Setback

 (written on October 22)

Everything went well at my appointment with my oncologist, Dr. Moussa, today. I left thinking it would be business as usual tomorrow, getting my infusion here in Bartlesville. Several hours later, a call from his nurse changed all that.

Evidently, he took a closer look at my lab work and saw that my liver enzymes are high enough that he wants to give my liver an extra week’s rest, delaying my next infusion to October 30 at a reduced dose.

The news shook me badly. Delaying and lowering dosages spells trouble. A lowered dose is not the optimal dose. What that means for my survival remains to be seen.

Since I am suddenly facing a new normal, I am hoping at the very least that I will have more energy during treatment. The first 21-day treatment cycle has been eye-opening. Despite my thirty-year history of fibromyalgia, I have never experienced this level of ongoing fatigue and weakness.

Though I’ve pretty much given up driving because it is an energy sapper, I decided to drive to Walgreens to pick up my two prescriptions: nystatin for my sore and tender mouth, and Levaquin (a high-power antibiotic) in case I run a fever again. You see, driving alone has long been my good time of prayer, and I needed to pray. That brief excursion helped me regain my focus.

No matter the twists and turns of this cancer, I rest assured in God’s faithfulness. But sometimes, like today, I become afraid.

October 24 update: Good news is that my tumor marker showed a significant decrease—back into normal range!

Picture This

(written October 20)

A fat bright green caterpillar with black stripes chomps down fresh dill weed to its hard stem and immediately starts on the next fresh sprig. Swaying slightly as it eats, it methodically works from top to bottom, top to bottom. Its appetite is endless.

At the right time, it fastens itself to an empty stalk with fine silk threads and weaves its cocoon around its fat green body. Then it goes dormant. On the outside no change is apparent; in fact, the cocoon looks dead. But inside, miraculous changes gradually occur, transforming the caterpillar into a butterfly. Again, at the right time, the new creature inside the cocoon begins to wiggle and gradually splits open the cocoon.

After a time of struggle, a black form emerges. Crawling out of the cocoon, it finds a new place to roost upside down. Its wings descend and, over a space of hours, they fill out to their full glory, revealing a black swallowtail butterfly.

How do I know this? My son, Joseph, collected dill worms in his childhood years. Every summer, our house would be full of the smell of fresh dill, the food supply for his caterpillars, each one kept in a quart Mason jar with a special plastic lid that had small holes to allow the worm to breathe. Sometimes he would see the butterfly’s emergence, hold his finger out for it to attach to, and watch as its wings filled out, dried, and grew strong.

Last November, as my daughter, Dana, turned to prayer and journaling to seek out God during my first recurrence of cancer, God answered her with a picture:

I see my mom with butterfly wings and hear, “A transformation is taking place. I know the right time to bring her home, and My provision for you will be abundant when that time comes.”

Then she quoted Psalm 33:20-21.

Our soul waits for the Lord; He is our help and our shield. For our heart rejoices in Him because we trust in His holy name. 

Dana recently shared this journal entry with me. At the time, I was worried about my death—how it would affect my family—and fearful about its timing. Her journal entry was a needed reminder that God has everything under His control. I can trust Him completely for his timing and his mercy.

These verses (Luke 1:46-47a, the opening lines to Mary’s Magnificat) just popped into my mind. I praise God for his great mercies:

“My soul magnifies the Lord, and my spirit rejoices in God my Savior”

Who Knew?

It’s been fun to have some hair—a ½ inch buzz cut—for a few days. Last night, when three-year-old Elijah saw me, he asked, “Why did you cut your hair?” I had to think quickly for an age-appropriate answer. Somehow telling the straight-out truth (that I wanted to have a couple extra days of some hair at least) didn’t seem like a good idea. So, I answered him in terms he could understand: “Because I wanted to have hair shorter than yours.” He immediately accepted that explanation and went on to the next thing, which was watching a Mickey Mouse video and doing Mickey Mouse moves.

In the middle of the night, I woke up to a hairy pillow. I changed it out, and this morning I woke up to another hairy pillow. Who knew that ½ inch of hair could make such a mess? This morning, I vigorously scrubbed my head with a soapy washcloth, then with a wet washcloth, and finally with a rough bath towel. I succeeded in removing less than half of the remaining hair. I still feel like I have hair in my throat. And now I have bald spots on the sides and a round bald patch on the top of my head. I don’t mind being seen in public like this, but I do mind the thought of waking up tomorrow morning with hair in my throat.

And one more thing, as Detective Columbo used to say. I may need to retire my hot pink 40-ounce Stanley mug. Suddenly, after months of no problem, I’m tasting the stainless steel. I hate to give up the convenience of keeping my beverages cold for hours, but the metallic taste is nasty.

Now that I’ve made my complaints, it’s time to kick back in my recliner and rest awhile.

This Week

Monday evening, unknown bacteria got past my low white blood cell count, causing my temperature to rise and me to feel lousy. I contacted the on-call OCSRI nurse, and she advised me to start the Levaquin prescription that is filled at the start of cancer treatment for just such an occasion as this.

It took several hours to kick in; meanwhile, my temperature rose from 100.4 to 101.9. Let me add the word “weak” to lousy. It was a long night. The extent of the weakness plus my feverish brain led me to think that this could be my new reality. Fortunately, I was wrong. By Tuesday, I was back up to my present low energy level, enough to warrant an evening with my grandchildren (and their parents, of course).

Now let me indulge in some complaining: the right-side space key on my ergonomic keyboard has suddenly stopped working. (I suspect that one too many crumbs have lodged beneath it. Yes, I am guilty of eating at my computer.) It is terribly annoying to try to use my left thumb on the spacebar, so I have disconnected my laptop from the monitor and moved to my recliner. I am not used to this laptop keyboard.

After the kids went to bed, Dana, Shawn, and I had another one of those end-of-life conversations that have become our new normal since my stage 4 diagnosis. I was happy to tell them that I had figured out—and typed up—what I would like for my memorial service. It is interesting to me how calm and practical I am discussing such things. Perhaps this is a lovely side effect of being safe in Jesus’ arms.

Shawn brought me home around 8:30 pm. I have pretty much given up driving because I prefer to spend my limited energy elsewhere.

Remembering that my phone had dinged earlier with a notification, I checked it. What an exciting surprise! My brothers will be visiting me for a weekend soon. (John lives in Washington state and Bob lives in Kentucky

p.s. This morning the hair loss began.  It is such a messy process. Time for a hair shave. I’ve had my hair back after the second cancer go-round just long enough to have one trim and one cut. Oh well. I have thoroughly enjoyed the gray this year—I mean, when you wait until age 70 to finally get a good amount of gray hair, you’ve got to enjoy it! I am hoping, though, that I keep my eyebrows and remaining eyelashes.

October 4 Family Picture Day

Annabelle, a week short of 7 months old

Benjamin, age 16

Elijah, age 3 (turning 4 in December)

Ava, age 7

Joelle, going on 13 (at the end of February)

My two did not inherit my shortness!

Josiah, age 10

I've been singing "Patty Cake" for about 15 years, always just after "The Wheels on the Bus"!

 

Infusion Day #2

Because I am somewhat technologically challenged, it will take a while before I get the family pictures I told you about last week posted here. They are already on Facebook, and I’ve gotta say that they capture so much personality and love.

My second infusion day was more than an hour shorter than the first because the drug protocol says after the first one, if I tolerated it well (and I did), it could be given over the course of an hour instead of two. (I hope you can untangle that sentence.)

However, I was there at OCSRI Bartlesville from 9:30 am to 2:30 pm. Why so long? Starting out, there was a fifteen-minute wait in the lobby. Once I was called back, there was the weigh-in (and I am NOT about to reveal my weight, even though it was a pound less than last week). From there, I chose a reclining chair in the treatment room. Today, the room was close to full.

Thankfully, the nurse succeeded with the I.V. stick on the first try on the back of my left hand. Not comfortable at all, but I have crooked veins in my left hand and arm that like to roll. I don’t offer my right arm for an I.V. because that is the side my mastectomy was on. The plus today was that the nurse (will I ever learn all the nurses’ names?) was able to do the blood draw from the I.V. as well. She took my vitals, and then I waited. And waited. For over an hour.

There were two possible hold-ups: first, the labs had to be processed to make sure I was good to go. Second, there was some sort of communication glitch to resolve: for reasons unknown, the infusion orders were at the Tulsa OCSRI clinic and had to be transferred over. Let me say this: OCSRI is a topnotch medical facility. I do not begrudge them the occasional scheduling issue. That I have kept my oncologist, Dr. Moussa, who works at the Tulsa and Stillwater clinics but take my infusions in Bartlesville creates some processing errors at times.

Since last week, I have purchased headphones for my Kindle, so it was nice to try them out.

Finally, the infusion process began. I think that the various I.V. bags each take 20-30 minutes until the last one. First up was Pepcid AC, followed by steroids, then an anti-nausea drug followed by Benadryl, and at last the Trodelvy. For each I.V. bag change, a nurse comes up, asks for my name and date of birth, unhooks the current bag, and replaces it with the new one. Then she works her magic with the machinery, setting flow amount and time, I believe.

I checked my email, played a couple games on my Kindle, read several chapters in Matthew (I’m reading straight through the gospels right now in the English Standard Version.), browsed in Facebook, ate my light lunch of plain Greek yogurt with frozen blueberries and strawberries followed by a snack pack of mini crackers and cheese. And, of course, kept drinking my 32 ounces of Stur. (Try a Google search. It is a naturally flavored water sweetened with monk fruit and stevia, zero calories and delicious.) About twenty minutes after the Benadryl drip started, I got oh-so-sleepy and dozed off for a while. I sure hope you aren’t bored yet.

Since last Thursday, I read up some more on Trodelvy. Modern medicine is so amazing. Trodelvy targets cancer cells, invading them and releasing a chemotherapy medicine. That is, obviously, the simplest explanation. It leaves out all kinds of information I don’t understand. Trodelvy is the brand name. I cannot spell or pronounce its two-part very long name. What that means for patients is that the focus of the anti-cancer action is on the actual cancer cells. However, there is some residual action on any fast-growing cells. What that means is that I may lose my hair again. And the side effects from the first treatment last week were not nearly as bad as what I experienced in chemotherapy treatments in 2016 and 2024-25.

But I must backtrack to the issue of my hair. You see, I have never colored it and have been waiting with great anticipation since age 50 or so for some gray or silver or white to appear. Now I am 70, and the gray/silver finally came in this year. I’m really enjoying it and am sad that it may fall out.

Okay, I have been very wordy. It’s the teacher in me and, who knows, possible the steroids. It’s getting close to the time to take a half-dose of Zyprexa, which is better known as an anti-anxiety medication for various mental illnesses. In cancer treatment, it proves to be an excellent anti-nausea med. I found out last week that the full 8 mg dose made me very groggy with some dizziness and being off-balance for 24 hours. It is prescribed for only four days, starting on treatment day. Hopefully the half-dose will be sufficient to ward off nausea, though I purchased a purple cane this week just in case . . .

 

Picture Day

Today (Saturday) was a little worse. I’ve been shaky, off-balance, and slightly dizzy. It’s been a low-key day.

However, this became a fun and joyous day at 3 pm when the professional photo shoot began with my daughter’s family. We were all color-coordinated, thanks to Dana, in light blues, denim, pale green, and white. Her color choices were fortunate for me due to the single light blue and white three-quarter-sleeve blouse that I have. I paired it with light denim jeans, light blue sandals, and navy earrings. 

Let the photos begin! First were the parents with children’s shots; then, I was added. What followed were pictures of me with all my grandchildren, and then with each one. We ended the session with a picture of Dana, Joseph, and me.

And everyone was well-behaved. That is a lot to say for six children ranging in age from 6 months to 16 years, especially with two who have special needs.

As the grandma/grandchild pictures were taken, my heart was full. I thought about my family cherishing these memories when I am gone.

And the bonus? That I still have my hair, which might start falling out in the next couple weeks.

 

 

Catching Up

 My previous blog was about my appointment with my oncologist on Monday, so I won’t go over that again, except to say that I shared the news over the phone with my daughter later that day and my son in person. Joseph had been hoping against all hope that this cancer thing would turn out to be nothing much at all, so the reality hit him hard.

 

Tuesday evening, September 30, was the day my daughter Dana, son-in-law Shawn, and I planned to tell the kids about my cancer recurrence. The conversation was directed to the two, Joelle (12) and Ava (7), who could understand. Benjamin, who needs extra sleep, put himself to bed. We had to send Josiah to bed because he was in one of his happy, wild, and LOUD moods (remember, he has autism). We couldn’t hear each other while he was jumping around and laughing. That left Joelle, Ava, Elijah, and Annabelle. Naturally, at 6 ½ months old, Annabelle would not understand a thing and was content in Dana’s arms. Elijah, who is going on four, walked around the whole time. Dana told me the next day he asked her “Grandma sick?”) so evidently, he picked that much up.

We told them everything in simple terms, even that I might die within the next few years. And we listened to their questions and answered them the best we could. Their tears flowed, Joelle’s silently and Ava’s at top volume. It is hard to understand what she says while sobbing at the same time. Dana had to interpret for me the very unexpected outburst: “I’m in the pit of despair!” Not exactly what you expect from a 7-year-old! Dana has been reading the Anne of Green Gables books to them, and that was something Anne said.

 

It was pure relief on October 1^st to meet for the first time with Kinder Shamhart, Attorney-at-law to get my will started. I hadn’t realized how heavily not having a current will has been weighing me down.

 

Yesterday, my first treatment went well. I wished out loud that I had a port so my left arm would not have to endure so many IV sticks. One of the nurses picked right up on that and called my oncologist to request an order. Now we are waiting for insurance approval before scheduling that at Ascension St. John in Tulsa.

Treatment days are 5-6 hours, with various medications given in a certain order. I may have part of the order mixed up, but here goes: steroids, anti-nausea medication, Benadryl, and Trodelvy (the immunotherapy drug). About 20 minutes after receiving the Benadryl, I got very sleepy and slept in spurts during the final couple hours.

After Bev brought me home and I had a small snack, I fell fast asleep in my recliner around 4 pm. It was such a deep sleep that when I woke up and the clock read 7, I thought it was 7 am! Even though I wondered why I had slept in my recliner instead of my bed and had not changed into pajamas, I went ahead and ate breakfast and took my morning meds. I was still under the delusion it was morning when my daughter called at 7:30. I was surprised she was calling so early in the morning! She reminded me that I had asked her to call after the girls’ Thursday dance class. Oops!

The problem with taking my morning meds in the evening is that they include a decongestant that wakes me up instead of putting me to sleep. Thus, I did not sleep very much last night. It’s a good thing I have no plans today except for staying at home and hopefully napping! The good news is that I am feeling fine so far. My prayer is that the Trodelvy works exactly like it is intended to work, giving me a quality of life and more time.

P.S. I took a nap after lunch and woke up at 2 pm not feeling so fine anymore, but now it is 8 pm and I’m doing well. Thank you, Jesus!