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June
25
2020

Onward and Upward

 

At the University of Minnesota Bone Marrow Cancer Clinic there is a wide and open gently rising staircase that ascends to the second floor as it follows the pleasant curve of the floor-to-ceiling windows of the lobby.  I always thought it was so impressive.  Especially 2 years ago when I saw it for the first time. 

Has it really been two years!  Two and a half to be exact.

Here I am again facing those stairs once more and remembering those despair-filled days post-transplant when I could not climb them. I never was so incapacitated. The stairs, as charming as they were, were compromised by the stark, whitish-gray aseptic and sterile look of the rest of the clinic.  But they were a good clinic.  I just did not want to be there.

Last Saturday, June 20th,  marked the two year anniversary of my stem cell transplant for which I received back my harvested stem cells the day after they clobbered me with the nasty nuclear-like chemo bomb called melphalan that burned out the inside of my bones.

Alas, it is time for the 2-year checkup, as if I were a small child about to get a well-baby check.  (Although it is more invasive than that and not quite so charming.)

Life gradually returned to normal after the transplant.  I went back to work.  Walking every day. Biking with my grandkids.  I do my best to forget and pretend that it never happened.  Ignore, deny, avoid, avert; whatever it takes to not revisit a traumatic time. If it wasn’t for the chemo pill I take every day, I would hardly know or believe my own story. 

Influenza B got ahold of me at the end of December, and after 6 weeks of a slow recovery, I had to admit that my immune system was not prepared for the world around me, especially the one I demanded it to be in.   I went on a leave of absence that, unfortunately, was extended due to Covid-19.  I have been working Infection Control and doing Covid work from home, but it is not the same as seeing patients in the hospital. 

Forced to acknowledge the risks I was running, I decided it was time to retire.  Terry said, “Wendy, your plane is cleared for landing.”  My family and friends applauded.  And I cried in my closet. “Yes, Wendy,” I said to myself, “you are on final approach with your beloved work as an Infectious Disease doctor.”   Retirement is set for November 15th.

Back at the clinic now, I would be kidding if I told you that there was not some anxiety about coming here. But I approach the stairs and I am reminded that they have contributed beauty to this place which gives some degree of comfort.  It is just that bad news echoes off these walls (is this the day, or the month, or the year, that things turn for the worse and the other shoe falls?).  The stairs are behind me now as I walk to the sign-in station.

A few weeks ago, I decided to go through our basement collection of books in the house and get rid of some.  I figured that I could throw away any of my medical books that were older than 5 years, since knowledge has expanded exponentially, plus the internet is just a keystroke away for the latest.

I saw my “Hematology” book that I bought 25 years ago in medical school, and without too much thinking I tossed it into the garbage.  But wait…. I stopped, looked back, and yanked it out.  What did it have to say about Multiple Myeloma? There were 2 pages.  The key points I found of interest were that life expectancy was only 2 years.  Wow, that is right now!!  Treatment was blah, blah, blah, and melphalan every 3-4 weeks.  WHAT! Unbelievable, I said to myself!  Who could survive melphalan that often!  No wonder they died.   Back in the garbage it went.  I poured myself a glass of wine.

After the tests, one gets home to pensively wait for the results, like waiting for your teenager who has the family car and it’s past curfew.   Where are they?  Am I not getting them because they are bad?  Do I have to call for them?  When should I consider late late?  I don’t want to be annoying.  At this point a bad test result weighs heavily because it can change everything about the rest of my life starting now.

The follow up is via tele-video.  Oh, shoot, I miss the stairs.  But at least I don’t have to listen to the echoes.  We start with the Survivorship appointment provider.  She asks me if I have any questions about survivorship?  I say, “Nope, I just hope to survive.”

Then my provider comes in and says, “No cancer seen in the marrow, nor evidence in the blood.”  It is clean.  Continued complete remission.

Every year is a gift and not to be taken for granted.  They are steps in the inevitable climb up a staircase to a better place.  It has been a journey.  One of faith and facing the impossible and the incurable.  I see that God was always willing to heal me.  My challenge was believing that his healing was indeed intended for me. 

For this I am grateful.

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June
21
2019

One Year Later


[From Wendy]

Behind our house is a pond full of frogs and every night these frogs croak together in a chorus of crescendos and decrescendos as if led by a conductor standing erect at the water’s edge in a tuxedo waving his baton against the moonlit night.

A lovely lullaby to fall asleep by, for sure.

One night I awoke around midnight to hear only one frog croaking by himself. Hmmm, I wondered, he and I might be the only ones awake right now. Why might he be singing his own solo? And is it to anyone in particular?  Perhaps he just has a song in his heart, and he has to get it out.

Maybe we had something in common, the frog and I. Since I too seem to be singing a song to no one in particular. A song of quiet contentment that encapsulates the peace and satisfaction accumulated over the last year and a half; with lessons learned and despair mostly overcome.

It has been a year, as of June 20th, since my stem cell transplant when they gave me the deadly Melphalon that burned out my bone marrow like a forest fire in a National Park.  And thankfully my own stem cells, which knew where to lodge (in that cinder smoking marrow), restored me back to the life I knew before. 

Much ground has been covered since then. I live mostly now in hope.  I feel strong and I am back to work doing what I like to do best. I have attempted to put that awful cancer behind me as if it never happened in the first place.  I can laugh and my attitude is good. I am riding my bike with my grandkids and I climb the monkey bars with them. I give myself permission to believe in the impossible—that in spite of what they say, this Multiple Myeloma will be cured eventually in me.

But occasionally I lose that self-proclaimed confidence when I visit my Oncology Clinic and there is an echo that bounces off the clinic walls that says, “Beware, the other shoe is about to drop.”  Is it back?       

This past week I went in for my 1st anniversary checkup.  I had my bone marrow biopsy along with my blood work to see where things were at. I had been on pins and needles for a few months, knowing that much of my future would change if any cancer was seen now, even a little bit.

On Thursday, Terry and I went in to see my doctor and he told me that I remained in complete remission.  He congratulated me that the bone marrow biopsy was good, and I was doing very well. We were ecstatic.  My expiration date that was stamped on my forehead was longer than I thought.

At the same visit, I received all my baby vaccines for the new naïve immune system that I now had.   My grandkids were so excited that I could now truly understand the misery they have gone through in getting their own vaccines.

“Did it hurt, Nana?” they asked with excitement.

“Yes!” I exclaimed, “Papa had to hold me down while I screamed.”

And so it is, I croak out my song out in the night, to no one in particular, except the God who has watched so closely over me,  and during the day, I know that things are going to be OK.

 

Wendy

 

January
13
2019

Happy New Year, as of January 12th!


[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

November
7
2018

The Vaccine

 
 
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
 

September
8
2018

Day 80


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

July
23
2018

Results [from Jennica]


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.

July
13
2018

Day 23


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
 

June
30
2018

More Hiccups

[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. :)