fibromyalgia flare + infusion side effects

make a line drawing

of your body to contain the pain

and then fill it in

 

zig-zag line stretching from ear to ear

is the buzzing of tinnitus

 

two rows of half-moons with the straight lines on top

represent dull pain behind the forehead

 

a slide from the back of neck splits in two—

spreads out to each shoulder

and continues to the upper back

the dark shading on the sides of the neck

identify intensity

and gray out to aching of the upper back

 

draw your spine line

with a small gray box on T 9-10

for the intense ache there and

another on L 2-3 (I believe)

 

copy a frowning face emoji

on the abdomen for discomfort

 

a wide path from shoulders to elbows

demarcates muscle tension

on the right arm only

make a squiggle from elbow—make that two—

one extending to the end of the pinkie

with electrical fire needles

the other knifing through the carpal tunnel and wrist

 

your fingers

have grown into fat sausages

that do not like to bend

draw swirls that threaten to grow outside the lines

to burst the skin

 

 create thick lines down the centers of your legs

to indicate their heaviness

and wobbly circles in the knees

 

finally spikes within toes

show the sharp ache of arthritis

 

and now you’ve sketched my pain

 

oh, I forgot my sluggish brain

(which has kindly provided a temporary clear space for writing)

it wants quiet rest and dozing into dreams

maybe draw grey clouds behind the half-moons

 

this, too, shall pass

after an hour one Tylenol #3 partly erases the pain

sleep and tomorrow I hope will erase

the rest of this body pain map

 

*I wrote this yesterday and am glad to report that today I’m only dealing with fatigue and the usual brain fog, of course, today.  Finding a way to describe my pain helped me deal with it.

 

 

 

 

 

What About Fear? (written May 31st)

I read a lot of cancer blogs on Facebook. A recurring theme is fear: before and after treatments and scans, daily fear, fear of recurrence. There is a lot of anxiety around cancer and rightly so. It upends your life, causes pain and suffering and trauma, and is unbelievably hard.

So why am I not afraid most of the time? My nature is to worry and be fearful. And there are times when I do get anxious/afraid, but those seem to be the exceptions rather than the rule.

I know why I am not afraid. Because of God. I don’t really know how he keeps me from being fearful about cancer. But I am immensely grateful.

The first time I found out I had cancer was in May 2016. God took that opportunity to bless me with joy. I remember sitting on the edge of my bed, listening to music, and weeping with joy. Strange reaction, right? I was not happy about the diagnosis, but I was filled with Holy Spirit joy.

Admittedly, when I learned the specifics (Stage IIIb triple negative breast cancer), I was initially very afraid of both the cancer and the upcoming treatment: chemotherapy, lumpectomy, radiation.

Early in the chemotherapy treatment cycles, I went to a worship service with my daughter. Someone prayed for me and confidently declared that I would not ever have a recurrence. I trusted that and never worried about the cancer coming back.

And it didn’t—until the summer of 2024. I recognized the signs early, got the diagnosis (Stage IIa triple negative breast cancer), and then had a mastectomy followed by four rounds of chemotherapy. I read the pathology report from the surgery and noted I was at high risk for recurrence. I decided I did not want to waste my life worrying, and I didn’t.

The recurrence came in the summer of 2025, disguised as a pleural effusion. It was the same cancer but only in the pleural fluid. And terminal (Stage IV). My oncologist started me on a palliative care treatment that is working brilliantly to ward off more cancer and extend my life.

No one should ever feel bad about having anxiety and fear alongside cancer. That is a normal response. I hope that when I have written about not being afraid that it does not put off those who do fear. I am simply thankful that God has given me peace and joy that conquer fear.

Blessed is the Lord;

He carries us day by day

God our salvation

 (Psalm 68:14, New English Bible)

Just What I Needed

 It’s been a rough week. Infusion side effects have been stronger and lingered longer than I expected.

The intense scattered, buzzy brain fog did not clear until Monday. Tuesday evening, I thought I could handle a brief Walmart run, so I went. The moment I walked into the store I realized it was not such a good idea: I was totally wiped out by the time I got home less than an hour later. Wednesday evening, I needed to pick up the 12-hour decongestant that helps keep my pollen allergies somewhat under control. Walking into CVS told me I was pushing my limits again.

It feels like these side effects are worse than usual, but I’m not sure, except for the brain fog accentuated by a constant, lout buzzing tinnitus. It hasn’t helped that I’m not sleeping well.

This morning, I did a second round of music listening, changing out Fernando Ortega’s album, Come Down, O Love Divine to The Shadow of Your Wings. I turned the volume down a little lower than usual to accommodate my sound sensitivity. I felt washed and refreshed by God’s gentle and generous love.

When I finally got up for the day, I realized that I needed to scrap my plans to get out this morning to pick up a few groceries at Aldi. My body tells me I need another low-key day.

So, here we stay. I’ll do a few ten-minute tasks around the house throughout the day (my equivalent to gentle exercise), but nothing taxing. The tinnitus continues. I am bone-weary and depressed. But I am also refreshed by God’s grace, which is just what I needed.

Scattered

Yesterday was infusion day.

Scattered is my word for today. My thoughts flit around, never staying on one thing very long. Some days I can focus on the lyrics of the Christian music I listen to, but not today. I’ll catch part of a verse and then, before I know it, my brain has wandered off again to some miscellaneous stuff.

I’m glad that the car shopping business ended last Thursday with the purchase of a 2014 Ford Fusion from Ron Tate Auto Sales. It had been an Oklahoma City government car, which meant excellent maintenance. It’s a dream to drive, and I’m especially grateful I did not need to take out a loan.

I get a little down in the days before an infusion, knowing that I’ll have a week of not feeling well enough to drive or do much of anything. It is awfully nice to have the next two weeks of being able to drive and get out of the house most days for a few hours at a time. So, I look forward to that.

And I am so very blessed that so far, this third round of cancer is so much easier than the first two.

 

Getting the Hang of It

Perhaps I am finally getting the hang of it.

Yesterday was my infusion. Today I am fatigued, both body and brain. I’ve had a long day alone at home, which is what I needed though not exactly what I wanted.

But today, the “hang of it” was moving around more. Besides the usual time in my recliner, plus a 1⁺ hour nap, I did little things that took less than five minutes before going back to sit. You know, putting things away, taking care of the trash, starting the dishwasher. I even took a walk most of the way down the block. There was no strain, just the gain of feeling like I was accomplishing something.

The brain fatigue seems worse than usual, though it did not keep me from Bible reading/brief journaling. And it is not keeping me from writing this blog post. But now I am ready to return to my recliner.

Catching Up

A couple surprising things happened last Monday.

Let’s start with the red pickup rental. Somehow, over the weekend of not going anywhere, my fear of driving the truck disappeared. However, I still wanted to return it for a few reasons. One, I had to pull myself up by the steering wheel to get in. Two, it barely fit in my garage. And three, its gas mileage was not great by my standards.

So, I returned it, exchanging it for a 2025 Toyota Rav 4. The car rental place here is a small operation that appears to do a brisk business, so there was no choice on my part but to accept what was offered. I would have preferred a regular sedan or compact, but at least I’m comfortable driving an SUV, and it gets good gas mileage. However, it presented a problem that I reported the next day: at 49 mph, it shimmies rather badly. Because of the amount of dried mud on the frame inside the back doors, I wondered if the previous customer had driven it in some rugged, muddy conditions. But since I was not offered another vehicle, I’ve simply kept the speed down. Not a problem except for the drive out to my daughter’s house, which involves a stretch of two-lane highway with a speed limit of 65 mph. Fortunately, there was not much traffic the two times I went there—just a few vehicles were anxious to get past me each time.

The second surprising thing is that on Monday my pre-stage IV cancer energy level suddenly returned. I woke up that morning feeling normal. I measure my energy by how much I can do in a day. Remember that after my first infusion in October, I chose not to drive because it used too much of my energy. Eventually, I came to the point that a week after an infusion, I could do a brief errand most days. And now? Well, I’ve driven my son to and from work each day, plus doing errands, even grocery shopping alone. On Thursday afternoon, I hit a wall, so to speak, and suddenly became exhausted. So, I rested up the rest of the day and took it easy on Friday as well. I was back to this new normal by Saturday morning.

And I expect to stay there until I have my next infusion this coming Thursday. Then, I’ll hang around at home for a few days to a week until the side effects subside. What a beautiful gift it is to be able to do normal, everyday things again at my former pace.

  

Overwhelmed

Forty-five years ago, I sometimes drove my husband’s truck. If my memory serves me right, it was a 1962 Chevrolet, manual transmission. Obviously, no power steering. I even managed to drive it when close to nine months pregnant. It was a close fit, with my belly touching the giant steering wheel so I could reach the pedals. No problem.

Yesterday, though, picking up a rental vehicle just about did me in. State Farm had requested a sedan, but Enterprise gave me a “small” truck, saying that was all they had. And not just any truck, and certainly not “small” by my reckoning. It was a brand new (the odometer showed less than 400 miles), bright red Nissan Frontier. Anyone else would be thrilled to drive it. But not me.

It did not help that rain was pouring down right after I drove it off the lot. I thought I would be okay. But in just a few minutes I was panicked. This monster of a truck was simply too big for me to ever feel comfortable driving it. Within a few minutes, I was ready to take it back. I should have done so; after all, there were twenty minutes left until the Enterprise office closed for the weekend. (Now, who has ever heard of a car rental business—in fact, the only one in Bartlesville—closed on weekends?) But I was already late for picking up my son from work. And I quickly decided that Joseph would not drive the truck—he’s only had his license for a couple years and has no truck experience.

By the time I got home, I was pretty much an emotional wreck. And then I had to get it in my garage. It barely fit. By the time I turned off the engine, I had decided that the next time I would drive it would be Monday morning to return it and request a sedan. So much for the in-person car shopping I had planned to start over the weekend.

I am scared to drive that monster truck again. Afraid I will do something wrong and get a scratch on the gleaming surface. Or that it will hail, and I will be liable for the damage (yes, that is the policy). I’ve lost my nerve.

I’ve spent the day relaxing. I’m over the flu, and the side effects from last week’s infusion have subsided. I’m resting up for Monday morning’s drive back to Enterprise. There is no way I am going to drive that truck to church tomorrow, especially since thunderstorms are in the forecast.

Maybe it’s kind of weird that having stage IV cancer does not overwhelm me, but the prospect of driving that truck does. I’ll be in the market for a compact or a subcompact car.