This Weekend

                Grief looms large after the wonderful visit from my brothers this weekend. We filled the time with so much conversation about anything and everything. What I cannot fully grasp is that this may be the last time I will ever see them.

                That they came the distance to see me means more than I can say. That our time together as well as our time with my family here was so natural and familiar fills my heart with joy. It was perfect.

                It turned out to be a blessing that I have not had treatments for the past few weeks because I had enough energy to spend the whole time with them. In the weeks to come, I will ponder how much or how little palliative care is worth it. I don’t know the answer yet. How I respond to reduced-dose infusions—my level of comfort and energy plus my liver’s response—will provide the answer.

                Life and family relationships are so very precious. I would like to be around another ten years or more to nurture and enjoy them. God is the only one who knows how long I’ll stay around. My heartfelt hope is to make the most of my time. This weekend was one shining example of how beautiful that can be.

                So, Bob and John, no matter what, I will be okay. Thank you for the gift of presence you gave me this weekend.

A Little Break

 I guess you could say that I’m on holiday. From infusions, that is. My liver enzymes are still high, so I did not have a treatment today. That’s two in a row I’ve skipped. Maybe next week . . .

I didn’t mind so much this time, I guess because I’ve adjusted to the idea that sometimes the schedule may need to be adjusted to allow for my liver to recover. Yes, of course, I fully realize that taking a break from killing off cancer cells is not optimal. But the advantage is having a bit more energy.

Now, mind you, I’m not doing marathons or housework or walking much. But at least moving from room to room does not wipe me out. Plus, having this bit of energy will make for a nicer visit with my brothers this weekend.

On Monday (Oct. 27), my Power Port was installed, a minor outpatient surgery. It seems to be a little bulkier than the port I had back in 2016. It allows for fast contrast infusions for whenever I have a CT or PET scan again. And I am happy that my left hand will no longer be the site for I.V.s or even blood draws. The added benefit of that surgery is that I’m not supposed to lift anything heavier than five pounds for the next week or so; there go any household chores I might be tempted to do. But, then again, I must give up the lovely habit of picking up granddaughter Annabelle for the time being.

 

 

 

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"!