“Listen, I can’t talk now. I’m in the hospital, and somebody just came into my room. Call you later!”
The tiny, fit lady punched the OFF icon on her iPhone and laid it on the bedcovers, then turned a radiant smile in my direction.
“Hello there!” Her smile was all teeth, her face open and bright. I wondered at the reaction of the person on the other end of the phone to the news that her friend was hospitalized. I decided not to pursue it.
“Hey,” I replied, trying to look upbeat and encouraging underneath my N-95 mask. “My name is Curt. I’m a volunteer, and I come to spread joy and happiness in the cancer ward.” I turned to get an obligatory shot of hand cleaner from the dispenser by the door.
“Well, it’s nice to meet you!” she exclaimed. She sat up straighter in bed, rearranging the pillows to remain upright.
I explained that one of the nurses had suggested I look in on her. I’ll call the patient Millie, not even remotely close to her real name.
We talked way too long
Millie and I talked for nearly an hour. She seemed to want the conversation, or maybe graciousness is merely her default. I had the strong impression she was endeavoring to put me at ease. It worked.
Millie is a 60-something, and the big news was that Millie and I have an identical cancer diagnosis. She is the only person I have met with that particular rare variant of Acute Myeloid Leukemia.
The nurse, following HIPAA guidelines and hospital policy, had not shared this with me. But she knew both of our cases and was confident it would be a worthwhile meeting.
Millie and I shared stories about our skunk pill, specifically designed to attack those mutant and deadly white blood cells mounting a palace coup from our bone marrow.
How rare is rare?
By my unscientific and unauthorized reckoning, the cancer unit where I was treated in 2022, which is the same place where Millie is now, sees perhaps 250 patients a year. In the last 5 years, I believe they have now treated 3 patients with this rare diagnosis.
That comes to something like 2-tenths of 1 percent of the cancered population.
It’s just a guess, although an educated guess. Still, the arithmetic should be taken with a large grain of salt.
And, as a sobering thought, they probably treated others prior to the introduction of the skunk pill in 2017. But because the med was unavailable then, those people are no longer with us.
God bless medical research that allows production for such a tiny sliver of us. Someplace, there is a lot of productivity in this economy, to afford an effort like that.
No side effects. Go figure.
Millie had lots of questions. She had already completed her first round of chemotherapy with zero side effects. Lucky her. I explained what I had experienced,, and expressed my sincere hope that she may continue to avoid the nasties. (I am by no means convinced she will, however.)
At length, we talked about the lack of scientific data supporting long-term estimates of survivability.
“The data I have read,” I told her, “suggests that with an uncomplicated case of AML, you will have a 25% chance of living 5 years past the diagnosis. That is not a pretty picture. AML is an aggressive blood cancer. It’s a killer.”
“What about with this variant we have?” she asked.
Mortality is suddenly closer. Maybe.
I met her eye. “I’m no doctor, and I can’t tell you with any authority. But the studies I have read show that it cuts that chance in half. With this variant, your survivability drops to the 10-15% range.”
Millie accepted that news. “But the drug they have us on is new. Doesn’t that help?”
“My oncologist thinks so. I am in remission now, and he looks at my lab work every 60 days to keep careful watch on the blood levels.” I shifted in my chair. “But look, Millie,” I said, “the fact that this drug is so new makes all the studies obsolete. There are so few of us with this variant, and it is so recently available, that no one knows. There are no long-term studies.”
“So we don’t really know whether it will keep the bad stuff away or not,” she concluded.
“Right. So far, my case has surprised the doctor with numbers that are much better than he expected. But time will tell.”
“All we can do is hope that it works.”
I smiled, which maybe she could discern below the mask. “Well, Millie,” I pointed out, “you could always donate your body to science and the rest of us could learn a lot.”
She laughed easily. “I’m not done with it yet!” she said. “I want to get back to tennis!”
A rare cancer, a rare gift
I found the visit tremendously encouraging to me, and I hope it was to Millie. She is a rare bird. I expect the nursing staff fights over who gets to care for her. She spent some time describing to me the bag of candy she had ordered for them.
“I didn’t want just a bag of candy,” she asserted. “The pieces need to be individually wrapped. I’m done with this ‘stick your hand in and grab a piece of candy,’” she declared. “That can kill you!”
Millie was delighted with her signed copy of Alligator Wrestling in the Cancer Ward. I suspect she will read it. I pointed out that additional copies are available, there in the unit, if there is someone else who needs the message within.
The book is a gift from some of you. Thanks for making your contribution to Via Christi Foundation which directs copies of Alligator Wrestling to this unit. The book opens the door for me to patients.
Rarely is a conversation as encouraging as was the one with Millie. It was a true gift that I shall cherish. Not every patient interaction is that positive. Some are downright discouraging. I am reminded of what the Apostle wrote in 1 Corinthians 15:58:
“Therefore, my beloved brothers and sisters, be firm, immovable, always excelling in the work of the Lord, knowing that your labor is not in vain in the Lord.”
You can help
If you have not done so, please consider making your own gift to Ascension Via Christi. Find a link in the newsletter version of this post, or go online to Alligator Publishing and find the menu link to Donate to Via Christi. A hundred-dollar gift will keep us in books for another couple of weeks.
The link is here.
Your gift shall not be in vain.
She Meets Disaster with a Smile