Feelin' Good

Three weeks just disappeared. At least that’s what it feels like now. The weeks themselves seemed slow, and now here comes my infusion day on the 17^th.

This go-round was the best in quite a while. On Sunday the 6^th, I suddenly got some energy back, which was a very pleasant surprise. And at that point, I could really see the benefit of my Visible health app. During the first week after my infusion, my heart rate spiked whenever I got up from my bed or recliner. It would stay in the “exertion zone” even while I was reclining in my recliner. That showed me how hard the treatments are on my body. However, once I hit the feeling better days, the old heart rate settled down.

With a bit more energy came some motivation, and I’ve spent time just about every day on decluttering. I have what seems like mountains of journals, poetry, and photos to purge. (They fill up an antique storage cabinet and much of one closet.) After reading my diary from 6^th and 7^th grade and then an old three-ring binder of poetry from my early teen years, I was ready to take a break. Oh, the many crushes of junior high years followed by the angst of freshman and sophomore years. All that got tossed. I had hoped there would be some decent poetry, but it was all pretty awful. To put it bluntly, I got sick of my teenage self!

So, I moved on to a storage bin that had been taped up since 2009. It turned out to be things of my sister’s (who died in 2009) that I wanted to save. The photos were a mixed lot. I tossed the many photos Anne had taken of her house that she had built in the early 2000’s: the lot clearing of some trees, the foundation and framing, and the woods around. There were even multiple CDs of Kodak photos that I assumed were more housebuilding photos. Without a means of viewing the CDs, I said, “Oh, well,” and added them to the box of throwaways. But there were also pictures from our childhood that I kept for the meantime, at least, not knowing if I will discover duplicates in the photo albums and stray pictures that are stacked on the top shelf of the closet.

I also looked through the many oncology reports Anne had saved from her three years with recurrent ovarian cancer. And then I went on to her elementary school artwork, her grades and college transcripts and awards and diplomas. I even tossed the large certificate of her master’s degree in microbiology and immunology.

Today I am finishing the reading of letters she kept from me, our brothers, and our mom. It’s like spending actual time with family, reading the earlier versions of ourselves. I read and I reflect and I toss. The storage bin is now empty, and I will choose another bin or box or album to work on next.

Where does this leave me? Grateful to have my family right here in town. Once my brothers, sister, and I grew up, we scattered to the four winds. We did keep in touch via letters, phone calls, and occasional visits, but those slowed down as the years went by. I am blessed to have my son living with me and my daughter, son-in-law, and grandchildren just a 10–15-minute drive away.

It’s been so nice to feel good again and take that extended trip down memory lane. I look forward to feeling good again a little over a week after my September 17 infusion.

Another Treatment Day

I am having a hard day.

At 10:30 this morning in the treatment room hooked up to my pre-meds, I had a migraine aura, which is my signal to take my pain medication before the migraine headache starts. I asked a nurse if I could take my Tylenol with codeine pill, and she contacted the pharmacist, who said it was okay. (Just the hour before, I had been given the usual 625mg of regular Tylenol, which is part of the treatment regimen.) So, I did, and it prevented the severe pain that every migraine sufferer knows about.

With migraines, my eyes are quite sensitive, and it’s best to keep them closed, even if the headache does not manifest. So, I did for most of the remaining four hours. I’m glad that the hospital vinyl recliners are comfortable, especially with a warmed blanket and the chair’s heating and vibration functions.

My cancer friends—John and his wife Sharon from southeast Kansas, and Elaine, a local—were there, too, until about 11:30. It’s unclear when I will get to see them again because Elaine and John’s treatment regimens are about to change. Sharon did something exceptionally sweet. She brought roses to give to the nurses and gave me two lovely red roses and one white rose in a vase. These three people have been such a blessing.

My son picked me up when I got done at 2:30, and I felt worse as the day wore on. Still no headache, but a heavy, body wide discomfort and queasy stomach.

This is my first treatment day wearing my new fitness tracker. Called Visible, it is a wrist band and an app on my phone that tracks my heart rate. Visible is for people with chronic illness and persistent fatigue. Among other features, it tracks heart rate, dividing the numbers into three categories: rest, activity, and exertion. Based on a lengthy questionnaire about symptoms and an initial four-day tracking, it helps you pace yourself better based on heart rate variability and giving alerts when you are using more energy and should take some time to rest.  The whole idea of pacing is to help avoid the big crashes that can occur from pushing yourself too hard.

It's not just physical exertion that can add up, but emotional and mental exertion as well. Today I got a better idea of just how taxing cancer treatment is on the body. I’ve been in the exertion zone much of the day, even when I am lying down and relaxing! No wonder I spend the first week after treatment doing very little: my body needs lots of rest. I find the deep breathing exercises to be an excellent tool to help my body relax. There is much to learn, and I’m glad I have this additional tool to help me navigate cancer fatigue and fibromyalgia.

                                In time of trouble my consolation is this, that thy promise has given me life (Psalm 119:50).

Updates

 How is Benjamin doing?

His seizures have reduced somewhat as his old medication is being tapered off and his new medication is being gradually added in. He is sleepier than usual, but that will likely change.

How am I doing?

Unexpectedly and happily, I’ve had an increase of energy over the past couple days. This morning, though, I did too much and will be spending the afternoon in the recliner to rest up before going over to Dana and Shawn’s for supper and family time with Benjamin, Joelle, Josiah, Ava, Elijah, and Annabelle.

Next Thursday is my infusion day. Life is good.

Stress

Stress caught up with me today in the form of a migraine. Fortunately, pain medication wiped out the headache, but I’ve been light and sound sensitive today and have spent most of the day in bed. I’m still not using my eyes; instead, I’m typing “blind” and will correct errors before I post.

Summer heat in the triple digits here in northeastern Oklahoma has been stressful for everyone. About six pm I checked a weather app, which said the heat index is 111.  I am very grateful for central air conditioning.

Cancer treatment fatigue from my August 6^th infusion has been the usual. Wanting to get out of the house, I went to pick up a few groceries at Aldi yesterday morning, which did me in. You’d think I’d learn!

My son’s part-time janitorial job ended two weeks ago. (Goodwill, his erstwhile employer, ended its contract with the office building that Joseph and another employee cleaned.) Joseph did receive a retention bonus for working up through the last day, but still, all I can say at this point is “ouch.”

But the biggest stress is Benjamin’s current situation. Shawn brought him home yesterday from the children’s hospital in Oklahoma City, where they’ve been since August 7^th.

It will take weeks to gradually make the change off his current anti-seizure meds and onto the new one (planned out by the neurologist, of course). And then it will take time until the new med takes full effect, which we hope will be to eliminate or at least lessen the frequency of his seizures.

In the meantime, Dana and Shawn are taking extra measures to keep him safe from falls. One is having him wear a protective helmet. Another is using a strap around his waist that they can on hold on to when he is up and around. After a week in a hospital bed, he needs to be up and moving to build up his strength. The very hard part, of course, is maintaining constant supervision. Shawn is exhausted after a week in the hospital with Benjamin 24/7, and Dana is exhausted from the week at home with the other five children. It’s been a hard time for everyone.

On Monday, Benjamin will go back to school (Paths to Independence, a private school for children and young adults with autism). The director will assign an aide to always be with him, which is an awesome thing in my book.

Please pray for all of us. 

God's Blessings

From a July 19th sermon on Matthew 13:25-30, 36-43. I took a few notes so that I would not forget: God will remove the weeds at his coming. Trust God’s goodness even amid evil and suffering.

From a July 26^th sermon on Jeremiah 29: 1-7. I took a few notes so that I would not forget: Work for the benefit of the place you live even if you are exiled there.  Even though our congregation is closing soon, we still have things to do that God is calling us to do. Don’t put things off.  Do what’s within your reach.  God is with us through it all.  This reminded me to have hope and simply do the everyday things that I can do, what is within my reach.

And some quotations and notes from my daily Psalm reading in the New English Bible:

July 23                 I love the LORD, for he has heard me

                                                and listens to my prayer;

                                for he has given me a hearing

                                                whenever I have cried to him. (Psalm 116: 1-2)

July 29                 Grant this to me, thy servant: let me live

                                                and, living, keep thy word. (Psalm 119: 17)

                That is my prayer, oh Lord. Help me not be blinded by my limitations but see beyond them to You and Your Word. Use me to bless and encourage my children and grandchildren. Give me discernment and understanding to really hear and see their inner selves.

July 31                  In time of trouble my consolation is this,

                                                that thy promise has given me life. (Psalm 119: 50)

August 6             Thy word is a lamp to guide my feet

                                                and a light on my path (Psalm 119: 105)

 

I had my infusion yesterday and am experiencing the usual fatigue and brain fog. But my attitude has improved because of God’s encouragement over the past few weeks. That makes all the difference.

And a non-cancer prayer request: Benjamin, my 17-year-old grandson who has severe impairments from Down Syndrome and nonverbal autism, has had multiple seizures this week despite his anti-seizure medications. This morning, he fell face first in the kitchen, causing a deep cut just under his right eyebrow. The local ER consulted with his neurologist, who advised sending him to an Oklahoma City hospital (I don’t know the name) where there is a specialist for the types of seizures he has. Because no ambulances were available here, Shawn took him. Please pray for him and the whole family.

 

 

Stage IV

Day before yesterday, I was feeling sad, so I sat down at my computer to write about it. Writing is how I work through things, whether they be emotions or ideas. Right away, I started to cry. And as I wrote, I realized that I have not grieved the losses. Cancer has stolen so much, completely upending my life. Instead of grieving, I went straight to adjusting, adapting, and coping (with plenty of prayer thrown in the mix). Words and tears poured out that day, the type of heavy weeping you do when someone you love dies.

 Here are the hard parts:             Life goes on while mine stands still.

                                                                                                The treatments never end unless I do.

                                                                                                Fatigue drains physical ability and brain power.

                                                                                                Side effects knock out what I want to do.

Stark? Yes. True? Yes.

Some days my positive attitude goes down the drain.

Today I am finally crying. I’ve lost so much to cancer.

It’s another day alone in my home.

I was lucky enough to be able to put away the clean dishes from the dishwasher without getting dizzy.

It’s too hot to chance going outside.

What was it like to be able to work?

Or pick up my grandsons from school?

Or take a walk?

I miss my life.

I don’t remember the last time I cried.

Somehow, I put off grieving without realizing it.

I embraced acceptance right away, knowing Jesus would see me through.

And he has. And he is.

But still, this life is hard.

Bear witness to my tears.

After my first round of cancer, I had eight years cancer-free. I rarely even thought about the possibility of recurrence, which must have been a God-given grace. When the cancer reappeared in July 2024, it was considered curable. And it was, though about half of my energy disappeared with the cure.  I knew that there was a high risk of another recurrence, but I didn’t waste time worrying about it. What I did not expect was that it would return so soon, in less than a year. This time it was not curable but treatable, which makes a huge difference.

When cancer is considered curable, you count your treatments, aiming for the time you will be done. That helps a lot. Someday, you know, you will ring the bell. But with palliative care, which can be just as difficult as curative care, there is no timeline. There is the blessing of longer life but with restrictions that are usually referred to as side effects. Some people breeze through treatment, but not I. My side effects (mostly fatigue) rule my life. “Pushing through” makes me sicker instead of stronger. So, I pay attention to my body and rest a lot.

Being a productive person becomes a thing of the past. The fatigue goes far beyond anything that is cured by rest, though if I don’t rest, the fatigue gets worse. Much of the time the fatigue is not just limited to my body; my brain is tired, too. Sometimes I cannot focus to read at all. If I have enough energy to write, I do that. And then go rest again. This morning, I went on a short errand to a local downtown market, something I’ve wanted to do for a week. I was gone (driving time included) for less than thirty minutes and then spent much of the day in my recliner. I’ve done several five-minute tasks around the house and took a nap. But the tears are gone.

 

                                                               

False Alarm

 July 14

My July 10^th PET scan report said that two small spots lit up, their exact location unclear. Lower right lobe of lungs or top of liver. And now I wait until tomorrow’s oncology appointment to find out what that will mean for me.

I’m guessing lungs because of the coughing fits and beginning of breathlessness. But still the wait is hard.

Will Dr. Moussa order an additional scan? The radiologist report recommended either a watch and wait until my next PET scan or a CT or MRI with contrast. Will my treatment schedule change? Will my treatment itself change? Is this the beginning of harder times?

I’ve been wondering what’s up since my infusion three weeks ago. The usual one-week fatigue turned into three weeks, with July 3 and 4 being the worst days. I am hoping this will not be my new normal.

July 17

Turns out there was no need to panic because no solid mass was found. I will have a PET scan follow up and, in the meantime, continue my course of treatment.

As far as the coughing fits (my lungs sounded normal), Nurse Ashley suggested cutting back on the Mucinex I take daily. It had not occurred to me that it contributes to my postnasal drip. I cut back, and that has made a big difference already.

The unanswered question is why my fatigue lasted so much longer than usual. I will carefully monitor the fatigue from yesterday’s infusion and report back to Dr. Moussa at my next appointment on August 5.

Yesterday afternoon I had several hours of feeling super lousy. But today has been the usual fatigue. This morning, I did a few too many things (started a load of laundry and took trash out) that didn’t help. It’s been a quiet afternoon in my recliner.

This morning’s Psalm reading, chapter 111, brought encouragement. Verse 1a, “With all my heart will I praise the Lord,” reminded me to praise God especially when I don’t feel so great. And verse 4b followed up with this beautiful truth: “the Lord is gracious and compassionate.” He is.