Pneumonitis and the Prednisone Taper
Today was the pneumonitis checkin with Dr. Oncology. Left to my own early morning devices, including my assessment of breathing, coughing, etc., I reduced my prednisone consumption by 20 mg. and was complimented on that decision in the exam room. Tapering will continue to be the plan. Typically a tapering dose is lowered by 10 mg. a week, but she said we would start with a 20 mg. reduction and see how I respond. We can always up it by 10 mg.
So, my oxygen level is good– 96%. My lungs are clear. I’ve made a strong response to the steroids and she is encouraged by that. Yeah– me too. When I’m down to 10 mg., we can start the durvalumab again. She doesn’t think the pause is such a big deal, as the big treatment– chemorad– has already happened, and the immunology is meant to consolidate that treatment.
The impact of steroids on the body is intense, and the body doesn’t always bounce back with alacrity. The prednisone effectively shuts down the adrenal gland production of the hormone cortisol. I love this description of how prednisone works in this blog:
Inflammation is the major stressor of pneumonitis– the cells are injured from the radiation, and maybe also impacted by the durvalumab. There really isn’t a way to know. But the typically low levels of cortisol that exist in the body aren’t capable of mounting the attack a pneumonitis-afflicted lung needs to heal.
“So we’re basically taking what our body naturally does to recover from an incredibly stressful situation and we’re hijacking it. We are raising the dose as high as we can because normally we only have two and a half to five milligrams of the equivalent of prednisone in our body.”
And the adrenal gland just stops producing cortisone, because why bother doing the work when it’s not necessary? But if you just stop the prednisone, your body is caught napping. Without any cortisol, there’s a huge crash. Nasty nasty stuff happens, which I am not interested in even hearing about. Thus, we taper. And not a moment too soon, because this prednisone is chewing my stomach to bits.
About This Thing Called “Rest”: The Parasympathetic System and Healing
I do not understand the physiology of rest. It is not in my nature. And it doesn’t work to say, “Rest.” “Do Less.” That makes no sense to me– my mind demands Action. But give that mind something to chew on and it’ll settle in the corner and work it like a bone. I got that today. Dr. Oncology talked about healing as involving the sympathetic and parasympathetic systems of the body. The brain– sympathetic– drives us when it’s necessary, easily overpowering the parasympathetic systems. “But why now?” she asked. “I think you need to reflect on that. Your body has been through so much– it needs to heal. It’s not time to flog it to work harder.”
She looked me in the eye and said, “Now is the time to find the new normal. Just for right now, not forever. Because if you keep expecting your body to do what it did Before Cancer, you will make yourself insane.”
I do think it is difficult for people who have not lived with active physical lifestyles to understand the meditative joy that comes from a long, long bicycle ride or challenging hike (Dog Mountain!). I focus on activity and working out now because I am eager to reclaim that part of my life, and this is valid, whether she understands or agrees. But I am also willing to do a little learning. While I couldn’t find anything reasonable to read about the physiology of rest, I think I will make headway learning about the parasympathetic system and its effect on healing.
But, also in my defense, I have spent time the past several days musing about joy. If there is joy in the garden, in baking, in sitting in a chair by an open window and watching the hummingbird at the feeder, that is valuable. Moments like these make for a life well-lived. So I have been thinking that now is the time where these moments take precedence. And I have been putting that into action. Yesterday, for example, I was active until mid-afternoon, and then spent time in a chair by the open window, reading and dozing.
I told Dr. Oncology I would never be someone who says, ‘I am so grateful for the cancer.’ She allowed as how that was a little too PollyAnna for her taste, as well. But, I told her, I do see the opportunities. And so here they are, a few each day.
Then she repeated a sweet little mantra that I will ponder: Rest. Digest. Heal.
Thanks for reading.
Pharmacy image by analogicus from Pixabay
Sending you so much love.
Back atcha.
This is SUCH good progress — both physically and mentally. It's so darn hard to find that balance — especially when you are a super active person. So … congratulations on this step and also in listening to your inner physician about the prednisone!
Thanks, Maurine.
Love the graphic–you have an ability to find photos and graphics that really work! Cool.
I get it–when I was younger (as in, in my 30's and 40's) I was a distance runner. The way I worked out any problem was to put on running clothes and run a couple of miles.
As I aged it became more of a "go to the gym" event, life some weights, work out the problem.
When I got cancer, it was like, "who the hell hit me over the head and took away my coping mechanism?" "Who is this person who takes three hour naps?"
I decided that God has a sense of humor and she wanted me to see how *other* people approached life. You know, when there's a problem, take a nap.
I found it humbling. And I also discovered why some friends took to saying "I survived a weekend with Connie and Anne" when they visited us for a weekend in the late 90's when we were renting a place in the Catskills. Our normal level of activity was overwhelming for some people.
So there's that. Hang in there. Sending a HUGE hug.
Thank you, dear Connie. Adjusting to such a huge change is…huge, eh? I guess why there's the old adage, growing old(er) gracefully? I anticipate a lot of kicking and screaming here. The good news is that when Covid abates and your & A are ready to travel, you'll be able to visit some active kindred spirits here.