Notes

November 15

Earlier this week, I gave up on trying to use the pain medicine the doctor ordered. I couldn’t stand the zombie feeling it gave me during the day, and at night it kept me awake. So, I made my request and disposed of the pricey Vicodin at the pharmacy when I picked up the inexpensive Tylenol #3.

That change did not yield the title of game changer, but it was a step in the right direction. My body’s response to chemo seems to be an ever-changing landscape. New things keep popping up, most recently an intense sensitivity to odors and sounds, even to the music I love so much. At times, I need silence. My brain overreacts to stimuli.  But this morning, I was able to listen to music, for which I am grateful.

Sometimes the fatigue forces a full stop. But it’s my brain I miss the most. I know I am not thinking clearly.

November 16

I woke up feeling almost normal and decided to write. However, forgetting that the “almost normal” feeling likely had a time limit, I wasted some time online. Unfortunately, that hour used up the sense of well-being and bit of brain power I started out with. Back to the recliner to rest.

November 17

The good news from a few days ago is that I’m getting an extra week between treatments due to Thanksgiving week, making my next treatment in the first week of December. That automatically gives me another extra week before my last treatment, which will now be the week after Christmas.

One evening recently, as I lay in bed listening to music, I was swept up in the glory and beauty of God’s love. Such moments are pure gifts from the Father’s heart.

Saturday

 And here it begins again: wobbly knees and shaky hands (likely peripheral neuropathy) and muscle and joint pain. But this time I am prepared. As pain twinges started up yesterday, joining the sheer exhaustion from chemo, I started on regular Tylenol. With the gradual arrival of muscle complaints in my back, I’ve graduated to Vicodin. Unfortunately, it makes me spacey and sleepy, but I find that far preferable to pain. Clearly, I’m not going anywhere for a few days.

But I do have choices: recliner, bed, office chair at computer; music, social media, and games on my Kindle. Reading books depends upon the level of concentration I can achieve. Oh, yes, and phone calls. I’m catching on to the fact that phone conversations are good pick me ups.

The thing about cancer or any chronic illness is that it can isolate you rather quickly. I like being alone but, you know, there is a limit.

And here, at this moment, my brain has hit its limit on concentrating enough to blog, so I stop for now . . .

Now evening, and I’m still spacey, but not quite so bad since I cut my pain med dose in half at supper. That plus about an hour with the heating pad seems to have worked nicely.

Reading today was confined to social media and news. Hopefully tomorrow, I’ll get back to a chapter a day of N.T. Wright’s study, The Heart of Romans. Even without chemo brain, it would be a bit above my head, but at least I can follow the broad scope of his commentary on Romans 8. It’s inspiring and good.

I start and end my days with music. The two albums I listen to the most, both by Christian musician Fernando Ortega, are Give Me Jesus and The Shadow of Your Wings. They are peaceful and inspiring. They help me remember whose I am and keep me grounded. God is good all the time, and all the time God is good.

My Good Week

 This past week was a welcome reprieve. I felt good enough to drive and leave the house on my own. True, for most things, one hour and just one errand used up my energy, but it is quite amazing how refreshing everyday things can be:

• v  several shopping trips to Walmart and Aldi.
• v  picking up prescriptions from CVS.
• v  browsing at Goodwill.
• v  enjoying a delicious lunch at Jude’s just because.
• v  picking up four more caps in different colors from Hopestone.
• v  working at my Good Shepherd office for an hour one day.
• v  going to church Sunday, for the first time since October 13!

Best of all, I did two 4+ hour visits with my grandchildren (and their parents, of course). The kids were fascinated by my lack of hair, especially Ava (6) and Elijah (almost 3). Those two wanted to touch and rub my head a lot, which was fine with me. Ava was the one who asked if I would please take off my cap. Josiah inspected my head as well. Benjamin did not recognize me at first. Joelle, being a more grown-up 11 ½ year old, was not as focused on my bald head.

You might wonder why I did not do anything with friends . . . because I didn’t feel like I could plan ahead.

To be perfectly honest, there were also some struggles. My hands and forearms itched intensely several times a day and during the night. The only thing that helped was ice packs. Yesterday, the itching stopped thanks to the steroids I take the day before chemo.

Also yesterday, while Joelle and I were playing charades, I decided to act out being a cheerleader, which I was in eighth grade. I stood up to do the Saugatuck High School song and cheer, which I have remembered all these years. Except I didn’t even quite remember the first move, and the rest was simply gone. And, in the evening when I was doing my stretches, which I had finally memorized a couple weeks ago, I couldn’t remember the whole sequence and had to look at the printout to do them.

All in all, though, it was a great week. Today I do chemo treatment #2 and will take it really easy at least for the next week (and remember to take my pain meds when I need them). Just think: two down, two to go.

A Precious Blessing

 Last Saturday evening, I saw an offer to help on my Facebook page. It occurred to me that instead of simply responding with a “thank you,” I could do what is harder for me and make a request. All week I had been thinking of how soothing watermelon is for a sore mouth and sensitive stomach. So, I asked, and the happy result was a Sunday delivery to my front porch. In a bag decorated with a bow were two items: a container of watermelon chunks and a tea towel.

The drop-off was accomplished by the ring of my doorbell. I hurried to the door in time to see Cindy and her husband in their truck ready to pull out. She blew me a kiss as her husband smiled. I sensed God’s blessing on them as they shared in this moment of ministry.

In the house, I put the watermelon in the refrigerator and unfolded the tea towel imprinted with a verse from a favorite hymn:

When peace, like a river,

attendeth my way,

When sorrows

like sea billows roll;

Whatever my lot,

Thou hast taught me to say,

It is well, it is well

with my soul.

 I read the verse and remembered that Horatio Spafford had penned these words during a time of profound grief. I thought about times in my life when God has given me inexplicable peace amid great sorrow.

And a little later, I savored every soothing bite of watermelon.

Cycles

 Just over a week ago, I was in the grip of intense pain. I finally called the triage nurse, who kindly reminded me to drink more fluids and take my pain medicine. I’m still asking myself how I could have completely forgotten about taking pain medicine when I was in such excruciating pain.

So, I followed her orders and found blessed relief from the pain if I took Tylenol #3 around the clock, which left me in a codeine haze. I dozed and slept, dozed and slept for the next few days, waking just enough to keep drinking water and protein drinks, and eating small meals.

I am grateful to have eased out of that cycle and hope to never repeat it.

Yesterday, I finished another cycle: completing the second of two physical therapy appointments that covered best practices to avoid lymphedema. I’m doing the daily stretches to help my lymphatic system keep up its good work. I know to do a daily visual check of my arms and hands to see if there are any changes, and I’ve learned how to measure my arms each month to keep track of any swelling that may occur.

And today, October 30, my hair started falling out as I shampooed it. Though I’ve been expecting to lose my hair any time now, the handful in the shower drain still shook me up. Within the hour, I went to Great Clips to have my head shaved. It was the first time I’ve driven in over a week. As I backed out of the driveway, I started to sing, and God buoyed me up with joy as I thanked him for feeling well enough to drive, joked with him, and praised him. “Give Me Jesus” is one of my favorite songs. Each short stanza ends with these words: “You can have all this world but give me Jesus.” I sang, “You can have all my hair but give me Jesus,” and laughed out loud.

Who would think of joy and laughter about getting my head shaved? That was God’s gift of joy in the moment. I got to share that joy when my friend Veloy called, and in interacting with the Great Clips staff. That’s the neat thing about God’s joy: uncontainable, it bubbles up and spills out to others.

Back at home, after a delicious lunch supplied by Hopestone Cancer Center, I’m ready for a nap and looking forward to grocery shopping later, covering my freshly shaved head with my pretty purple cap (also supplied by Hopestone).

 

 

 

 

Brutal

 Cytoxan and Taxotere are doing a number on me. Brutal beyond anything I ever imagined. My back feels knotted up in cramps with occasional knife stabs of pure pain. I hobble around with unsteady knees and achy hips. There is no comfortable position, even in my memory foam bed and recliner. The back of my neck is stretched. My shoulders hurt. All is pain.

Last night was endless. Sleep for an hour, wake up in terrible pain, ease out of bed to use the bathroom, lie down again to cramping and knife stabs, somehow sleep another hour.

The cramping and pain attacks started Saturday, were in full force yesterday and overnight, and continue this morning. It is 6 am and here I sit at my computer, which is another pain perspective. Headache, with occasional icepick stabs, my spine wearies from sitting up.

Yes, it is bad. My arms are dead weights, my legs are kind of floppy. And the pain does not stop.

Earlier, I put myself in the surround sound of my headphones listening to Give Me Jesus, a Fernando Ortega album. His soothing voice helps as does the praise, though I don’t know that I can praise when I’m in such pain.

When I attempted breakfast at four am, my cinnamon keto bagel was not so good as usual. I ate it for the high fiber content. Coffee was blah. I may need to give it up. I need to eat vegetables, but they sound too harsh and gross. Heartburn pressure resides in the center of my chest. My knuckles hurt as I type.

Yesterday I gave up on the range of motion exercises, though I did my stretches to prevent lymphedema.

Later I will call a triage nurse for suggestions. Heat? Ice? Distraction, if possible?

Just to let you know . . . usually, side effects get worse with each treatment. Please pray for me.

PS. Now it is close to 10 am and I’m trying to understand what has happened. After writing at 6 am, I retreated to my chair, slept for a while, and then got up to go rest some more in bed, eventually waking up around 9 am. Here’s what I don’t understand: during my sleep it was like a switch was turned off. I’m left feeling beat up, achy, and sore, but the pain attacks seem to be turned off for now. I hope this continues!

Balance

 Yesterday, I went to see my grandchildren. I didn’t realize how exhausted I was until I got there (a mere ten-minute drive). The normal course of action is for me to talk with my daughter a bit and then go back to the girls’ room to play pretend. I was too tired to do that yesterday, and poor little six-year-old Ava just didn’t understand. She began to cry. Dana explained that sometimes Grandma would not be able to play, and I offered to read Ava a book of her choice. That helped. But near the end of my hour plus visit, Ava had an idea. Could I be a mountain for her to drive a toy car on? “Why, yes!” I said. So, for a few more minutes I sat there comfortably on the couch while Ava drove her car up my arm to the top of my head, and Joelle quickly created a small house out of magnet shapes there. It was sweet. My granddaughters’ imaginations always amaze me.

I keep assuming that my reactions to chemo will be the same as eight years ago even though the drugs are not. This first go-round has been filled with surprises. I felt pretty good, though tired, on chemo day (Wednesday) and Thursday. Yesterday I became exhausted, and today the exhaustion increased with the addition of bone, muscle, and joint pain. I pretty much slept until noon and lounged around for the rest of the day. By early in the evening, I felt like I could get some needed supplies at the store if my son took me, so off we went. Now back at home, I have a headache and will probably go to bed soon.

You see, I expected to start feeling better by the weekend, and that did not happen. I don’t know what to expect. And that brings me to my point. As with the recovery from my mastectomy, each day brings the unexpected. I may feel better or worse than I thought I would. And things are always changing. Many of those changes are happy mini surprises, such as being able to extend my arm further or not needing some tiny habit I developed to compensate for discomfort.

My takeaways from yesterday and today are to be very intentional about my protein intake and keep up with drinking lots of water. The short trip to the store reminded me that walking around a little more than I think I can is also good. Balance is the key, and isn’t that true of most of life?