Journal

Journal entry by Wendy Slattery


[from Jennica]

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.

Signing off,

Jennica

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Journal entry by Wendy Slattery

 
 
Not to get distracted, but let me mention a few truths that I have discovered about hair for those going through chemotherapy. 
 
#1. Hair does not grow when you measure it every day with a tape measure. (You know, like a watched pot doesn’t boil…kind of thing?)
 
#2.  When they say hair “grows 1/2 inch per month”, they mean fingernails, not hair.
 
#3.  It grows out stick straight, not curly.
 
This seems to be helpful information.
 
In spite of this cancer, the old me is reemerging with the joy and optimism that I had lost when I was in the thick of it. Terry says I have my sparkle back. It helped to go back to work at Mercy Hospital. It was wonderful to see my dear colleagues and many of my patients. It fit like a glove. I wear a mask every day and have managed to not catch the common cold that might lurk on every door knob and keyboard in the hospital. Everybody was coughing and blowing their nose when I came back on September 24th.
 
On October 25th, I received the first of three personalized, custom-made, designer, “one of a kind”, vaccines against my multiple myeloma. They told me at the U of M that I was their first vaccinated patient in Minnesota with only a handful of other Minnesotans in the study.  (Hmmmmm, why would that be? Didn’t anyone else qualify? Were they afraid? Did they not understand how a vaccine works?)
 
It was an exciting day. Like a kid getting ready to go to Valley Fair, I told everyone who would listen. …..Three more days ……two more days ……one more day……..
 
When I arrived at the Bone Marrow Clinic on October 25th, my research nurse scurried over to size me up.  I could not be sick. “Do you feel OK?  Do you have a fever?  Do you have any problems?”
 
When she was satisfied that I was in good shape she then called the St. Paul laboratory to courier over my vaccine to the clinic.  It would be thawed out and a few last quality checks would have to be done. Then it would be loaded into a syringe. I imagined it was coming over in an armored vehicle.  And a marching band would be nice.
 
“No problem,” I said, “I will just turn on my Audible book about a racehorse and let the minutes pass.”
 
Two hours later the little Styrofoam box packed with ice arrived. She took out the loaded syringe. It was like she was holding my ticket for a journey for which I had no idea where it would take me.  I couldn’t help but marvel at the science that went in to making that 2 cc little product that was destined to go into my right leg in the next few minutes. That is all me!!! Those are my Dendritic cells fused with my deflated cancerous cells. There was nothing foreign about it.
 
“Oh, by the way,” she said. “Today the study was closed to any further participants.”  They had enough people (189) in 13 states. How lucky for me, I got in under the wire.
 
There will be two boosters in the weeks ahead to make a total of three vaccines. One in November, and one in December. They also give 4 daily shots with each vaccine to stimulate my very young immune system with the intent to multiply and get excited. They need the encouragement like a pep fest before a junior high homecoming game.
 
The year is almost coming to an end. The pages of the calendar will soon turn over into 2019. When we get to January 12th I will be reminded of that awful Friday night while I was working in the ICU, looking up my blood work on the computer at the end of the day and seeing for the first time that I had a terminal blood cancer. I didn’t need anyone to tell me. I saw it myself. It was surreal.
 
Who would have guessed that before the year would be over, my inconsolable despair would turn to eternal optimism on December 20th with the third of three vaccines designed for my cure. For that is my hope. I think it is a God-thing.
 
Terry and I stumbled one morning in our prayer time onto Isaiah 43:19. My paraphrase: “Look, I am doing a new thing. Don’t you perceive it? I will make a way where there is no way.”
 
Sometimes you just have to believe in the impossible.
 
 
God Bless, and have a Happy Thanksgiving!!!!!
 
Wendy
 

Journal entry by Wendy Slattery


It is a beautiful September day! Did it really all happen? Each day gets better and I get stronger. I don’t remember when I took my last nap. Food is starting to taste better, but my wine taste buds have to start all over with their education. Oh well, it’s a small price to pay for added years.

Last week I was excited to find out that I was randomized into the vaccine arm of the Multi-state Phase 2 study on vaccines for Multiple Myeloma (instead of the placebo arm).  As an Infectious Disease doctor I was ecstatic!  Yes!!!!  All vaccines are designed to prevent various infectious diseases using one’s own immune system – now the world of oncology sits on the brink of their own breakthroughs for doing the same.

I will get vaccinated against my own cancer cells for the purpose of going after the remnant or the hiding “sleepers” that managed to survive the nasty melphalan (the monster chemo). Unfortunately, complete remission does not mean cure.

The process is mind-boggling. Next week the University will place a central line, called a Hickman, in my neck and hook me up once again to the “apheresis” unit that looks like a washing machine. They will collect cells in a similar way to when they collected stem cells from me in June. But instead of stem cells, they will collect a certain white blood cell called the “dendritic” cell. 

After a day of collection, they will take the cells back to the laboratory and ‘fuse’ them with my inactivated cancer cells that were collected back in February. I really don’t know how they do it. Perhaps it’s done magically with Elmer’s glue, or maybe duct tape. 

When they combine these two cells together (the good one with the inactivated bad one), it becomes my personal vaccine. It will then be injected into my arm like any other vaccine.

Think of it like the sheriff holding up a wanted poster to the U.S. Marshals-in-training (my young immune system) to “go after the rest of these bad guys”.

I am counting on Wyatt Earp and his Marshals to wipe out every last cowboy (I mean cancer cell) in Tombstone. Do I mind being a guinea pig? Heck no!!! I hope to be one of the first beneficiaries to a new frontier of oncology treatment using one’s own amazing and powerful immune system!

Perhaps someday this will be the foundation of a real cure (and not just remission) for multiple myeloma and other types of cancer. 


Yes, I will be at each grandchild’s wedding!

God bless,
Wendy

Journal entry by Wendy Slattery


Mom’s critical first 30 days after transplant, those most harrowing and vulnerable days, ended on Friday, July 20. 


She hit every possible ‘hiccup’ along the way.  I know you’ve been following her story faithfully; my recap here will be brief.


In her first few months of treatment this spring, she had a dangerous immune reaction to a powerful but necessary antibiotic.  And steroid-induced heart issues.  And an unexpected need for Cytoxan chemotherapy, among which side effects was the retching that threw out her back.  (I’ll spare you the others.)  And then constant back pain that couldn’t be un-inflamed, because NSAIDs (ibuprofen, Aleve) were off-limits during treatment. 


And that was all before transplant. 


To prep for transplant, she was treated with melphalan (chemotherapy), a derivation of ‘Agent Orange’ originally developed for chemical warfare; we now see why.  We knew that chemo would bring some nasty side effects, but no one was prepared for this.  One of melphalan’s tricks is to ulcerate a patient’s mucosal membranes, causing anything from mouth sores to diarrhea.  In Mom’s case, it affected her throat, all the way down to her stomach, and, in her words, turned the back of her throat “into hamburger”.  Nausea was endless, and retching dangerous.  Swallowing became such a trigger for pain & misery that they eventually bought her a little dentist’s vacuum to suck out even her own saliva from her mouth to avoid it.


But she got an incredible 8 million cells transplanted back into her body, and they began to circulate in her ravaged bloodstream, finding their marrow homes.


Day 3 took the worst possible turn for a bone marrow transplant patient: septic shock.  It’s unbelievably odd that she survived that.  Her next two weeks in the hospital were the worst in her life, not least because the melphalan, strep bacteria, and a ridiculous number of both complementary and conflicting drugs were all pushing & shoving for turf in her body.


Finally discharged, she spent the rest of her ‘First 30’ days at home in isolation, leaving only for daily clinic visits at the U of M with me or Dad.  We checked her temp every few hours, knowing how quickly things can change when your white blood cells are counted in the single digits.  There was another trip to the Emergency Room when she spiked a bad fever, most likely due to a long-dormant fungal infection taking advantage of her immune system’s power vacuum to seize territory like a disgruntled Roman general.  The medication to halt its progress, though, stressed her liver.  More hiccups.


But each day took her a step further from Melphalan, and a step closer to full blood counts; the hiccups slowed down, her appetite reemerged, her naps shortened, and her eyes brightened. 


The only question left was: did it all work?


On Day 29, she looked at her chart to find her most recent bloodwork results, and was disappointed to see some remaining multiple myeloma ‘markers’ (proteins manufactured by cancer cells) still circulating in her bloodstream.


But on Friday, Day 30, at her critical end-of-thirty-days appointment with her transplant oncologist, we learned that those lingering proteins have a long half-life – and must have been manufactured a while ago, because according to her most recent bone marrow biopsy results, the cancer cells themselves are now completely undetectable in her marrow. 


Gone.


He’s calling it “complete remission”. 


Yes; it worked.


The next day, my parents packed the Tahoe and drove to Door County – right on schedule.


Mom looks like a masked bandit here, with her warm hat & her surgical mask covering everything but her eyes, but she is here.  She still can’t drink more than a few sips of coffee in the morning, but Dad made it for her anyway and they sipped it by the waves of the bay this morning, as they have for thirty years now. 


We are in awe of the timing.  Between that initial Cytoxan delay and the sepsis (and every hiccup in between), any number of things could have derailed the already-tight departure schedule for this retreat.  And with three families booking a year in advance, rescheduling this tradition wouldn’t have been an option.  But, by the grace of God, we’re here.


Thank you for your prayers.  They were heard. 


Thank you for the food, and the gardening, and the encouragement, and the provision of friendship and family that carried my parents through the deepest valley. 


I can say with confidence that Mom is on the upswing (like, for real this time).  Her little stem cells are happily nested in their marrow, splitting off into white cells, red blood cells, platelets, and others.  Slowly but surely, they’re making enough cells to build an immune system from scratch. 


The next step is to get through the rest of these vulnerable Hundred Days with more upward recovery and increased strength.  Around Day 65, she’ll join a vaccine trial for immune research on cancer.  She expects to be back at work this autumn.  Within the next year, she’ll start receiving her baby vaccinations all over again.


But for now, she’s playing with grandchildren in Door County, and basking in the words, “complete remission”.


Thank you, all.

Journal entry by Wendy Slattery


It has been about a week since getting out of the U of M hospital, after a two-week stay. The days drag on because of the isolation. It is so true: a week of vacation goes much faster than a week on a diet.  So it is with me now.

Jennica gave a nice description of that infamous Day 3.  I thought I would share it from my perspective.

I remember getting into the car that morning and telling Terry I was just going to “rest my eyes”.  As told by Jennica, I became unresponsive, and he passed through the clinic and went straight to the U of M ER just three blocks away.  I only remember my door opening to many people standing around waiting to help me.  And then it was “lights out” for me.

From there they took me to the “stabe” room. This is a special place to resuscitate and stabilize the most critical patients arriving in the ER.  Generally there are many people, all perfectly trained to do their specific jobs simultaneously to save a life, and quickly.  I had dangerously low blood pressure.  My temp was 95°.  They checked blood cultures that ultimately showed strep in the blood.  I was in septic shock.  The bone marrow was not yet ready to join the fight. I spent 2.5 hours in that stabe room.

I remember none of this.  Terry would tell me later.  Apparently the ER had told him, “your wife looks a little dehydrated.” In retrospect, I am OK that they sugarcoated this for him at that time.

I didn’t know it, but the chemotherapy I’d received with my transplant was about to begin manifesting its worst side effects, too. 

The next several days would be my darkest, loneliest, most painful, and spiritually doubtful times I have ever had.  Where was God in this deep dark valley?  Why has he not heard my calls for help?  Was I to travel this road alone, and why?  Frustrated and admittedly angry, I prayed, “Why don’t you tear the sky open and come down here.  I am all done.  I do not want to be here anymore.”

Karen, Terry’s sister, is an ICU nurse on the heart transplant floor in a hospital in Indianapolis.  She graciously planned to come and be with me the first few weeks starting day four.  But most of that time I was in the hospital.  Nonetheless she was there at my bedside.  She hovered over my bed along with Terry and Jennica and saw to things that only a great ICU nurse could see to.  When we came home I learned about the sepsis and the 2.5 hours in the stabe room, and I burst into tears.  Perhaps, as I was dangling over the edge of the cliff, I was not alone after all.

Again, I looked at my cards, re-read notes and texts and CaringBridge notes, and was so overwhelmed with gratitude that I started to cry again.

Things will get better now.  It is only up from here.

The stem cells have now all settled in.  There was some pushing and shoving as they all found their places.  But there was room for all 8,438,000 cells.  They all seem to be well educated and from the same school since predictable labs (white blood cells, platelets, red blood cells) are now starting to show up… but none too soon.

I am getting stronger every day. There were more hiccups along the way but none worth mentioning now.

Today I got out my suitcase and started to pack for Door County.  Even though a week away, I know I am going to make it.  My family will be hovering, I am sure (making sure I mask up and follow the rules from my BMT oncologist).  But we will be together in the great outdoors.  It will be my first reunion with my grandchildren in many weeks.

Thank you for helping me survive this journey.  My garden continues to be so beautiful because of my next-door neighbor, Annie.  They were so many meals that fed Terry, Jennica, and Karen when I was in the hospital.  They saved the rhubarb custard cake for me, which was the only thing I could eat in the morning when I first got home.

And again, thank you all for your prayers that preserved me during my greatest doubts and darkest hours.

Today I am stronger for it all, and this experience has changed me.  May the suffering I have been touched with forever give me the empathy to see it in another, with the grace of God to express the words of hope and encouragement that touch us all for good.  Perhaps I hit the bottom to learn such a good lesson as this.

But by the grace of God, there go I.

Wendy

 

Journal entry by Wendy Slattery

[from Jennica]

After her bone marrow transplant, Mom came home and began her Hundred Days, of which the first 30 are the most critical and vulnerable.  (Anything can change fast!)

Daily trips to the U of M clinic would ensure regular evaluation, labwork, and any medications needed while her blood counts were plummeting (a result of the residual chemo still wreaking havoc on the remaining little red blood cells and platelets).

But on Day 3 (Saturday, a week ago today), my dad drove her into the clinic for her daily visit; as she rode along, she got quieter and quieter, and eventually stopped responding to him at all.  Once he arrived at the clinic’s valet dropoff and got a good look at her white lips & cold skin, he swung right past the valets and headed straight to the ER down the street.  Within minutes, she was whisked into excellent care.

She’s been in the hospital since then, and she might easily be here another week.  She’s just been slammed by the whole process of chemo & transplant, as many people are.  She can’t eat or drink anything, she’s in pain, and she’s exhausted.  But we’re actually, blessedly, still within the realm of ‘normal-ish’ reactions. 

Now blood cultures now show a strep infection – minor, we hope, since she’s lacking infection-fighting white blood cells right now.  The strep doesn’t surprise her too much, since this particular chemo causes ulcers to form in the soft tissue from the mouth downward, and a lot of strep bacteria hang out in the back of the throat, ready to break into the blood through ulcerated tissue.  But she says that they’ve put her on the right antibiotics for it; she would know.

At this point, we’re waiting for the chemo to ‘bottom out’, and for her counts to start trending upward as those precious little stem cells find their marrow homes.  These two things could happen any day now, and in fact we might be trending that way already: her white blood count was zero, but now it is one!  We have one white blood cell!  Progress!  

So now, friends, please pray for speed.  She needs higher counts fast to help fight the infection.  Pray for those 8 million stem cells to nestle into the marrow now and start multiplying like crazy.  Pray for the terrible side effects and horrible pain to subside now so that she can swallow again!  She’s been in pain for a very long time.  And pray for protection from any further side effects, infections, or complications.  

We know this will pass.  We know she’s tracking with ‘normal-ish’.  At least those of us who aren’t in the bed have an easy time remembering that.  But she could use some prayer to launch her out of this deep valley and into the renewal that’s just around the corner.  

God’s hand has been over all of this.  Her rapid plunge last Saturday happened in the morning on the way to the U of M, and she landed safely in good hands.  Her riskiest, most vulnerable first days are being spent under expert 24/7 monitoring with a sufficient variety of IV meds & nutrition.  (Without that Saturday plunge, we’d have been handling these days at home.)  You, dear friends, have blessed my parents with your thoughtful words, strong prayers, and fabulous food.  Mom’s neighbor jumped in to weed her precious garden, and even their cleaning lady didn’t leave the house without writing them a note of strong, prayerful encouragement that they deeply appreciated.  We are grateful for all of this.

I will keep you posted as Mom improves.  We’re at the hospital quite a bit with her during the day.  My Aunt Karen (dad’s sister) is visiting for a couple weeks and is a skilled nurse, and we’re grateful for her oversight.  No visitors, but encouraging comments & daytime texts are welcome! 

Thank you for all your encouragement so far; I really can’t express how much it lifts her up to read everything you’ve written to her here and in cards & texts.  

She’ll be replying to them again soon. :)

 

Journal entry by Wendy Slattery


WOW!!

When I last wrote to you, it was the first day of my ‘stem-cell harvesting’.  They said I would need the usual 4-8 days of harvesting to get up to the 2,000,000 stem cells needed for transplant. 

That night, a late phone call from an amazed worker (after triple-checking the first day’s tally) told me that, in a single sitting, I gave them 17,000,000.

“This is amazing!” they said. “It is rare to get seventeen million stem cells in anyone, let alone a person over forty! And in only one scheduled harvest session!”  They had planned for more. Thank you, Lord for the bounty, and in a such a short period of collection.  

We got the green light to move ahead to transplant.  I think we will make Door County!

I tried to imagine myself from Elly’s perspective (our fierce 6-year-old): how would she want the rest of the story to go?  “Yes, Nana, take the hill!  Go!  We knew this would go well! Move out!”  So with sword in hand, and a fresh buzz cut, “the warrior princess picks up her sword, mounts her horse, and rides to the hospital for her transplant!”

Or something like that.  

June 19, 2018:

I was admitted.  Now hours later, as I lie in my hospital bed, things don’t seem so grand. The melphalan (i.e. the nasty) infused quickly and began its cellular destruction, but I have felt transcended downward.  At least I’m not throwing up, I thought to myself.

When Terry and Jennica came to visit that night, Jennica in her characteristic pleasant demeanor asked if I’d had a chance to look out from large windows at the end of the hallway overlooking the city and the Mississippi.  I replied that it had been a cloudy, rainy day, with too much traffic, and the river looked dirty, dirty, dirty.

“Hmmmm,” she said to her father, “does someone sound a little crabby?”

“I am not crabby,” I said matter-of-factly, “I am simply reporting what I saw.”  

OK — yes, it was not a good day. But recalling the poison ivy in my backyard, wilted from my Roundup, awarded me some hope.

Midnight

Is that ice in my blood?  Or… Heat?  Coursing through me?  I can’t tell...  Maybe what I feel is a metal-like something or other…?  Ahhhh I’ve got it… GLITTER!!  Yes!  That’s what it feels like: glitter!  It feels like there is glitter racing through my blood, tingling and reaching every square inch of my body.  I wonder if I’m glowing...  The kids would like this.  But I’m not sure I do.  Again, I am NOT throwing up and that’s good.

If Clarence was here, I would ask him if we could shrink Bilbo Baggins to 7 nanometers in size and send him off to my bone marrow to report what he sees. But it’s a dangerous adventure and he is a squeamish little character, so I doubt he would approve.

Without Bilbo to report on his quest, I must give my own account of what might be seen in my blood, based only on my imagination (which these days holds no limits).

If I were to raft down the bloodstream and stop off at the shores of each bone marrow cave, I bet I would see a sky of neon green, highlighting all of the many sparkly particles and shiny glittery objects floating in the air and in the blood and all over.  

It looks like a nuclear bomb went off.  Unwound pieces of DNA are floating and flying through the air getting caught up in the crypts.  Little isolated hemoglobins are tumbling through the blood like little barrels, lost from their red blood cells.  There are dying little white blood cells by the side of the river that probably won’t make it through the night.  

Looks like mass destruction to me.  Time to clean it up.  Which begins the process of a miraculous period called healing.  This is where my imagination can go no further.

June 20th, 2018

Today is my new birthday.  The river did not look quite so dirty today.  At 2:30 this afternoon 8,438,000 stem cells will be reinfused.  

We got my grandchildren on FaceTime at 2:28 and made a very big deal out of this occasion.  They sang me “Happy Birthday”.  The nurse FaceTimed, too, explaining the red bag as she hooked it up.  There was a loud count down by 10 that could be heard all the way down the hall.  It became a party!

10….9…8…7…6…………………..BLAST OFF!!!!  The gun shot was fired.  Lydia opened the valve and the beautiful stem cells traveled the tubing in single file (perhaps not exactly) and they reached me through my line. 

The bag was rinsed about a dozen times to make sure not one stem cell was left behind. The kids continued to cheer.  “Go guys, to the bone marrow where you belong.”  It was a grand event.  A dear friend sent me the tweaked lyrics to “Annie” that you read above, and it became my new favorite song.

Tomorrow I go home.

June 21

They say that I will have a couple of weeks to be super careful. And then 100 days of careful watching.  Advanced isolation. No Knives. No flowers, no kids, no lifting. I am the Kid in the Bubble. 

But in due time someone, perhaps an angel, will walk to the edge of the cliff and gently pull me back to safety and I can have a new life.  

Thanks again for all of your kind support.  You have encouraged me greatly.

There, but for the grace of God, go I.

God Bless,
Wendy

 

 

 

 

Journal entry by Wendy Slattery

[from Wendy]

The Cytoxan was more than a hiccup. I still struggle with trying to be a good patient. Every day, in my morning trips to the U, I race the doctor to the “chair”, but having the upper advantage, he/she politely plops me in the patient chair, pretending not to notice my impertinence. (I bet they draw straws to see who has to see me each morning.)  I remind me of my cat, Tigger, who no matter how many times one takes him off the kitchen counter, relentlessly jumps back up. So it is with me.

A few weeks ago I was showing off my perennial garden to a dear friend, when she pointed out to me a single poison ivy plant. I have NEVER had this in my garden, I exclaimed!! She instructed me to go get the “Roundup” and spray it. And do not touch or try to pull it out. I did what I was told. And with deep-seated homicidal viciousness, I inverted a pot over it as if I could smother it with a vengeance also.  I saw a striking similarity between me and my cancer. Nip this in the bud now!!

And so, Cytoxan has proven to be my “Roundup”.

Yes, it kicked my butt. Yes, it made me cry. It threw my back out, from massive retching, and left me with right sciatica nerve impingement (that is slowly improving day by day.)  It was like I was in a boxing arena, only to be clobbered in the first round. It did not appear to me that I was the winner. But then again, as I looked at my wilting poison ivy a few days later, I wondered, maybe I was.

Today I lay hooked up to what looks like a Whirlpool washing machine, and they began harvesting my stem cells. They say I have a lot! But, they did not need to tell me that, since I felt each and every one of them explode from my bone marrow two days ago. It was a burning searing pain. Like having a baby, I suppose (although, how would I know, since I had a C-section).  Maybe it was more like a furnace explosion.

Like a farmer who knows when it’s time to bring in the wheat, so it is here. Let’s go, gas up the combine, the weather is perfect. After collection, they are gathered up like eggs in a basket, and then taken to a Saint Paul laboratory where they are individually and tenderly counted. Oh yes, dear loved ones, you will be back, and I will be waiting for you.

2,000,000 cells will be needed. A plan for two stem cell transplants.

These last few weeks I have had a level of physical pain that I have never experienced before in my life. It is a great gift, when a doctor can manage this well. Cancer hurts.

As the days slip by one by one, seemingly empty, and in isolation, with nothing to do but rest and wait and think and imagine, I have secretly wished that all of my care could be done at my hospital – Mercy Hospital, where I know everyone and trust them with my life. I miss them. I even miss the hallways and the elevators and the lunches.  It is my work home.  But it is not to be, for this.

There are days that I lose it, yes. But not more than the days enjoyed. I don’t like isolation, nor pain. But I see a glimmer of sunshine through the cloudy skies. I know the weather is changing.

And my grandchildren (sadly I’m isolated from them) continue to ask, “Nana, do you still have your hair?”

“Yes, my dears, I do.” Even after 12 days of getting my butt kicked.

Thanks again to all of you who have checked on me, texted, prayed, sent food, and been there.  You will never know how vital you were to my good health.  And to Jennica and Terry, who have truly walked these miles with me, no words can describe my love and gratefulness

God Bless,
Wendy

 

Journal entry by Wendy Slattery

 [from Wendy]

Day Zero is fast approaching in which I will be under “house arrest”.  Chemo Round 1 is now done. The bone marrow biopsy was good; the cancer went from ~ 85% down to ~ 5%.  But this was not satisfactory for my Oncologist, therefore he will hospitalize me tomorrow for IV Cytoxan. I will call this a hiccup on my journey.  Annoying, but what the heck, the hair was going to come out anyway. 

Terry and Jennica have signed a contract with the U of M to watch over me 24/7 once the transplant happens so I do not escape.  For goodness knows my garden will be calling me outside to dig in the dirt. And you know how that goes.... one thing leads to another...  (They might inquire about an ankle bracelet.)

In these next days, these killer drugs will wipe out all memory of prior illnesses. The times my mother quarantined her five children in the small bedroom for measles, mumps, chickenpox and the like will all be erased from the hard drive of my immune system. There will be no recollection anymore of the time I stood in line for the sugar cube that soaked up the polio vaccine. No more protection from prior influenzas or the influenza vaccines. I am starting over with a clean slate, like a new baby born into this world.

But there will be casualties. Good white blood cells, innocent platelets, and unsuspecting red blood cells will all be wiped out, too. There will be loss of the good along with the bad.

So…. will my blood still be red?  That is a question for my grandchildren. They know I will lose my hair. Elly said “That will look not look good, Nana.”  I suggested that Clarence shave his head in solidarity, but he thought that was a bad idea. (But then later he did so.)   Addy came to my defense (who has a port wine stain on her face) and said basically, “This is no big deal. She is still Nana from the inside.”

Then my previously harvested stem cells, programmed to re-create these important cell lines, will simply be transfused back into me with an injection, with no fanfare (that seems so anti-climactic!!).

Deep in their DNA, a homing device, like a pigeon with a note to deliver, will find the bone marrow. They are destined to travel the highway of the blood stream with each heartbeat until they stumble into their familiar place. Thank goodness for microscopic GPS!  I am counting on them to be good at what they do and not lose their way. There is no room for error here. What if they all ended up in my thumb? Or my ear? Hence, I will dangle over the edge of the cliff until they get home.

So I and my grandchildren will give them a grand fanfare befitting their importance, as if it were the start of the Olympics. The opening injection (oops, I mean gunshot) will be heard, the crowd will get excited as we cheer on the speed of each micro contestant. “Go guys! You can do it!  Do not pass go! Do not collect $200! You have a mission and we are watching with great anticipation!”  This will be amazing!

My dear friend in South America advised me to “live on the edge of the unseen world.”  I do. And with the inspiration of the imagination of my grandchildren, and my faith, I get a glimpse of the Miraculous. This will all go well.

They say that “it” (cancer) will come back according to the textbooks. But, I ask you, do these cancer cells really read the textbooks? Come on, that is too far-fetched.

I have 5 to 30 years left to live. I am no different than anyone else. The point is… I know that someday it will all be over, and I had never thought of that before. That is the main thing that is different for me now.

So I persevere with newfound empathy and purpose. I am inspired by those around me. Friends and family have lifted me out of dark days. Grandchildren have opened my imagination and have reminded me to look at the funny side of life with stories created out of the simple and the mundane things of every day. They have contagious laughter, and humor is good for the soul and healing. This is life. May I be better at it. And may my family, friends, and patients be the beneficiaries.

 

God bless,

Wendy

 

 

Journal entry by Wendy Slattery

My mother will be receiving some nasty chemotherapy soon, probably in early June, with her bone marrow transplant.  Unlike the cocktail she’s been receiving for the last couple months, this will be what we typically think of when we think “chemo”.  One of its side effects, of course, will be hair loss.  

She’s seen this coming for a while, and has picked up various head coverings, including scarves, a soft Irish hat, sunscreen (summer’s coming!), and a proper wig.  We had a scarf-tying session on Sunday with my Kenyan friend Caren, who expertly and glamorously wraps up her own closely-cropped hair with bright scarves.  (Every time I’ve fawned over her gorgeous arrangements, Caren has insisted that I should wear scarves like her, too; every time, I remind her that since we’re not Kenyan, we can’t carry it off without people thinking we’re a cancer patient.  Well, if the scarf fits, tie it – so here we are.)

As for her hair, Mom decided that she wouldn’t wait for clumps of it to fall out; rather, she would proactively set 2 hair appointments to prepare.  The first appointment would be for a ‘transition’ haircut now to help her adjust to having significantly less hair; that way, she can practice her wig and scarves without bulky hair getting in the way.  

The second appointment will be a buzz cut in June.

To prepare for this first haircut, we chatted about short bobs and pixies, perused Pinterest, and decided that the longish pixies (with a sweep of hair all along the crown) would be the way to go.  

The stylist looked at the pictures, listened to our input and gave Mom a medium pixie with a sweep of hair on the crown as we advised, cutting it slightly shorter than the pics (probably out of habit, allowing the look to last longer between appointments).  

It looks fabulous!  It accents Mom’s cheekbones and eyes.  It’s flattering, light, and stylish.

At least we all think so.  

Mom doesn’t like it. 

It’s. too. short.  

Given that her hair had already been short enough to just brush her shoulders, I began to wonder what kind of ‘transition’ she’d been hoping for.  Apparently, none.

And I realized that, no matter how attractive, any cut is essentially an accommodating gesture.  We may be preempting the imminent changes with a fabulous transition ‘do, but we’re also preemptively stepping a few inches closer to baldness. And is there any cut that can transition her to the next phase, and I mean really transition her, not just give her another one of her favorite medium bobs, that would feel good?

Over drinks at Panera after the appointment, she said that she just wants it all (the upcoming chemo and Bone Marrow Transplant) to be done & over with.  That it’s nice to have this two-week break from treatments before the nasty stuff starts, and that she’s enjoying these two weeks of freedom tremendously, but that she knows what’s coming, and wants to get it over with as soon as possible.

It reminded me of the Battle of Helm’s Deep (any other Lord of the Rings fans out there?), when the good guys know that an enemy is marching toward them: they secure their defenses and stand ready for battle, adrenaline high.  They spot the enemy approaching from the distance.  But it takes so long for the foot army to march across the plain that they must stand, watching, seeing, listening, knowing, for many long hours through the evening and into the night before the battle can finally begin.

I always thought that if I’d been up on those battlements, I’d have been so thoroughly wiped out from the waiting alone that I’d be useless once engaged.  Patience is exhausting.

And yet, as she points out with her characteristic grit, the reprieve between Phase 1 and Phase 2 is also a blessing.  Two weeks without steroids, without appointments.  A chance for her body to stabilize a bit, as the drugs work their way out of her system with their varied lingering half-lives.  A few steady nights’ sleep.  Time and energy to beautify her home garden before her quarantine begins in June.  

Unexpectedly, she feels a good amount of genuine energy in this period, and not just from lingering steroids; the cancer cells had so filled her bone marrow that there hadn’t been enough room for her body to produce its normal range of healthy blood cells; the 12 weeks of chemo that just ended actually wiped out enough cancer cells to allow some healthy balance to return.

At least for now.  (Cue the drumbeat march of orcs in the distance.)  In a few weeks, everything, whether bad or good, will be obliterated and the bone-marrow slate wiped clean for the transplant.  Not even a cellular memory of childhood immunities will be left.  And of all people, she is fully, deeply aware of the risks at that point, having treated many such compromised patients herself.  A battle ahead, indeed.

But she also expects the whole thing to go well.  And that’s not blind optimism; she’s had the usual arrows slung up at her (not exactly from orcs, but from, among other things, a dangerous drug reaction, crippling sleep deprivation, accelerating heart murmurs, and darkest despair), and each has been decisively extinguished.  So if precedent is any indication, she has reason to expect such goodness to continue.  

And that expectation drives her transition into the transplant phase of her journey.  Yes, it’s coming.  Yes, it’s dangerous.  Yes, it’ll stink.  Yes, more arrows will be slung up at her.  And yes, they’ll be extinguished too, just like all the others, because that’s just how the story ends for every single arrow in this epic.

I’ve heard that expectation is the combustible fuel of faith.  So friends of faith, allow me to continue providing you with a very specific list of things to not only pray for, but to authoritatively expect: 

For her peace of mind to continue through these quiet moments on the parapet as the battle slowly approaches. 
For protection from germs (with praise that her most vulnerable season happens to be the ‘germ-lite’ days of June & July).  
For a smooth set of tests, starting next week, which will green-light the transplant itself to get the whole thing underway as soon as possible.  Given her bloodwork so far, it’s a perfectly rational thing to expect.  
For her cells to do exactly what they’re expected to do once the transplant happens.  
And for her garden to bloom well, for it will be one of the few places she can explore once quarantine begins next month, and she’s worked hard in these days off to make it beautiful.

All, thank you.  You have gone out of your way to take care of her, to send her cards, to bring her good food, to encourage her.  Every single word you send makes a difference in her outlook on life.

We’ll be in touch.

 

Journal entry by Wendy Slattery

(From Jennica)

If you were surprised to hear of my mother’s diagnosis of Multiple Myeloma, you’re not alone.  In her words, the surprise was “like the velociraptor from Jurassic Park, jumping at my face, coming out of nowhere”.


Yes, she felt totally healthy.  Nope, no symptoms.  In hindsight, she now remembers a couple of small wounds that took a rather long time to heal (indicating a distracted or weakened immune system) and a bit of fatigue over the last couple of years, but otherwise, nothing.  (Raise your hand if you just self-diagnosed, too!)


It was through the routine bloodwork of a routine physical that something was noticed.  A few odd factors raised concern, so her physician sent the bloodwork off for further testing. 


My mother, doctor that she is, signed into her own chart to read the final results late one Friday evening at home in January.  She saw the spike in one particular factor of her blood, and correctly deduced that she had a blood cancer.  We would have loved to tell her, “ehh, you’re probably wrong”, but we all knew she’s too good a doctor to have read the data incorrectly.


So began a bewildering set of questions and appointments, through which my mother asked herself some deep questions and discovered some deep truths of life… like what a humorously terrible patient she can be.  (To the poor P.A. who measured her blood pressure at that first Oncology appointment: “What? That can’t be right!  My blood pressure is never that high! Did you do it right?  Should you do it again?”)


Multiple Myeloma causes cancerous plasma cells to multiply like crazy in the blood-making machine that is bone marrow; those cells eventually burst out of the bone marrow (shooting tiny ‘holes’ in the bone) and wreak havoc in the body, eventually landing on organs and causing lots of damage.  (Did I explain it right, Mom?)


A key marker of your cancer’s ‘progress’ (bad progress) is the percentage of plasma in your bone marrow: anything 10% or less is normal; anything 11-59% is “Smoldering” Myeloma (indicating that it’s there in the bone marrow but not actively causing damage yet), and anything 60% and up is “Active Myeloma”.


My mom’s percentage was about 85% -- strongly “Active” myeloma.  But by the grace of God, it hadn’t yet ‘burst out’ of her bone marrow.  From various tests, we determined that there are no tiny holes punched through her bones, and no cancer clumps (officially called ‘lesions’) anywhere on her body, and no organ damage anywhere.  This is excellent.


It is terminal.  There is no cure.  The treatments have come a long way in recent years, but they technically can’t get kill every last cancer cell; on top of that, the treatments carry their own grave risks, of which my mother is all too familiar (having treated many Myeloma patients herself). 


But now, as her Oncologist was quick to point out, it’s normal to see patients achieve “ten years or more” from today’s wonderfully progressed treatments.


To which my life-loving mother replied in no uncertain terms, “Ten years isn’t enough.”  She was turning 65 years young.  She’s barely two decades into being a doctor.  She has three adorable grandchildren ages 6, 8, and 10 who need her.  No, ten years isn’t enough. 


So she’s decided to try this whole ‘being a good patient’ thing, and we are all boldly praying that by God’s grace and provision she will land solidly on the “or more” side of “ten years or more”.  The Oncologist has laid out a plan of attack, and my mom is following along.  Treatment has already begun; she’s on a chemo regimen in preparation for a bone marrow transplant this summer. 


I’ll explain the treatments in a later update, and my mother will, I’m sure, love the fact that I’ll continue using hyper-simple layman’s terms instead of the probably more accurate medical terminology.  (Hey, one man’s ‘lesion’ is another man’s ‘cancer clump’.  Whatever. She can edit this later.)   But this should, I hope, fill you in on the background to the news that my mother has Multiple Myeloma.


Friends of faith, pray hard.  Our God is big.  He hears your prayers.  She feels your prayers.  She needs them.  She’s already felt some darkest despair at some times, and otherworldly peace at other times; continue lifting her up. 


We’ll be in touch.

Wendy’s Story

Site created on March 24, 2018

Welcome, friends!  Jennica (Wendy’s daughter) is setting up this CaringBridge site because, naturally, Wendy is off maple-tree-tapping with her grandson Clarence (as anyone would do between chemo shots, right?) on this cold March day.  Someone’s gotta do the computer work here.

As many of you know, Wendy was diagnosed with the blood cancer Multiple Myeloma in late January.  (No symptoms, just discovered through routine bloodwork and a conscientious primary-care doctor.)  She is undergoing chemotherapy in preparation for a stem-cell transplant sometime this summer.

I’m setting up this site so she has an easy way to connect with her wide circle of loving friends and family.  She has deeply appreciated the recent outpouring of encouragement and support from you all, and would like to keep you apprised of events as she moves forward.

Thank you so much for every card, flower, treat, and kind word that you’ve sent her way.  You should know that she keeps each word of encouragement, and re-reads each card.  (The grandkids help her eat every treat.)  Your words have lifted her spirits from some dark moments, and she keeps them close at hand. 

If you haven’t used CaringBridge before, I highly recommend ‘subscribing’ to journal updates so you get an email each time she posts (or, more likely, I post for her while she’s out adventuring between treatments). 

Thank you.

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