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.

 

 

This Week

This week I’ve unexpectedly developed the dreaded moon face. In other words, the steroid given in every infusion has caught up with me. My face has become quite round. Why this has happened now (two weeks out from my last infusion) and in just a couple days is a mystery to me.

I had hoped that with the infusions reduced to once every three weeks since March, I could avoid moon face. Alas, not so.

Doing a little Internet research, I discovered that steroids also can redistribute fat to the belly. That solves the mystery of why my belly keeps looking bigger even though I have not gained weight. (I suppose that one perk of having cancer is that my oncologist and primary care doctor don’t want me to lose weight.)

Sometimes I wish I could go incognito with my cancer, but now I see it would take more work and discomfort than I am willing to endure. Wigs are uncomfortably hot. Plus, since my eyebrows and eyelashes are virtually nonexistent, I would need to draw on eyebrows and see if fake eyelashes would fasten to my eyelids. That would mean wearing makeup to avoid looking totally ridiculous. Too much hassle.

Since it is obvious with my hats that I am bald, I may yet get brave enough to be bald in public.

Several weeks ago, my four-year-old grandson said with the certainty that only young children possess, that I was not a girl. I assume he came to that conclusion because I am bald. On the other hand, he regularly tells me that I am beautiful. And I found out last week that he thinks I am five years old! Of course, there was the time that he patted my tummy and said “Baby?”

No, baby, but I’m holding on to the idea that bald is beautiful!

Complaints and Prayer

 Recently, I realized that I have been receiving chemo/immunotherapy for eight months. That is twice as long as the chemotherapy I had with either of the two previous triple-negative breast cancers.

Truth be told, I am tired of having cancer—though I hasten to say I am very thankful that the treatments are working so well. Here’s what I’ve noticed so far.

I need a full week after my treatment devoted to rest. I’ve learned that the best way to handle those days is to stay home and, as I can, do a few little 5-10 minute tasks each day, things like putting dishes away or starting a load of laundry. That at least gets me moving more and makes me feel like I’m accomplishing something. You might think that I would be reading books, but my concentration level usually is not up to that.

Then, during the two weeks before my next treatment when I’m feeling better, I try to get out of the house every day, which usually means short errands. And I love being able to drive myself over to see the grandkids. (Dana and Shawn are good about picking me up otherwise.)

In addition to getting fatigued easily, I sometimes need sensory time-outs resting in my quiet, dark bedroom.

Now, those are the general guidelines. Sometimes a surprise pops up, like not feeling good on a day I am “supposed” to feel good. Or unexpectedly and suddenly completely running out of energy.

Though eight months is a long time, I hope for a much longer time to live with cancer. Yet, the limitations do bother me at times.

One morning last week, I was reading Psalm 80 and really liked the line, “O God of Hosts, restore us.” So, I made a little change and wrote a prayer, which I am revising and editing as I copy it here:

O God of Hosts, restore me. I am tired of cancer. I am tired of my limitations and same old routines every day.

O God of Hosts, restore me. I miss clarity of mind. I miss being able to focus as well as I used to. I also miss being able to move freely, such as taking a walk longer than a block to enjoy the outdoors.

O God of Hosts, restore me. Help me discover new patterns of living within my limitations that are life-giving.

O God of Hosts, restore me. Help me live into Your presence and purpose throughout each day and appreciate anew the gifts of the present.

O God of Hosts, thank You for life itself!