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.