Thanksgiving Week

 This morning, Wednesday, I treated myself to driving across town to pick up a prescription. I know it doesn’t seem like anything worthy of being called a treat, but it was. I usually don’t drive anymore because it uses up so much energy. But it was a crisp, sunny fall day just perfect for a little drive, and I felt well enough to do it. On the way, I even stopped at the library to pick up a book on hold (Louise Penny’s latest novel, The Black Wolf). At Walgreen’s I looked around for a bit before picking up nystatin mouth rinse. From there, thoroughly worn out, I drove home.

Yesterday afternoon I took a walk . . . across the street to visit my neighbor. And that was after the morning ride to Aldi with my son to pick up a few groceries. He drives, I go in the store with him to make selections, and when we are done, I leave him at the line to the cashier while I go out to sit in the car.

Monday, my daughter picked me up to come over for supper and time with the grandkids. As always, that was fun!

And on Sunday, my son drove me to church. I stayed seated for the entire service, but I was quite happy to be able to sing a verse or more of each of the four hymns, something I have been unable to do since September when I thought I had bronchitis, but it turned out to be a pleural effusion. Singing takes energy, too.

So now you have the rundown of a week in which I feel a little stronger than usual because of the treatment cycle which, after two weeks in a row of my Thursday infusions, gives me the third Thursday off. I also get this week off due to Thanksgiving, so who knows what I’ll be up to next week!

People talk about quality of life when you are receiving palliative care. The infusions keep the cancer somewhat controlled to give me some quantity of life. They also drain me. However, I still find quality in each day. That quality is in being able to spend time with family. It is in being able to write and concentrate enough to read. It is in listening to music and praying. It is in being able to worship with my church family. And next week I get to preach.

Not every cancer patient experiences the level of weakness and fatigue that I do. But you must remember that when I started treatment this time, it was only nine months after finishing treatment for the first recurrence, and my energy had not returned to what used to be normal for me.

So, no, I won’t be traveling or going to special events or completing a bucket list (which, by the way, I don’t have). I’ll be here at home with my son Joseph or over at Dana and Shawn’s with them and their delightful brood of six. I’ll do the bits I can, rest as much as needed, and appreciate every little detail of my beautiful life.

It’s been a hard year, yes, but it has also been a year full of God’s blessings and His provision. Tomorrow is Thanksgiving, and there is much for which to be thankful.

Praise the Lord, my soul; all my inmost being, praise his holy name.

Praise the Lord, my soul, and forget not all his benefits (Psalm 103:1-2)

an experience from October

 I’ve never been able to imagine heaven. But God gave me a glimpse.

We are told that there will be no more sorrow or pain, no more sin or strain, no more disability or weakness in heaven. However, I think of my friend Cathy joyously spinning along in her electric wheelchair instead of walking, dancing, leaping for joy. And I don’t even know how to start imagining myself without the last thirty years of fibromyalgia.

I was sitting at my computer, saving photos from my family’s October 4 photo shoot when it happened.

At once, I felt as if an invisible hand lifted me up a few inches from my office chair. I looked to the left and saw my profile (but not one of the pictures) infused with joyous energy. The energy surge left its mark for hours. Was this some strange side effect of chemo drugs and the anti-nausea medicine (an anti-anxiety med)?  I thought that for a time. But later as I pondered this unusual experience, I saw that it was a gift. A preview of myself in paradise.  There my body will no longer weigh me down. The Holy Spirit will be my source of joy and life, a vibrant energy unsustainable here on earth bound to my mortal body, but endless in the presence of God.

Yesterday and Today: Part One

I come home from today’s chemotherapy in Bartlesville sleepy from the IV Benadryl and hyped up from the IV steroids, not a good combination! Yes, my labs from yesterday’s Tulsa labs and appointment with Dr. Moussa’s nurse were good enough to proceed; in fact, my liver enzymes were normal! Ashley did note that my lungs made the rubbing sound that accompanies pleural effusion, so she ordered an X-ray, which showed a small accumulation, this time on both the right and left lungs. There is not enough to warrant getting the fluid drained yet.

It is a relief to have the port for blood draws and IVs rather than using my left wrist or hand. Evidently, the veins farther up my arm are crooked and roll rather easily. As long as the word “crooked” only applies to my veins and not my character, I can handle that label!

The port itself is on my chest straight across from my right shoulder. Unlike the port I had almost ten years ago, this one really sticks out. I’m having a hard time getting used to it, but fortunately it is not as tender as it was last week.

 

In case you don’t know, I am a people watcher. Yesterday, as I waited my turn in the lab waiting area, two people caught my eye. The first was a young woman with a crew haircut by whom I sat, lucky to find a chair. (A crew haircut is a good preparation for losing your hair.) Joni started up a conversation with me, and we shared cancer stories. I’m guessing she is in her twenties. She was treated for non-Hodgkin’s lymphoma in 2023, and it has come back. She is nervous about traveling to Oklahoma City soon to have her stem cells harvested and to have aggressive chemotherapy in the hospital. (I don’t remember which comes first.) She was stoic about the significant chance for another recurrence as well as a high probability for breast cancer later. Our time to talk was short, and I regret not bringing up Jesus. My heart breaks for her, and I’ll be praying for her.

Soon after she left, I noticed an older husband and wife. A lab technician came out to personally escort her into the lab, taking her hand. I recognized the pleasant blank look on the wife’s face as dementia and prayed silently for her and for her husband as her caregiver.

Today, in the Bartlesville treatment room, I noted the elderly gentleman whom I’ve seen before. Today, I realized he is likely a nursing home resident. Eddie must be over six feet tall and skinny as a rail. He is endlessly polite and a favorite of the nurses, who joke around with him. He finished before I did, and a driver from Elder Care came to help him into a hospital wheelchair. I wondered about all Eddie must have experienced in his life as a black man.

Another person I recognized was a black man in the twenty to forty age range and. His hair is long enough to put into two tiny braids back behind his ears. (I hate feeling the need to mention skin color, but I feel I must in order to give you a clear picture.) Last week he accompanied an older white man, and this week he accompanied a middle-aged white man whom I supposed to be poor and homeless, based on his appearance. Why am I telling you this? Because the man with braids clearly has a servant’s heart. He not only assisted the person he accompanied but also helped other patients, even me, last time. When I requested a warm blanket from a nurse, and she couldn’t get it right away—and I had no problem waiting—he brought me one and carefully arranged it over my lap. Whether he is accompanying friends or is a hired caregiver, I saw his gentle, respectful approach to people and the camaraderie he has with the nursing staff.

And one more in the treatment room today, a very old white man who looked pale and feeble. He received bad news that because his creatine levels had increased, he could not have his treatment today. The nurse was so kind and patient explaining this as well as that his doctor wanted him to be admitted to St. John Medical Center in Tulsa today. Though he was surprised and flustered by this news and did not understand it, he had the presence of mind to make a bunch of phone calls to people he knew to get a ride and arrange for various other needs while he would be in hospital.

Do I sound like an eavesdropper? Let me explain that the Bartlesville treatment room is an open rectangular room with hospital recliners and IV stands placed all around the perimeter. Thus, everyone can hear part or most of everything that is said.

These observations reminded me again of how so many people are dealing with so many difficult health issues. Seeing them reminded me of the need to be gracious and respectful to every single person we meet. That is the call of Christ, to love God with all our heart and mind and strength, and to love our neighbor as ourselves.

 

Part Two

I feel compelled to share a dark, chaotic dream I had in the middle of last night. I do not remember exactly what was happening, just that there was no way to escape the evil all around. Surprisingly enough, the dream was not frightening. I woke up with the shadowy images in my mind and spent a long time pondering what I could only partly remember. After much thought, I came up with this: Jesus the Christ is the light in the darkness and the light that exposes the darkness: he exposes evil for the twisted thing it is. Sometimes we cannot perceive that light at all. Sometimes we may see a pinprick. Sometimes he surprises us with the light’s glory. That glory is reality, and that glory is eternal life. I am safe in that light whether I live or die (and, of course, we all die eventually!). Aligning our lives with the light of truth is (and should be) the walk of Christ followers. Living into that light brings unspeakable joy and peace.

Yesterday and today as I observed fellow cancer patients, I got to see pinpricks of light in the midst of suffering. Glory be to God!

Update

 By last Thursday my liver enzymes had gone down, so I had the scheduled infusion, the dose reduced by 25% and delivered via the port that was put in the Monday before. Everything went well.

I’ve been shaky, a little off balance, and fatigued since the weekend, but that is nothing new. Let’s just say I’m living a leisurely life!

Oh, and one more thing: the blood test for my tumor marker also decreased. I’d say that is good news all around.

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!