable weekend, of course, life was not completely "normal" either.  For instance, Ben used the main bathroom for the weekend instead of the one in our bedroom, so he could stay far away from any possible toxins released from my bodily fluids.  Every time I went to the bathroom (which is about 35 times a day when you're drinking a gallon of water) it was a whole process -- pee, put the seat down, flush, wash hands, put lotion on hands while I wait for the tank to fill, flush again.  We had instructions to wash towels or sweaty clothes or sheets in hot water after each use.  Whether it's truly necessary or overkill, I don't know, but the instructions were specific enough to scare us into doing it, so Ben's face and hands didn't melt off.  (Although, I'm not sure why I'm not melting away if my sweat or tears could hurt him as much as they say?)

If 100% "normal" energy for me is making it through a 6am to 10pm day, including a high intensity workout, full day of work and family activities in the evening, then I'd put the last several days at the following energy levels:

Friday - 70% 
Saturday - 30%
Sunday - 50%
Monday - 65%
Tuesday - 90%

I was able to eat pretty much anything I wanted, although I was much more interested in meat, eggs, cheese & savory foods than sweet things.  I slept pretty well each night (other than frequent bathroom trips).  And once I found some good moisturizing lotion to deal with my skin issues and some coffee & some ducosate sodium to deal with my tummy troubles, I was doing ok.


FRIDAY (day 2)

Around 6pm, just after we finished dinner, my arm started beeping.  Truly.  Several beeps from my Neulasta shot was the warning that it was about to start dispensing the medicine.  

For the next 45 minutes or so, I could hear a clicking sound coming out of it, and feel a teeny tiny pinch in my arm.  

Then at 8pm, I was allowed to peel it off.  What a wild way to get your medicine! But it worked pretty well, and sure beat going to the hospital again for a shot.   My main concern about the Neulasta shot is the bone and joint pain that some people experience.  After dealing with that kind of pain during my Graves Disease diagnosis, I know how miserable that can make me.  But the initial shot didn't seem to do anything to me that I could notice.  So far so good, on that front (even today, 4 days later).

SATURDAY (day 3)

I'd heard that day 3 is often when all the steroids wear off and the effects and fatigue of the chemo treatment hit.  So when I woke up on Saturday feeling kind of nauseous, with a headache and vert low energy, I wasn't suprised.  

I took 2 of the anti-nausea tablets right off the bat. If I've heard *anything* it's to stay ahead of the nausea.  Then I ate breakfast and slowly moved about the morning.  I had to stop in the middle of making coffee and emptying the dishwasher though (and Ben finished that task for me).  After just a little bit of food and activity, I gave up and headed back to bed at 10:30am and just laid there for a while listening to a podcast with my eyes closed.  

Ben brought me a cheese stick to eat, which seemed to give me enough energy to head back downstairs for a little while, where I was able to make and eat lunch.   And I had just enough energy left over to put some Color Street nail strips on myself & Ayla (thanks to a friend who had dropped them off for us that morning).  Definitely a little "happy" in my day!

But my energy was definitely super-low and after a little while at my computer, when Ben took the kids out to ride bikes, I ended up crashing back in bed.  I tried to watch a show, but fell asleep. I was just completely exhausted.

When I woke up a couple of hours later I felt slightly better, but spent the majority of the evening just sitting on the porch wrapped in a blanket.  That was the big event for the day.

By Saturday night the skin on my face and chest was so dry it felt like I'd been sunburned.  I think because I had been washing my face with my normal-to-oily Cetaphil wash and using the salicylic acid acne medicine I was used to using, it was getting extra dried out.  So, I resorted to the thick stuff--Eucerin on my face.  But it felt SO GOOD.  I just hoped I didn't wake up looking like a pepperoni pizza.

And then I was done.  Day over.  I put in earplugs, my unicorn sleep mask (that my friends got me right after I was diagnosed) and told Ben to leave the lights on and do whatever he needed to do...and I was out.

SUNDAY (day 4)

I fully expected to feel terrible again today, but I actually woke up feeling ok, had slept pretty well, and my face didn't feel like sandpaper (thank you Eucerin).  I did have a pretty intense headache though and it was pouring down rain outside. 

As soon as I was awake, I made my way downstairs so I could get some food in me right away.  I've found that if I don't eat every couple of hours, I start feeling queasy--and once I'm awake, I need to eat pretty quickly before it sets in.  But I had enough energy to do all the normal morning chores (make coffee, feed the cats, empty the dishwasher, make breakfast, etc.

But then, since it was pouring down rain, a Sunday morning, and everyone else was asleep, I camped out on the couch and did some reading.  Eventually Ben, the kids & cats all joined me--and the rain stopped.   I think this was a good example of how I was able to practice allowing myself to just sit still, and not try to "accomplish" anything--and it turned out I enjoyed it.

It's my intent to do *at least* some kind of exercise any day that I feel up to it (and eventually if I can get back to my normal HIIT workouts, that would be FANTASTIC...but we'll see).  Since I'm still healing from my port surgery and high intensity and weights aren't the best idea, I decided while it was dry to go for a walk up at the park behind our house.

While we're on the subject -- here's how my port looks 9 days later -- itchy and weird still, but not painful.

The walk was *really* nice.  With COVID keeping everyone home, our park is like our own private walking track, and since I wouldn't be allowed to go to the gym, it's the next best thing.  I ended up walking about 2 miles (slowly), but SO enjoyed the cool fresh air and being able to move my body for a while.

The rest of the day was pretty low-key, but I felt really good and was able to do some laundry and cleaning, until about 5pm, when my headache came back while we were watching our church's worship service.  After a little dinner though, I was back to feeling good. 

I had truly expected to be out of commission completely for at least the 3rd to 5th day after chemo, so I was really surprised when I felt as good as I did all day on Sunday.  Maybe all the water I'm drinking is helping....

MONDAY (day 5)

Monday I woke up feeling even better than Sunday.  So maybe the worst of this round is over? And it wasn't so bad.  I did wake up with a headache, but tylenol seemed to help that.  I tried to start the day with some work at my desk, catching up on emails and little tasks that I needed to do.  Even a Monday on quarantine with no "work" to do seemed to have an awful lot going on!  

My sister-in-law Janel came by with some grab-n-go lunches for the kids, and while she was here, we went up to the park to walk together and ended up doing 2 1/2 miles.  She was very kind and wore a mask the entire time to keep me from getting any germs.  I tried to wear mine, but couldn't breathe, so we decided as long as she had one on, we were ok.  Years ago, we used to run together several days a week, and it's been a long time since we've gotten to do that!  

I cleaned both bathrooms (with some rest inbetween) helped Paxton with a video call with his cubing friends, and spent a lot of time hanging out on the back patio, because the weather was perfect.

And around 2pm, my friend Fran came by with several books for me to read.  I set up a 6 feet away chair for her and asked her to stay and chat...and we had the best time visiting!

Our friend Melissa brought us an amazing "breakfast-for-dinner" treat, which we ate outside and then I spent the rest of the evening working on blogging, showering and watching Tiger King.

The only other "symptom" I noticed today was a spot on my inner cheek in my mouth that started feeling like a sore--kind of like I had bitten the inside of my cheek.  It wasn't painful, but I could feel it growing throughout the afternoon.  Hoping that doesn't turn into anything...

TUESDAY (day 6) 

Today, I woke up feeling *very* normal.  So normal, I was able to do a Burn workout, shower, get dressed in REAL clothes, put on makeup, and do all my regular things. 

I won't count my chickens before they're hatched, because every day is a new symptom and adventure, and I've heard this is a cumulative process that gets worse and harder with each treatment.  But round 1 wasn't too bad at all.  

Also, you may have noticed, I'm not fixing my hair.  I think I'm subconsiously trying to detach myself from it before it detaches from my head.  I seem to think if I view it as a hassle or a burden then I won't miss it so much.  And I'm trying to get used to seeing my head without a mane of hair around it.

I'll let you know how that works for me in about a week...

2 comments so far:

Franchesca Wilkes said:

I loved spending time with you this week! Love you tons!

Robin Tholen said:

What a blessing to read! Praise God for the way treatment #1 is going, and how He has provided. Your family and friends have been exactly what you needed, and it sounds Iike all of the advice you’ve been given and prep work you’ve done is paying off! That verse is perfect, and I hope you enjoy the stillness and living in the present while God fights for you. Sending love and hugs from Ohio!

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