Interventions

It’s been three weeks, and here we are at another infusion day.

Two weeks ago, I noticed that my port had migrated about an inch down from its original location to a somewhat more uncomfortable spot. That migration might have been caused by the severe coughing attacks I’ve had from whatever allergen is in the Oklahoma air right now. Port migration is unusual but not unheard of. The port study I had recommended a new port be installed because my current port tends to fail at blood draws.

Earlier this week, I saw a lymphedema specialist. She recommended medical equipment for me: daily wear compression sleeves and a mechanical compression sleeve with a vest, which I will be using an hour a day. Besides confirming the lymphedema in my arm, she noticed that I very likely have ascites (extra fluid) in my belly. The compression vest will help move that out. When she mentioned it looked like about twenty pounds of fluid, my inner reaction was “Hallelujah! I’m not as fat as I thought!”

Day before yesterday, I finally got around to getting a flu shot, extra strength for seniors. Surprisingly, my arm did not hurt after the injection, but within an hour or so I had a headache and muscle aches that were just as bad as my usual reaction to my cancer treatment. This was the first time I have ever had any reaction to a flu shot. I imagine my body is pretty stressed all the time from my cancer regimen, and the vaccine was one invasion too many.

Now I am waiting on a call from the medical supplier to come out and do my measurements for the compression stuff, and for a call from Tulsa St. John to schedule my port replacement.

In the meantime, my current port was cooperative yesterday for the blood draws, and my appointment with one of Dr. Moussa’s nurses (filling in for another nurse) was helpful. She was concerned about my coughing because one of the potential side effects from Trodelvy is lung inflammation. So, I had a last-minute CT scan. No signs of lung inflammation, so it’s infusion day as usual today. However, the scan noted a small nodule on my thyroid—she assured me that nodules are usually benign—so an order will be put in for an ultrasound of my thyroid to investigate it more closely.

I never imagined I would look forward to compression for my arm, but I am. My poor right arm with all its compromised functionality from injuries many years ago (ulnar nerve displacement and a shoulder dislocation) is complaining from the fluid buildup as well. And all the while I am so very grateful for Medicare, which makes all these medical interventions possible.

 Later in the day: treatment room was quiet with only a few patients. Accessing my port was a bit challenging because it has shifted some more, with its side on the top and the top facing down.

I received two calls from Ascension St. John to set up appointments next week. On November 5, I will have an ultrasound of my thyroid. The next day, I will have my old port removed and a new port placed. I always appreciate how quickly OCSRI acts to make referrals, and, in this case, Ascension St. John has responded.

 

Mixed Report

Dr. Moussa said it several times with emphasis: “You are doing a good job.”

I told him I was glad to still be alive, a whole year later.

He was very happy with my PET scan results. Me, too.

Out of yesterday’s appointment with my oncologist came plenty of affirmation.

And my observations brought solemn agreement and promise of follow-ups.

Because my port has become blocked four times in the past year with fibrin sheaths that my body seems to produce in abundance—and unblocked by injections in it with what I call the “clot buster”—Dr. Moussa ordered a port study. It is a brief imaging study that will be done here at the local hospital by a radiologist to determine if I need a new port. It’s set for October 19.

The more concerning thing is that I’ve developed lymphedema in my right arm and cording under my armpit. Both are quite uncomfortable. I’ve noticed mild swelling in my arm but have not been sure about it. The cording I discovered this week. I went sleeveless and prosthetic-less to my appointment I could easily show him. He recognized the lymphedema and cording right away. (I’m too brain foggy to explain, so you’ll have to look it up. It involves damage to the lymph system.) Dr. Moussa will refer me to a lymphedema specialist. Treatment includes wearing a compression sleeve. I’m hoping to receive the referral call tomorrow.

The other thing I showed him is a several-inch strange trail of small dark spots going down over my left shoulder. He said we would keep an eye on it. (It might be a Trodelvy side effect.)

I’m rather down about the lymphedema and cording. They are two side effects of having breast surgery and removal of lymph nodes that I really hoped to avoid. I’ve noticed recently that my right arm gets fatigued and hurts more quickly with any kind of use. (I’ve had problems with that arm ever since an ulnar nerve injury back in the early 1990s and a shoulder dislocation in 2004.)

Today was treatment day, and the pain and fatigue have begun.

But here is what I choose to remember: God is present. I can call on Him no matter how lousy I feel. I am weak, but he is strong. He’ll get me through this.

 

Best News

Yesterday, I received my September 30^th PET scan results: “No evidence of metabolically active malignancy.” That’s the best news anyone with stage IV cancer can receive. Obviously, the treatments are working fabulously. However, an “all clear” does not mean you are done with treatments because they are what continue to keep that nasty cancer away.

Today, October 2^nd, marks a full year since I started palliative care. This is a happy milestone, too. A year ago, I thought I might not even live for another twelve months. And here I am, perhaps a little worse for wear, but happily alive.

A week ago, my 18-month-old granddaughter, Annabelle, gave us all a laugh. Normally, she is super happy to see me. But when Dana carried her in from the car, Annabelle just looked at me, no reaction. Dana said, “I think it’s the hat.” I whipped my chemo cap off, and immediately Annabelle was all smiles. My bald head is normal to her!

And I must say it’s getting kind of normal to me, too.

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.