This Week

This week I’ve unexpectedly developed the dreaded moon face. In other words, the steroid given in every infusion has caught up with me. My face has become quite round. Why this has happened now (two weeks out from my last infusion) and in just a couple days is a mystery to me.

I had hoped that with the infusions reduced to once every three weeks since March, I could avoid moon face. Alas, not so.

Doing a little Internet research, I discovered that steroids also can redistribute fat to the belly. That solves the mystery of why my belly keeps looking bigger even though I have not gained weight. (I suppose that one perk of having cancer is that my oncologist and primary care doctor don’t want me to lose weight.)

Sometimes I wish I could go incognito with my cancer, but now I see it would take more work and discomfort than I am willing to endure. Wigs are uncomfortably hot. Plus, since my eyebrows and eyelashes are virtually nonexistent, I would need to draw on eyebrows and see if fake eyelashes would fasten to my eyelids. That would mean wearing makeup to avoid looking totally ridiculous. Too much hassle.

Since it is obvious with my hats that I am bald, I may yet get brave enough to be bald in public.

Several weeks ago, my four-year-old grandson said with the certainty that only young children possess, that I was not a girl. I assume he came to that conclusion because I am bald. On the other hand, he regularly tells me that I am beautiful. And I found out last week that he thinks I am five years old! Of course, there was the time that he patted my tummy and said “Baby?”

No, baby, but I’m holding on to the idea that bald is beautiful!

Complaints and Prayer

 Recently, I realized that I have been receiving chemo/immunotherapy for eight months. That is twice as long as the chemotherapy I had with either of the two previous triple-negative breast cancers.

Truth be told, I am tired of having cancer—though I hasten to say I am very thankful that the treatments are working so well. Here’s what I’ve noticed so far.

I need a full week after my treatment devoted to rest. I’ve learned that the best way to handle those days is to stay home and, as I can, do a few little 5-10 minute tasks each day, things like putting dishes away or starting a load of laundry. That at least gets me moving more and makes me feel like I’m accomplishing something. You might think that I would be reading books, but my concentration level usually is not up to that.

Then, during the two weeks before my next treatment when I’m feeling better, I try to get out of the house every day, which usually means short errands. And I love being able to drive myself over to see the grandkids. (Dana and Shawn are good about picking me up otherwise.)

In addition to getting fatigued easily, I sometimes need sensory time-outs resting in my quiet, dark bedroom.

Now, those are the general guidelines. Sometimes a surprise pops up, like not feeling good on a day I am “supposed” to feel good. Or unexpectedly and suddenly completely running out of energy.

Though eight months is a long time, I hope for a much longer time to live with cancer. Yet, the limitations do bother me at times.

One morning last week, I was reading Psalm 80 and really liked the line, “O God of Hosts, restore us.” So, I made a little change and wrote a prayer, which I am revising and editing as I copy it here:

O God of Hosts, restore me. I am tired of cancer. I am tired of my limitations and same old routines every day.

O God of Hosts, restore me. I miss clarity of mind. I miss being able to focus as well as I used to. I also miss being able to move freely, such as taking a walk longer than a block to enjoy the outdoors.

O God of Hosts, restore me. Help me discover new patterns of living within my limitations that are life-giving.

O God of Hosts, restore me. Help me live into Your presence and purpose throughout each day and appreciate anew the gifts of the present.

O God of Hosts, thank You for life itself!

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)