Recovery and Remission, “One Day at a Time”

I have been musing on the relationship between recovery from substance abuse and remission from cancer. It feels significant that one group walks alongside their addiction, one day at a time, toward sobriety –much like the cancer “survivors” walk alongside their illness—and fear of relapse– toward remission. Call me a survivor if you like. I won’t argue because it is true of all of us on the planet. But those of us who have “survived” a cancer occurrence can feel its steely presence just out of reach of ordinary conversation. The saying and practices of those who walk alongside addiction are powerful truths that don’t shrink from acknowledging the possibility of recurrence while bolstering a person’s grit and courage to face it down everyday.

Recovery themes that I am really appreciating:

One Day at a Time Means Focusing on What You Can Control

One Day at a Time Means Counting the Little Victories

One Day at a Time Means Staying within Yourself

From From https://www.aspenridgerecovery.com/blog/what-does-the-saying-one-day-at-a-time-mean/

I take it in with gratitude. I trust people who have been knocked down and get up again.

A Year to Live

It’s a practice, not a diagnosis.

“This day, as ordinary and uneventful as it seems…is one of the relatively few you have left. Do something worthy of it. When Death shows up to give you news you didn’t want and see coming, may it interrupt you in the act of really living.” John Pavlovitz

On a day when I had no energy, i drove out to our National Park and encountered this fox. 

I read A Year to Live, by Stephen Levine quite awhile ago, long before all this cancer business. Even gave a talk on it. Now, I look back on that time with a bit of irony. How much I didn’t know, I think. I didn’t know how visceral it was to really do this practice with the distinct possibility that it could be true. I didn’t know how BUSY it would be—in the head and the heart and the mind. A year left to live, unless you are taken over by pain or incalculable fatigue, or nausea so powerful it is your only reality . . . all of which I have had. . .  so I know how miraculous it is to hold that thought without those debilitating elements.  Because a year left to live means so many things it is overwhelming. So, which is more important? To rest when you need it, or soak up every minute of time with your family, to exercise, or to speak your truth to power, or to organize and settle your work legacy (in my case, this has been very important), or to be in nature, or recover and enhance spirituality and faith, or to eat well, or to celebrate and talk with friends and say all the things you need to say, or maybe write that book and fully encourage your creativity to bloom? The answer is all of the above, of course. But I didn’t know how true that was until I had cancer.

Sometimes, I go hard . Too hard. I feel good. I take the exercise class and secretly compete out of the corner of my eye. Then I schedule a walk and we move fast. And by the time I do all the errands and greet all the people my small town requires, I feel suddenly perilously close to exhaustion. Driving home in a low blood sugar fog, images chase each around in my head, as if I almost drowned—and now the lapping water I’d been playing in is rising—and I start to panic. What is it? The answer is short and stark and laughably simple. I’m tired.

Modeling our Christmas elephant pants

Fatigue was something I didn’t mess around with during chemo. It caught me and held me with fangs I couldn’t escape. Yes, I have PTSD about being so drained and weary I couldn’t even rise to level of normal life functions. Don’t worry, I tell myself, it will pass. Still, I come inside with a single minded focus. To recover. Food and drink and rest. I sigh with the pleasure of it: to be in my own home, watching birds out the window, a story at my side, no one to answer to for as long as it takes to convalesce for a few hours—until my body regains its delicate energy once again.

Steve at the Fairy Ring on Skye, Scotland

The following is from a blog I have appreciated.

“In an article by Arthur W. Frank, he suggests that we are living in a ‘remission society,’ where patients are “effectively well but could never be considered cured’’’. In Frank’s ‘remission society,’ the patient is always caught in a void between health and illness.

http://gettingclosertomyself.blogspot.com/2009/07/what-does-it-mean-to-live-in-remission.html

The Loneliness (and Sometimes Anger) of Cancer’s After Effects

When I go to see my counselor, often the thing that pours out of me is loneliness. People are quick to remind me that “everyone has something”. Of course. I know that. Permit me just a little frustration for all the hours spent with Dr. Google.

The experience of loneliness seems to be one of the unarticulated experiences of such a survivor. I wake up with a sudden feeling of faintness. There is no one to ask. The busy doctors and nurses, in their overwhelmed world, can barely keep up with the demands of their acute patients. Hours go by, keeping company with a symptom that is so elusive. Is it tied to the vomiting episodes I had last week? First order of business is to get lab tests. My slow scrutiny of each value must be nothing like the doctors’ quick perusal. They look for acute warning signs. I am looking for warning patterns.

I know I get arrhythmias. During chemo, my heart suffered mightily enough to be challenged by an effusion which was threatening enough to really get the doctor’s attention when I was in the hospital. But in the steps leading up to admission. That’s what I am trying to prevent.

 Is it the powerful drug “dragon” called Ponatinib? The label names many possible heart conditions that it could cause. I try to check off the possibilities, knowing full well that many, possibly including my doctors, would call this behavior Hypochondria. Okay, I say. I understand that you have never been attacked with chemical agents before. You have never had sudden diabetes brought on by prednisone. You have never had to wear a holter monitor for a month because your heart was freaking out from the chemical assault. You have never had to count out immunosuppressants that both threaten and save your life.  I can’t be the ideal patient (quiet and submissive). If it gets bad enough to be acute, they will be there. But until then, I need to participate in everyway I can.

Lastly. Gratitude. The Most Powerful Medicine.

I am grateful for so much I cannot list it all. I am grateful to have this IV line that is right now in my vein pumping IVIG to replace the B-cell that get gobbled up by the Car T-Cells.

“Immune globulin products from human plasma were first used in 1952 to treat immune deficiency. Intravenousimmunoglobulin (IVIG) contains the pooledimmunoglobulin G (IgG) immunoglobulins from the plasma of approximately a thousand or more blood donors”.

https://emedicine.medscape.com/article/210367-overview

Think about that. A thousand or more donors. Thank you, unknown altruistic peeps! Thank you, quite literally, for my life.

Ancient Oak, Ireland