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!

Not What I Planned

My plans came to a halt today. Jarring words, spoken quietly, left me stunned.

This is stage 4 metastatic triple negative breast cancer. Rogue cells have moved into the pleural fluid around my lungs. No curative treatment exists. There is only palliative care (life extending, symptom control). An optimistic prognosis is for one, maybe two more years.

The treatment plan, if Medicare covers it, is Trodelvy, which is a newer targeted immunotherapy for triple negative breast cancer. Intravenous infusions lasting 5-6 hours are on a 21-day schedule. Here’s how the cycle plays out in October: infusion on October 2 and 9. Rolvedon injection (to help produce white blood cells) on October 10. Take a week off and then start the cycle again: doctor appointment and labs on October 22, infusion on October 23 and 30, Rolvedon injection on October 31.

How long will the treatment last? For the rest of my life.

Multiple nasty side effects are possible. Naturally, I hope they will be minimal so that I can some quality of life. If the side effects are too rough on me, a lower dose can be tried. Eventually, I may have to decide on quality versus quantity of life.

I am still in shock. My only hope is in Jesus. I count on him to sustain me through the hard times, as he has in the past. I still believe Jeremiah 29:11. My ultimate hope is in eternal life with him.

                                                                             “For I know the plans I have for you,” declares the Lord,

“plans to prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

 

Still Learning

I learned something yesterday. Actually, two things.

Since the thoracentesis, I have not been nearly as breathless as before. Thus, I thought I could handle shopping at Aldi. (You see, before the thoracentesis, when I was very breathless, I had shopped at Walmart, and it completely wore me out.) So, I did, and guess what? Though not out of breath, I became very fatigued, to the point that I had to rest all afternoon. This was a surprise since in my previous cancer experiences, I did not get fatigued so easily until after I started treatment.

And the second thing, which perhaps I had simply forgotten: Shopping not only wore me out physically, but mentally as well. I was too tired to do the paperwork I had planned to get done. I kicked back in my recliner and dozed or played easy solitaire games.

I will say that this is discouraging because I wanted to get more things done before my treatments begin.

But this morning I was able to deliver the sermon I had prepared, and I am grateful for that.

Just When

 September 25, 2025

Just when I began to hope that the pleural effusion was due to my bronchitis, reality stepped in with the brief statement from the initial cytology report: “Right pleural fluid, thoracentesis - - Positive for malignant cells. - Metastatic carcinoma, compatible with a breast primary tumor”

Now I wait for today’s PET scan results.

September 26, 2025

That was quick! The PET scan was negative, meaning that no growths or tumors were found. That’s a Hallelujah!

Next week I have two appointments with my oncologist. On Monday, I’m going in for a consult. I want to find out what kind of treatment he plans to do, if it is curative or palliative. Then on Thursday, I may have a six-hour treatment (an infusion). I don’t know what follows that.

In the meantime, I’m breathing much better due to the liter of pleural fluid taken out on Tuesday.

. . . And Again?

 My second four-month cancer check-up did not go as planned. Dr. Moussa has ordered a PET scan and a thoracentesis.

Let me back up for a minute. I’ve had a terrible bout of acute bronchitis since the end of August. I’m on my second round of antibiotics, having just finished a six-day pack of oral steroids. Because of abnormal lung sounds, my primary care physician ordered a CT scan with contrast of my lungs back in August. That revealed mild to moderate pleural effusion on the lower right lobe, so she ordered a second scan to take place at the end of September.

In the meantime, I had another follow-up appointment with her (Dr. Frances Horn) last Wednesday, though I felt better than before. I was surprised when she listened to my lungs and immediately said I needed the second round of antibiotics. She asked if I would like to listen with her stethoscope, so I did and was shocked by what I heard: low, loud rumbling sounds that mimicked my stomach when it is busy digesting food. I go in this Wednesday for another follow-up.

So, when I had my vitals taken by a nurse before I saw my oncologist, Dr. Moussa, last Thursday, I was sure to tell her about the scan, and she looked it up for him to see. His concern was immediate. Did I have chest pressure? Yes, on my right side, and I had assumed it was from the mastectomy. Fevers or chills? No. Coughing? Yes. He looked at my arms and said he saw mild edema in my right arm, which neither I nor my physical therapist had noticed.

He said he wanted me to have a PET scan and a thoracentesis ASAP. (Of course, insurance must approve first.) The PET scan will be at OCSRI (Oklahoma Cancer Specialist and Research Institute) in Tulsa, hopefully yet this week. The thoracentesis will be done tomorrow at St. John’s in Tulsa.

Just in case you don’t know what a thoracentesis is: a long needle is inserted into the pleura, which is a lining around the lungs, to extract some of the fluid. Then the sample will be sent to a lab to test for cancer cells.

On Friday, my blood work results were posted on my patient portal. Two of them are not encouraging: my platelet count and tumor antigen count are high.

Is there a silver lining to this story? Well, only that I won’t need the second CT scan since I will be having a PET scan.

I’m still numb with shock. Here are the three scenarios that I can think of, from best to worst:

1.       1, The pleural effusion is caused by the infection in my lungs.

2.     2.  The pleural effusion is caused by lymphatic fluid ending up where it shouldn’t. (Yes, that swelling in my arm is lymphedema.)

3.       3.The pleural effusion is caused by cancer recurrence.

Number 3 is the worst-case scenario. Survival rates for persons whose breast cancer has metastasized into the lungs tends to be measured in months, not years.

Pray with me. Pray for me. Pray for my children, who are devastated by this news. Pray that we will be upheld by the Holy Spirit. (And a p.s.: we are not yet telling the grandchildren.)

After the Bell Rings

Last week I did better than usual after my infusion, even driving on Saturday to pick up my online Walmart grocery order. The crash came Sunday morning after a restless night.

At first, I wondered if I was simply expecting to feel worse, but a complete loss of energy plus dizziness kept me from doing my lymphedema prevention stretches. I shuffled out to the recliner and there I stayed until I went back to bed for a nap later.

The back pain had commenced, so I took a pain pill, which put me into a twilight zone type of sleep: doze for five minutes, wake up, doze again. That’s how I spent the morning. I don’t know how to explain the overall discomfort, but it did not reach the point of pain. That’s pretty much how I spend Sunday and Monday, in a haze.

On Monday I hit a new emotional low and shed many tears after my son did not come through for me on a simple task. I’ve not cried about this cancer once; perhaps, I simply needed the release. I called my daughter, and having her listen to me helped a great deal.

Finally, on Tuesday around 1:30 pm I came out from under the cloud long enough to take a shower, which I had not done for several days because of my poor balance. That helped me so much. The next two days I slept away the mornings and stayed in my pajamas all day.

The bright spot in each day this week has been listening to Fernando Ortega’s album, Come Down O Love Divine. Each song speaks to me, drawing me into worship and praise and reminding me Who is in charge.

The truth about cancer treatment is that once you’re done, you’re still not done. The immediate chemotherapy effects linger on as well as the fraught question: will the cancer come back?

I’ve had several people ask me if there will be a scan now that I’m done with the infusions. The answer is no. The mastectomy removed all the visible cancer from my body, but there is always the possibility that stray cells linger somewhere in waiting. There simply is no sophisticated enough imaging technology to detect rogue cells. Other types of breast cancer have targeted therapies in the form of pills to take to reduce the recurrence risk, but triple negative breast cancer does not.

So that leaves me at the end of cancer treatment with no guarantees. But I do not wish to live the rest of my life worrying about a recurrence. The last song in the album, “Aaron’s Blessing,” repeats the words of Numbers 6: 24-26, which give a promise I plan to cling to:

“The Lord bless you and keep you;
²⁵ The Lord make His face shine upon you,
And be gracious to you;
²⁶ The Lord lift up His countenance upon you,
And give you peace.”

The promise of God’s peace is enough. His peace is not dependent upon circumstances. His peace will carry me through whatever the future holds. Of that, I am sure. 

Last Times

January 8, 2025

Last July and August as I waited to find out if I really did have breast cancer again and for what that would mean as far as treatment went, God gave me inexplicable joy and peace. Yes, some worry and anxiety were sprinkled in as well, but those I never attribute to God, just to natural human emotions.

One example of that joy and peace occurred on the last Sunday of August as I stood before our congregation to preach for the last time for months to come. You would think I would be filled with sadness of last times, especially since I have been so blessed to preach, usually twice a month, since 2019. But instead, my heart bubbled over with joy as I looked out over the beloved congregants who gathered that day and delivered my sermon.

I remember blogging in the fall about the Holy Spirit presence I enjoyed in the summer, assuming it would continue unabated during my cancer treatment. But here’s the truth: it hasn’t. I’ve had to learn again that in my walk with God there are dry spells, though he has continued to bless me with intermittent times of sensing and rejoicing in his presence during the months of my cancer treatment.

I find a paradox: God sometimes breaks in with his love just because he wants to, with no regard to whether or not we are prepared to receive. On the other hand, consistently pressing into Jesus through prayer and the Word allows us to hear and receive him more.

As I head out later this morning for my fourth and final chemotherapy infusion, these are good things for me to think about. I’m so grateful for the feeling-almost-normal week I’ve just had, and not looking forward to how exhausted and sick I will be for the next few weeks. I hope that by mid-February I will regain enough energy to start helping my daughter with some of the transportation of getting the boys to or from school a couple days a week. And then by March, in addition to spending time with newborn Annabelle and the older five grandchildren, I hope to be able to work ten hours a week doing pastoral care, leading our morning prayer Zoom group twice a month, preparing to start up our women’s Bible study again, and preaching my first sermon the fifth Sunday in June, just ten months since the last time.

                                                ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

January 9, 2025

Eight years ago, I rang the bell at OCSRI Tulsa. Yesterday, I rang the bell at OCSRI Bartlesville. My hope and prayer are that I’m done with bell ringing.