The Failed Keytruda Experiment
We thought Jimmy Carter’s wonder drug, Keytruda, could be a miracle for me. At first, it seemed like it had vanquished leukemia. But cancer is sneaky and it hides. After the second infusion, Steve and I were told a few leukemia cells had re-emerged. Given cancer’s remarkable to replicate, it would soon overtake my sense of good health. They took me off Keytruda.
Autoimmune Reaction: A Tornado of Pain
Keytruda stays in your body a long time. So you can have a delayed reaction, weeks after an infusion. Now, with the Virus paying havoc with the whole planet, we are learning more about the immune system. Stimulated too much, it can gain too much power in the body and attack.
My immune system went to war. Starting with a burning sensation in my feet, a tornado of burning nerve pain, like a cross between shingles and bee stings, traveled up my body. It stopped, thankfully, short of my face. I had gone into a delayed autoimmune reaction to Keytruda and it took a lot of the powerful steroid, Prednisone, to stop it. All that miserable time, the cancer grew, unchecked.
(Immunotherapy is amazing but it does have side effects.)
Finally, the autoimmune tornado subsided under the weight of Prednisone. In September, I entered the hospital for a new treatment, not knowing what to expect. In one month, the cancer in my blood had gone from under 1 % to 25%. That’s the way leukemia grows!
Meet Blincyto and Neurotoxicity in The Hospital
Blincyto (blinatumomab) is another immunotherapy drug, targeted for leukemia and known for neurotoxicity side effects on initial hookup. I went in to the UW Hospital on a golden September day, with a plan to stay just a few days. On the second day after the infusion, I started losing the ability to easily speak and walk. Can you say the date, the year, where you are? Over and over again, I was asked. When your brain is inflamed, you (may) know the answer but you can’t say. It’s like a stroke, I’m told. But it comes from inflammation, the body’s reaction to immunotherapy. I couldn’t get up and walk either. They alarmed my bed so I couldn’t sneak off of it, much less go for a walk in the halls.
This was a time like being lost in in a re-circulating nightmare, the ones when you pack endlessly and cannot seem to ever make it to the train. What should have been a few days lengthened into nine.
A Long Routine with a 24 Hour IV
After that, I had two more hospital visits and like before, they were more precarious than I wanted. For four weeks, I would wear the fanny pack holding the infusion that led to the PICT line in my arm. Every week, we got a delivery from a homecare provider. After a month of that, I got to take the bag off and live relatively free for two weeks. This was repeated for five cycles: September to April.
A Bardo for the World: Leaving One Reality, Entering Another
And so, I am back in remission, although I have learned that remission means you don’t have cancer, but you could get it back any minute.
Always before, I went through these stages by myself. Losing the old Normal, entering isolation and in that liminal space I came to know as the Bardo, trying to adjust to rules of the new Normal.
Now, on this foggy morning in May, the World lives in the new harsh reality of Coronavirus. Steve is recovering from getting his ankle rebuilt. We have been in near isolation for weeks. This is like remission times the population of the world. I wrote in the blog before the second relapse: “We are all partly shattered by life and we all live in precarious but often mysteriously beautiful circumstances. I think the difference is living in remission means you are aware of that. Many people aren’t . . . Remission is kind of grateful and fearful and mixed up and present and remote.”
Replace remission with coronavirus time. It fits.
But here’s what’s different: I feel like everyone has joined me in an uncertain remission. Each day we feel our way, tentative and aware of life, holding it gingerly and moving ahead slowly. Afraid and not afraid, we do what must be done.
One Day at a Time . . . that’s what I learned from my past remissions. We don’t know when the other shoe will drop. We don’t know if we will be okay. We don’t get a choice on opting out. Learning to live with this truth has given me a kinship to the Recovery Community. Each day will have its own character — and some will be lazy, rebellious, sullen–some will be hopeful, beautiful–miraculous, even. We start to notice how thin our flame of life can go without extinguishing itself. We start to notice we can be gritty. We start to notice we can be grateful, even when it’s hard. We start to notice that life cannot live in fear of death. We start to notice and find our truth and stand on it, because nothing else will hold us.
Deep deep thanks for your sharing. And admiration too.
Thank you, Shann, for sharing your story with us. You are in the hearts of so many! You have been so brave and thoughtful in expressing your journey. I love seeing pictures of your beautiful family- they must give you such peace. xoxo from Sue and Ken.
Notice you posted this at 3:36 am. I was up then too. Did you see any of the meteor shower? (It was actually the tail of Halley’s Comet). “The greatness, rareness, muchness, fewness of this precious only endless world…”. Thank you for this second half. I hope there will be many more.
Thank you Shann for the most uplifting thoughts and truths I have ever heard. I will keep and savor these always. I pray for you and your family and I never stop thinking of all the wonderful times we had together. One day at a time, may God bless us.
Thank you also for the wonderful pictures.
It’s your grit and gratefulness that I love about you. (…and you never whine!) Hugs
Lovely, gifted writing as always, Shann, and so valuable to everyone. Yes, the immune system is amazing, powerful and unpredictable, sort of like the genie in the bottle who, once released, behaves in surprising, unpredictable ways, usually critically helpful, but sometimes wantonly destructive. The immunological army knows only knows to do one thing–fight–and when they wage battle on the wrong target things go very much awry. I’m so glad that army finally retreated and things are back in balance.
Ms. Shann your journey is so relevant for us all to consider. I keep learning important things about what one should expect, but one should hope never to need. I told you one time when we met that your strength you have shown through these battles was so impressive, but I doubted I had the commensurate strength. I hope to not find out.
Be as well as is possible and with your family I know you have a great support system. Virtual hugs.
As always, Shann, you have vividly, thoughtfully, beautifully relayed not only your wonderful inquisitiveness and zest for life but the correlation to the position we are all in today. ‘In remission’ takes on a new meaning. Our ‘mission’ during this time must be how we each can have a portion of what you express applying it to life so that together we can emerge into the precious world again with renewed hopes for an even better one. Take Care. Be Safe.
I keep thinking of the missing column at Roche Harbor. We are all responsible for each other.
Thank you for another beautifully-written epistle, exuding courage and appreciation of beauty.
I especially like the line, “We start to notice that life cannot live in fear of death.” [I understand that this does not mean to live recklessly.]
Here on Chena Ridge, with Mom (Joan) now 89 years old and in fairly good health we continue the activities of seasons: planting, repairing, seasonal maintenance, daily balance and brain exercises.. There is the slightest green hue to pasture and trees that I trust will burst into bright evidence of renewed life within days. We limit other-people exposures as per medical recommendations and do not feel overly deprived of those contacts because there is so much to do about the place.
Hoping that remission continues long and with many moments of wonder & beauty, and that Steve’s ankle heals well, Peace. Heather K.
How well we now know some of what you feel in remission. You described it perfectly. You must have both amazing and scary dreams. I certainly have during this pandemic. Thank you for writing your thoughts and feelings again on this blog. It helps to understand both what you went through and what we are going through. So much love and health to you. Jill
“We are all partly shattered by life and we all live in precarious but often mysteriously beautiful circumstances.”
I live in a small efficiency in a Senior Citizens building, alone, but I also have a great view out the 7th floor window to the trees, the chapel and goings ons below…….and my kids take care of me. I am thankful. As I know you are too. Onward gcp
Oh dear Shann. When will it ever end? What you’ve been through I can’t imagine myself ending up with your equanimity. I’d be a dithering mess.You are changed by the entire ordeal, correct? Of course! Your last paragraph illustrates how your suffering has opened new insights. There’s an improv phase, from Brazil – ‘getting comfortable with the uncomfortable.’ You’ve always been a wise person. I love you for your warmth and friendliness, and your wonderful laugh.
It hurts to read of your suffering. Through it all your spirit remains indomitable.
I have been in such a quiet place of solitude during this time of “retreat” that I have reflected on your posts for a while before responding…
Each time you share, Shann, I eagerly read your posts and then go back to read them again, feeling more each time. I am so drawn to your raw offerings, sharing seemingly without filter- your simplest joys and endless gratitude, the worst of the hardships, the insights and wisdom you gather along the winding river. I get to walk beside you for a moment because you reach out from deep inside your heart, always. I hope you will publish your writings, just as they are, like a personal journal. The depth of your vulnerability and wise insights are more than comforting for so many different paths humans walk while in a body on Earth. I want more people to hear your voice.
Weaving together the experience of isolation in your journey with that of our global “sheltering in place”, gives me comfort that you feel a little less alone and that we all can feel more together, while alone. I have practiced several death rituals from various cultures to prepare for my own inevitable departure and to refreshen my ability to live more in the present. The coronavirus has given me another opportunity to breath into my mortality and hold closer the people love and the daily rituals that bring me joy, especially my intimate connection with the natural world.
Shann, your writings always help me appreciate, even more, all that I love about my life. Sending lots of love across the island over to your neck of the woods – for your continued remission, Steve’s healing ankle and for your precious grandchildren.
I wanted to pass on a poem by Nancy Wood and one of my favorite Mary Oliver poems in case you haven’t come across them. I think you will appreciate them.
ON THIS EARTH DAY, by Nancy Wood
My help is in the mountain
where i take myself to heal
the earthly wounds
that people give to me.
I find a rock with sun on it
and a stream where the water runs gentle
and the trees which one by one give me company.
So must I stay for a long time
until I have grown from the rock
and the stream is running through me
and I cannot tell myself from one tall tree.
Then I know that nothing touches me
nor makes me run away.
My help is in the mountain
that I take away with me.
Earth cure me. Rock receive my woe.
Rock strengthen me.
Rock receive my weakness.
Rain wash my sadness away.
Rain receive my doubt.
Sun make sweet my song.
Sun receive the anger from my heart.
SLEEPING IN THE FOREST by Mary Oliver
I thought the earth remembered me,
she took me back so tenderly,
arranging her dark skirts, her pockets
full of lichens and seeds.
I slept as never before, a stone on the river bed,
nothing between me and the white fire of the stars
but my thoughts, and they floated light as moths
among the branches of the perfect trees.
All night I heard the small kingdoms
breathing around me, the insects,
and the birds who do their work in the darkness.
All night I rose and fell, as if in water,
grappling with a luminous doom. By morning
I had vanished at least a dozen times
into something better.