Yesterday marked exactly one year from the night my mom signed into her online chart and read her test results, alone, at home, at night. (Don’t try at home. Not the best way to be notified that you have a terminal cancer.)
That diagnosis changed everything. It changed big things, like the deep feelings of shock and musings of mortality that would pour over us, and it changed small things, like how we should organize a million prescription pills on the dining room table so we don’t accidentally kill Mom. We sweated small stuff, and big stuff, that we had never considered before.
So, while the rest of the world may have wished a “Happy New Year” on the 1st, our year really began back on January 12th, when we were forced aboard a tilt-a-whirl that tumbled and spun us through 2018.
Through the early tumbling of diagnosis and testing, Mom remained hopeful that it would be all right; after all, she didn’t have any symptoms! When we went home to await results after a critical final diagnostic test, she suggested hopefully that, if the results were good (and the cancer was early-stage), then she would uncork the 1999 Chateau Mouton Rothschild from Bordeaux that she had otherwise been saving for her retirement from medicine someday.
The results, as you know, were not good. The phone call told her it was not early-stage. Her bone marrow was saturated with cancer.
Would she even have a chance to retire from medicine?
She hung up the phone, stared at it a long moment, and grumbled, “What the hell. Let’s open it.”
And it was, like, the least impressive, most mediocre glass of wine, ever. Whether that’s due to our stellar critical-tasting abilities or our mental disposition is anyone’s guess. Whatever, it doesn’t matter anyway, right? "The wine’s gone, the bottle’s gone, the price is gone, and just like that, like a life can be gone…” (Personally, I thought the wine was pretty good, but I didn’t dare tell her.)
She faced despair. That’s a dark, dark place to be.
One of the first things she mentioned was that she never thought that her elderly cats, almost 20 years old, would outlive her.
Treatment began, and so did the clock. Her first three months of chemo were relatively kind to her (though the steroids were not), and so she packed in as many activities as possible before her transplant. We celebrated birthdays. We flew to Florida. We went to Valleyfair. We planned adventures for 2019. We tried to do as much fun stuff as possible in the time before her transplant, because not everyone survives these procedures.
Her friends, family, and colleagues sent texts, mailed cards, wrote emails, and called with encouragement. That helped lift her out of her deepest despair, and I cannot thank you all enough for reaching out from your busy days to brighten hers. Every word helped.
However, she learned pretty quickly to not seek too much encouragement from people who had survived bone marrow transplants ahead of her: “I made it a whole 15 months before my cancer came back!” is not encouraging. So, like a pregnant woman shutting out all birth stories to avoid the horror stories, she distanced herself from that particular brand of support for a while, and dove into her faith instead. Her cancer is terminal, but her healer is eternal. She spent hours each day (or night, buzzed from the steroids) poring over her scriptures as if she were stranded on a desert island with just one book. And slowly, quietly, she shifted – from despair, to a steadier hope, and then to the firmer footing of certainty; this will turn out okay.
But then came the melphalan with her bone marrow transplant on June 20, and I’m pretty sure she wanted to die at that point. I’d try to describe her experience, but adjectives fall short; the best description of just one single side effect came from her: “It turned the back of my throat into hamburger.” There were myriad other side effects I’ll spare you from, but suffice to say that she spent weeks, many weeks, being ravaged by drugs, all of them competing in her body, causing great pain and retching and misery. If the apocalypse had been scheduled for late June, she would have rejoiced.
Alas, no rapture. She had to survive, spending weeks in the ICU unable to swallow, then more weeks at home. She got better slowly, but at the frustrating pace of taking two steps forward (and by ‘step’, I mean something like, ‘She can now swallow her own spit!’ and ‘Hey, she doesn’t want to die today!’) and one step back. I prayed for the health of her cats, not only because she needed their faithful companionship through her fragility, but because she saw old Tigger hack up a hairball, and I thought she would collapse from her sympathy. She solemnly told my father that if Tigger kept puking up hairballs because he’s at the end, then they should consider putting him down, because no creature should have to live with that kind of retching. (We hid him in the basement for the rest of that day.)
The funny thing is that she doesn’t remember that conversation at all. She doesn’t remember much from that time, so if you want to know anything from that period, don’t ask her, ask me. The drugs in the ICU wiped her short-term memory. She said the same things over and over. I learned to stop responding as if we’d already discussed it, especially when she was repeatedly complimenting my hairdo.
Once we got her home from the ICU, we kept thermometers all around the house to watch for new fevers that might suddenly appear. Fevers go downhill fast in transplant patients. My aunt Karen told me before she flew back home: “Jenny, if you check your mom’s temp and you see a fever, get your dad involved. Your mom will tell you she’s fine, and you’ll be tempted to believe her, because she’ll sound like a doctor.” Sure enough, she spiked another fever, and it took two adults, three thermometers, and about a dozen 103-degree results before mom sulkily agreed to go back in. I had wondered if we could legally chloroform her.
She got better slowly, two steps forward, one step back, inch by inch, milestone by milestone. Swallowing water. Swallowing oatmeal. Feeling hungry. Feeling less pain. Remembering more conversations. Sipping wine.
Going to Door County was the greatest milestone of all – proof that she was better enough to have some normalcy come back into her life.
She got see her grandkids again, and they, being young children faced with a life-changing event, were fascinated by, of all things, Nana’s baldness. Elly said Nana looked like Voldemort. Then Nana watched the Harry Potter movies, so Nana now knows exactly what Voldemort looks like, and is not quite sure what to do with that particular association.
Day by day, small miracles brought back health and strength, and shifted us from surviving to living again. And the tilt-a-whirl that tumbled us and spun us through the year eventually, miraculously, dumped us back out. Is this really the same place we got on board? We’re all accounted for. Our surroundings look familiar. Did 2018 really happen?
The house is back to normal. Toys are out for the grandkids again. We no longer keep a thermometer on every countertop in case a fever spikes. We don’t even know where the antibacterial wipes, once so ubiquitous, have gone. The blue puke bags are tucked in a closet, for kids to use on road trips.
Mom is back to work at Allina with her microscopic friends and foes, as well as her beloved human colleagues. She’s taking long walks through her park, no matter the temperature. Dad is traveling, creating, consulting again. They’re packing for a trip to their place in Arizona, just as they normally do in the wintertime.
Through the holiday season, the house looked much as it had the year before. The tree was lit, the boughs were up, and Christmas morning saw all three grandkids tearing into a mountain of gifts again.
But even though everything seems back to normal, some things are slightly different. Of course. It’s like we’ve walked back into a familiar room, and the furniture is all there, but each piece has been moved two inches. You bump into things.
On my mom’s dresser stands her styrofoam head, ready to hold her wig each night. Her closet holds her normal wardrobe, but she has to shop for new clothes now that she’s two sizes smaller. Appointments with the U of M have been peppered into her schedule for her vaccine trial & follow-up. A simple cold can flatten her if it’s a virus that her baby immune system hasn’t seen before. And I can actually keep up with her on her walks now.
Things have changed – most significantly, the characters.
Mom, always a frugal saver, is now purging her house of items she no longer needs, because stuff doesn’t matter as much as people. She’s texting like a teenager, constantly reaching out to friends in tough spots, because she knows the power of encouragement. Dad’s work trips are shorter now, so he’s away from home less. Keith and I accidentally refer to our kids as being one grade younger than they really are, as if the summer transition up never happened, because summer didn’t really happen for us. I am no longer working, having left my job to focus on my own home life. And even my mom has officially submitted her retirement contract to Allina, paving the way for her to unwind from, and eventually retire from, her job over the next three years.
Throughout 2018, really until yesterday, we would marvel that, “At this time last year, everything was normal.” That changed on the 12th, our new year marker, and now our reminiscences through 2019 will be, “At this time last year, can you believe…?” And we’ll remember the tilt-a-whirl ride, one date at a time, amazed that we all made it off the ride, alive. We know that not everyone does.
The prognosis for Multiple Myeloma has improved greatly in recent years, but the doctors are still very clear about one thing: this is a terminal cancer. According to them, it’s not a question of “Will it come back?”, but rather, “When?” They expect a few cancer cells to have survived the June 20 bone-marrow apocalypse. (And then, of course, they will suggest doing all of this 2018 stuff over again.)
But the vaccine trial in which Mom participated provides a new level of hope – the immune system’s own preemptive ‘capture’ of any cancer cells that might be manufactured again. She just got test results back last week confirming that her most recent biopsy was absolutely perfect, down to the molecular level. Complete remission. It appears that the vaccine has ‘vacuumed up’ the rest of the cancer cells that the chemo might have missed, and she hopes that it will continue to vacuum up any that might be manufactured in the future.
She did, in fact, outlive at least one of her cats. Princess, her faithful and elegant tuxedo cat, died last week. She will be profoundly missed. Tigger is still with us, loyally and warmly snuggling with mom on the couch when she’s flattened by a winter cold. Whether or not she’ll outlive him, too, is part of the unknown future, but I’d put my money on Mom at this point.
Our mission of 2018 has been accomplished. She survived it. And she’s living again. It is a privilege.
Again, I can’t thank you all enough for your encouragement through our crazy 2018. Every ‘ping’ brightened her outlook, and such brightening was desperately needed, day by day, week by week.
Thank you for following her story here. You have taken time out of your busy days to see how she’s doing. We will let this journal remain ‘live’, and we will occasionally post updates if anything changes, but for the most part, we expect all to be quiet on the home front for a while.
As much as I enjoy writing to you, dear wonderful friends who have made my mom & dad’s life so much better with every single word of support and faith, I hope that it will be a long, long while before I write to you again here.
May the Lord of peace himself give you peace at all times in every way. The Lord be with you all.