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.

 

 

 

Fifty Years Ago

Fifty years ago today, during some extremely hot weather in Freiburg, Germany, a friend and I hiked up a small mountain (or was it a big hill?) and had a picnic in a cow pasture. At age 20, I could not even imagine being 70 or what I might be doing on the 250th anniversary of our nation’s founding.

I surely would not have imagined what yesterday and today have been like for me.

My most recent infusion was on June 25^th. Normally, once a week has passed, I’m ready to reenter the world, meaning driving my car and getting out of the house for a while. I’ve come to depend on that. One week of staying home and resting gets balanced out with the two weeks of feeling better until my next infusion.

Assumptions are dangerous when you have cancer. They make reality harder to bear.

Today, like yesterday, I’ve been the type of tired that is not relieved by rest but nonetheless demands it. I get fatigued by relaxing in the recliner, so then I go lie down in bed for an hour or more. Sitting up to write at my computer means I’ll be back in bed again or at the least reclined in my recliner pretty soon here.

But I need to write right now to deal with this unexpected severe fatigue. Is this a fluke? I’ve not been outside and keep my house at 73 degrees. (The air conditioning bill is going to be painful, but feeling warm at all brings on nausea, so keeping cool is worth it. Especially since weeks two and three are marked by nausea anyway. Fortunately, I have two prescriptions that I can choose from, and do, at the first sign of queasiness.)

Could this be my fibromyalgia acting up? It’s hard to sort out what is fibromyalgia and what are side effects from cancer treatment.

And the big, scary question: is this how week two after treatment is going to be from now on?  Or are my white blood cell counts low? (something that has not been a problem this third time with cancer) If it is merely low counts, that can be solved with a shot the day after treatment. If this severe fatigue is a heightened side effect . . . well, I do not know.

So far, I’ve been fortunate that my side effects have been minimal in the larger scheme of things. Yes, I’m borrowing trouble by wondering if that is going to change. I’m feeling afraid, something I claimed in an earlier post that I rarely have experienced in this whole cancer saga.

The problem with severe fatigue is that it is isolating and boring. After a week of staying home, I am tired of staying home with no energy to do anything.

Okay, I’m done complaining for now. I’m going to remind myself that no matter how I feel, God is still present. And I’m going to post this now, then eat something and go rest again.

Thanks for listening.