Snow

The view from our Salt Lake City apartment

It's hard to believe the first day of winter is still three weeks away.  Roger does not feel ill, but his energy is low.  His blood counts are on the decline and the new stem cells haven't kicked in yet.  They will probably start giving him transfusions soon to perk him up a bit until he can start producing his own blood cells.

It may be late fall, but it feels like winter in every sense of the word.  This is a time to stay huddled inside, listen to music and wait it out.

Snowbird  (click song title to play)

Beneath it's snowy mantle cold and clean,
The unborn grass lies waiting for its coat to turn to green.
The snowbird sings the song he always sings,
And speaks to me of flowers that will bloom again in spring. 

Anne Murray

How to Have a Bone Marrow Transplant in Ten Easy Steps

While Roger goes through the regimen, Candi blogs

Here’s an explanation of the bone marrow transplant procedure for the uninitiated. Don’t try this at home.

1. Begin with a preparative regimen of chemo treatments to destroy the leukemia cells in your body and make room in your bone marrow for new, healthy stem cells. It will cause your hair to fall out, but that’s okay because you won’t be going out anyway.  
2. You may rest a day or two before the day of transplant. ‘Rest’ is actually a misnomer since, apparently, every person employed by the hospital and perhaps by the state of Utah, is required to come into your room several times a day at a minimum.
3. Your own bone marrow will have ceased production and your own blood cells will degenerate by this point, causing you to feel rather lackluster.  This step involves a significant amount of waiting.  Entertainment is provided by the parade of hospital staff marching through your room at every hour of the night and day.
4. On the day of transplant, healthy blood stem cells will be infused into your body much like a blood transfusion. Surprisingly, the transplant itself will occur as if it is no big deal.
5. Once in your body, the stem cells will migrate into your bones where, over the next few weeks, they will set up colonies and begin producing new blood cells. This sounds as if you don’t have to do a thing but sit there and wait for it to happen.  In fact, you will be so busy with sitting up, showering, dressing, eating, and entertaining a seemingly endless parade of hospital staff that you’ll feel exhausted.
6. During the first weeks following your transplant, your medical team will monitor you closely for complications such as infections, excessive bleeding, and graft-versus-host-disease.  Nasty buggers, all.  But most are temporary and can usually be controlled.
7. You’ll be given blood transfusions to supplement your declining blood counts as necessary.  You'll be given drugs to control complications of the transplant, drugs to counteract the side effects of the transfusions and drugs to counteract the side effects of the drugs. 
8. This step includes more waiting in the hospital.  You may amuse yourself by avoiding germs and trying to eat enough to satisfy your nurses. 
9. You’ll find that your bone marrow and blood type is now identical to your donor’s.  You will celebrate by having your childhood immunizations over again.
10. When you are released from the hospital you will make daily trips to the outpatient Bone Marrow Clinic. Over time, these will become weekly, then monthly visits.  Gradually, resume life.

Playing House in the Hospital

Day 13 in the hospital

Day 4 post-transplant

Roger has developed an aversion to hospital food.  Not to the food, per se, but to the plastic dishes and trays on which it is served.  Well, I must admit, it doesn’t matter what you order, it often tastes like an old thermos bottle.  Roger’s sense of smell seems to be heightened so he is especially offended by the “aroma.”  It is critically important that he keep eating, so I brought him a ceramic mug and bowl that I wash in antibacterial dish detergent and carefully dry after each use.  And I’ve been bringing in groceries and preparing food in the little break room down the hall.

Fresh fruits and vegetables are not allowed in the transplant unit because of the potential for molds and other contaminants.  Likewise with meat, cheese, dairy products and almost any food in it’s natural state.  They do allow us to bring in frozen and canned foods and anything that is stable at room temperature.  I try to bring in a variety so that Roger has choices.  Since he’s eating a la carte, I count and report his calories myself.  If his calorie intake drops below a certain level, they will infuse him with nutrients.  That is a last resort and we don’t want to go there for all the reasons you can imagine and more.

Our menu runs counter to everything we know about good nutrition.  We are trying to get as many calories as we can.  If Roger can only eat small amounts, then it had better be densely packed with calories. Canned soups, peanut butter and jelly sandwiches, TV dinners and packaged cookies will get boring in a few days, and then we’ll move on to plan C, plan D, and plan E….  In the mean time, food doesn’t have to taste like an old thermos.  Although you can't get them for 89 cents anymore, Swanson’s still makes a mean Salisbury steak. Did you know a single Mallomar has 250 calories?

Ties That Bind

A friend is someone who knows all about you and loves you anyway.

Studies have shown that people that have a loving intimate relationship with a partner are better able to cope with stress.  I would elaborate on that by saying that times of extreme stress call for a team approach.  Roger and I rely on each other, but we also have family and friends, business associates, acquaintances, medical support staff both here and at home in Missoula, and an extended network of transplant survivors that seems to be growing every day.  Altogether a pretty wonderful support system.

Each person in our life brings a particular strength, talent and point of view.  Some of you provide important anchors that give us reason to go on day after day.  Some of you make us laugh, or provide entertainment or comfort.  Some of you drive on slippery roads on our behalf.  Some of you bring expertise and experience.  All of you remind us that we are part of a larger world that exists beyond the walls of this hospital room.

On this day in 1994 Roger and I met.  On this day in 2003 we were married.  Today, we celebrate both anniversaries and "Day 2" post-transplant.

Thanks to all of you for celebrating with us.  Thanks for being a part of our world.

Iron Man and Man of Steel

There were too many things happening all at once this week.  I couldn't post fast enough!  By completing 140.6 miles of running, swimming and biking in just over 11 and half hours, Casey became an Ironman.

Casey gestures to his fan club.

Our grandkids cheered their Dad on.

Connor and Kylee

By surviving his first 10 days in the hospital, chemo infusions and finally a bone marrow transplant, all while keeping a smile on his face, Roger demonstrated that he is a man of steel.

Roger and his nurse, Nataliya during the transplant.

Happy Thanksgiving

Usually at this time every year, I'm in the kitchen and so I don't get to see the parade.  I'm tired; it can only be emotional since I didn't do anything yesterday.  But it feels good to just sit in front of the TV today knowing we'll order room service later.

The first 100 days after a bone marrow transplant tell if the new cells have taken and are reproducing or whether they are being rejected.  It is a matter of managing symptoms and side effects, and making sure no infections get started while the patient's immune system is non-existent.  We want to see a "graft versus leukemia" effect.  We don't want to see the "host versus graft" disease.

Roger's feeling quite well today.  He had bacon, eggs and coffee for breakfast and has been out of his room for two walks already this morning.  He's more energetic than I am.

Roger Gets the Good Stuff

You can't always get what you want
You can't always get what you want
You can't always get what you want
But if you try sometimes you might find
You get what you need

-- Rolling Stones

After months of preparation the transplant itself seems a little anticlimactic.  An infusion of Robert’s stem cells is underway.  Divided in two portions, it will take about two hours altogether.  The infusion is not too difficult for Roger, but he'll pay his dues over the next couple of weeks.

 

Robert and Roger together a couple of days before the transplant

We don’t know how to even begin to thank Robert for this generous act.  Medical science made this miracle possible and Robert has made it happen.  He’s our hero.

This is a little gross, so click away from the page if you’re squeamish.  After all that effort to collect the good stuff, I felt a need to capture a visual for posterity.

 The anticlimactic drip of a stem cell infusion

Roger gets the good stuff

Salt Lake City Blizzard

The Utah State Capitol Building, just a few blocks from the hospital.

The first blizzard to hit Salt Lake City in 20 years roared in last night.  It dropped about 5 inches of snow.  More remarkable was the howling wind and frigid temperatures.  Many of our blog followers have already experienced the same storm, so you know what I’m talking about.  Canceled flights, closed freeways, power outages, emergency travel only.  I was glad to be here with Roger last night and not have to worry about driving the steep hill up to the hospital.

It was a wild night even here.  The rooms in the bone marrow transplant unit are on a negative pressure system, which circulates air out of the patient’s room and does not allow recycled air in.  Apparently, due to arctic temperatures last night, a pressure device on the roof malfunctioned.  An alarm sounded in Roger’s room off and on for several hours.  Finally they determined the system was allowing contaminated hospital air with who knows what kind of germs to come in and they made us move to another room in the middle of the night.  It was not the best night’s sleep we’ve ever had.

Our thanks to Dave, for making sure Robert got to the hospital this morning despite the snowy roads!  One more day of collecting Robert’s stem cells should do the trick.

That’s the Way the World Goes Round

That's the way that the world goes 'round.
You're up one day and the next you're down.
It's half an inch of water and you think you're gonna drown.
That's the way that the world goes 'round.

John Prine

This is a rest day for Roger.  That means no chemo and no treatment, just a day to recuperate and prepare for the big day tomorrow.  He’s feeling a little better and is managing to eat and exercise in spite of having a hangover from yesterday’s drugs.

Here’s something sweet enough to put a smile on our faces today.

 Our son Chris, at home in Santa Fe

The blizzard that stopped traffic and knocked out power from Vancouver and Seattle, through Eastern Washington, Idaho and then Montana is about to hit us here in Salt Lake City.  I don’t know how bad the storm will be, but I brought an overnight bag just in case.  Local newscasters are making dire predictions and hospital staff are chattering nervously about how far they have to drive when their shift is over.  If the power goes out at the apartment, I’ll be better off here at the hospital tonight.  I’m not willing to risk not being able to get here tomorrow.  

Robert – drive safely and make sure YOU get here tomorrow!

The Monday Blues

Roger's not dancing much today.  Chemo drugs toxic enough to kill his own bone marrow have sapped his appetite and his energy. It makes us anxious to know things will get worse before they get better. But there is some comfort in seeing the hospital staff behave in the same way day in and day out.  They go about their jobs as if life were still normal; they are not alarmed.

How can we maintain a positive outlook and still be realistic about the effects of this stress on our lives? 

My attention span is short and my short-term memory is shot.  I feel lost and confused where a year ago I would have felt energized and challenged.  I keep reliving those moments on the phone with Roger when he told me the leukemia had come back as if it were the moment of impact in a bad accident.  I don't know if I'm hungry or tired or anxious or behaving strangely.  I seem to be disconnected from my own body. 

I expect that life after the transplant will never be the same.  I have to be realistic about that.  We will never again be carelessly optimistic.  We will never again see ourselves as bullet-proof.  But I have to believe it will be a good life, after all.  That's why we're here.

Saturday Night Fever

Don't be alarmed by the gown, gloves and mask.  Patients are required to wear them whenever they leave their own room.  Roger wants you to know he's smiling under the mask.  This is what he looks like when he goes for his walks in the corridors.

Remember this one?  Click on the song title to see the original music video.  Roger could have passed for one of the Gibb brothers in 1977.  He doesn't have the hair for it now. 

Staying Alive
(Bee Gees)

Well, you can tell by the way I use my walk,
I'm a woman's man, no time to talk.
Music loud and women warm.
I've been kicked around since I was born.
And now it's all right, it's O.K.
And you may look the other way.
We can try to understand
The New York Times' effect on man.
Whether you're a brother
Or whether you're a mother,
You're stayin' alive, stayin' alive.
Feel the city breakin'
And ev'rybody shakin'
And we're stayin' alive, stayin' alive.
Ah, ha, ha, ha,
Stayin' alive.

Stayin' alive.
Ah, ha, ha, ha,
Stayin' alive.
Well now, I get low and I get high
And if I can't get either I really try.
Got the wings of heaven on my shoes
I'm a dancin' man and I just can't lose.
You know it's all right, it's O.K.
I'll live to see another day.
We can try to understand
The New York Times' effect on man.
Whether you're a brother
Or whether you're a mother,
You're stayin' alive, stayin' alive.
Feel the city breakin'
And ev'rybody shakin'
And we're stayin' alive, stayin' alive.
Ah, ha, ha, ha,
Stayin' alive.
Stayin' alive.
Ah, ha, ha, ha

Friday Update

Roger is feeling better than we had any reason to expect after his first four days on chemo.  He's experiencing a little background nausea and his energy is slowly dwindling, but overall, not bad at all.  He's still eating well, still working out with weights, still walking and stretching many times a day.  Everyone, doctors and nurses included, are impressed at Roger's determination to stay as healthy as he can for as long as he can.  They tell him to think of this as a marathon, not a sprint.  Going into the transplant strong is a winning strategy.

Robert will be here tomorrow.  Of course, it will be a great relief to have our donor on-site, but Roger is especially looking forward to having a good long visit with his brother.  We'll be lucky if those two don't have everyone in the ward losing their shirts in a poker game.

Our son Casey will be en route to Tempe, Arizona for the Ford Iron Man on Sunday.  I can't imagine spending -- what? -- 12 or so hours running, swimming and biking?!?  Casey says Roger is his inspiration for never quitting.   If the event is televised, you can pick Casey out of the crowd.  He'll be the one with these "I ride for Roger Merrill" stickers on his bike, from Lance Armstrong's LiveStrong Foundation. 

I have such strong-willed, determined (and stubborn) men in my life.  I know who to bet on!

Mindless Comfort

There is a constant stream of people going in and out of Roger's room day and night, all of them poking and prodding, measuring things, checking dials, flipping switches and asking personal questions.  But we were able to get two nearly undisturbed hours last night to sit quietly together and watch television.  It was like home and felt like bliss.  We watched Project Runway.  We don't need to be challenged every minute of every day.  Mindless entertainment is a comfort. 

Roger has a DVD player in his room and we can rent anything from Netflix or from a nearby video store.  What do you recommend?

What Makes Life Less Lonely?

Keeping busy. Having work to do that makes a difference to someone.  Staying connected.  Yesterday I moved our belongings from the claustrophobic hotel room into an apartment.  It has 4 rooms and an actual kitchen. When Roger is released from the hospital, we’ll be able to breathe, cook, work and live here as long as we have to. I drove myself back and forth across Salt Lake City several times and only got lost once.  It’s a small achievement but it feels like a triumph.

Roger kept busy too.  He’s on chemo now and the hospital routine is remarkably busy.  When he does get a few minutes to himself, he dons his mask, gown, and gloves (required every time he leaves the room) and “runs laps” in the corridors.  He works out with five pound dumbbells and eats as much as he possibly can.  His job for this week is to stay strong in preparation for the transplant.  He takes it very seriously.

Being in a new place, I don’t have a TV, radio, or an internet connection yet.  I didn't have anything to do last night but put things in order, sanitize surfaces and meditate on loneliness. I wondered what would keep me from going crazy in this place by myself.  Answer:  the work I’m doing here makes a difference.  I have things I need to do, places I need to be and problems to solve.  How can I not be serious about my job when Roger is so serious about his?

It’s been a good day’s work all around.

Forewarned is Forearmed

Roger has developed antibodies to a couple of RH factors that are present in the blood of 98% of the population.  He could have a severe allergic reaction to red blood cells.  This makes getting transfusions problematic.  He’s never had problems with transfusions, but apparently the pros in Missoula have been scrambling behind the scenes to make sure he's had the good stuff all along.  And we didn't even know it.

This means a blood supply that works for Roger will be rare and hard to find.  It will be difficult for the blood bank to keep a large supply on hand.  Keep your fingers crossed he doesn’t need much.

This sounds dire, I know.  It is another risk we don’t need.   But the docs here are good at contingency planning.  They are working out  'Plan B' and 'Plan C' strategies for emergencies, including giving Roger “bad blood followed by good blood” and/or giving him steroids and other drugs with transfusions to control his body’s response.

The good news is that once Robert's stem cells are reproducing in Roger's body, these antibodies should be wiped out.  Our best plan now is to go forward, armed and ready.

Getting Admitted

We are here:

LDS Hospital

Room # East 812

325 8^th Avenue

Salt Lake City, UT

Roger is doing great, somewhat anxious, but that’s understandable.  Over the course of the next two to three weeks they’ll make him feel lousy.  He’ll start chemo very early tomorrow morning.  He’ll probably continue to feel good for a few days until it begins to catch up with him.

The Bone Marrow Transplant unit won’t allow flowers or plants.  Roger says “send liquor.”  Ha, I doubt that would be allowed either; these nurses are that tough.

Cards and emails would be wonderful though.  He can be snail-mailed at the address above or emailed at: roger@rmerrillcreative.com

Roger Packs His Bags

If Roger ever tells you he travels lightly, don’t believe him.  You’ve seen this photo, which serves as evidence to the contrary.  This does look like a lot of stuff, I’ll admit.  But a six-week hospital stay is a long haul.  Even though we’ve met with the transplant team a couple of times, we’ve discussed Roger’s daily routine, and we’ve even seen the room he’ll be in, it’s difficult to anticipate what he’ll need.

Until two days ago we were not 100% sure this transplant would happen.  There have been many, many variables that could kibosh the whole deal.  It’s been a nerve-wracking three months of waiting and hoping the pieces would fall into place.  And, as Roger said earlier today, “Now that this is actually happening it’s hard to get excited about it.”  Certainly true.  This will be an adventure, but probably not a lot of fun.

The schedule

• November 15:  Roger is admitted to LDS hospital
• November 16 – November 23:  Preparation Phase (intense chemo to kill Roger’s bone marrow)
• November 23 and 24: Robert’s stem cells will be collected
• November 24 or 25:  Happy Thanksgiving!  The transplant occurs - Roger gets an infusion of Robert’s stem cells.  You can bet we’ll be giving thanks!
• November 26 – December 16:  “Early recovery phase”   About 2-3 weeks post-transplant, the new bone marrow cells should be starting to reproduce.  Roger will be at extreme risk for infections and for Acute Graft Versus Host disease during this time.
• Approximately at Christmas, if all goes well, Roger should be discharged from the hospital.
• End of December – March, we stay in SLC, during which time, Roger will be monitored as an outpatient for infections, Chronic Host Versus Graft disease and any other complications.
• Approximately March, if all goes well, we’ll return to Missoula and Roger will return to Dr. Nichols care.

 If Roger needs more stuff at the hospital, I can always bring it later!  <wink>

Finding My Way

Salt Lake City is pretty when the sun shines.  But today it was gray and cold.

People keep telling me it's the easiest city in the world to find your way around because it's laid out on a grid.  I don't care what they say, I still find it confusing.  Roger drove me around town and gave directions to help me get oriented.  Starting Monday I will be driving myself.  Roger's directions didn't sink in.  I was confused and sullen.  And then I realized, I'm not getting this because I don't want to get it.  I don't want to be here.  I'm tired, I'm scared and I want to go home.  And the hard part hasn't even started yet.

But we are here.  Suck it up, girlfriend.  Find your way.

Moving Day

Today we’re getting settled into our little apartment cleaning all the surfaces like they’ve never been cleaned before, stocking up on a few groceries and getting oriented to the neighborhood.

We need to be sure our internet connections are functional, that we’ve got access to an office supply and other stores that we’ll need, that we have our family and friends telephone numbers handy, and that we know our way to and from the hospital.  For the next six weeks I’ll spend most of my waking hours at the hospital with Roger.  I’ll return to this little place at night (the operative word being little).

I just need a place to shower and sleep.  After Roger is discharged, we’ll need to stay on in Salt Lake City for three months.  I’m not sure this little space will be sufficient then.  I’ve got six weeks to make it livable or find another place.  In the mean time, I’ll focus on the positive things about this place to guard against getting depressed. 

I like the easy access to a Whole Foods store, a Barnes and Noble with its familiar and comfortable in-store Starbucks and this pretty walking path along Mill Creek just outside our door.

We’ll relax tonight.  Tomorrow’s schedule presents a full day of meetings with the transplant team.

Southwestern Montana

When we traveled this route between Missoula and Salt Lake City just ten days ago the landscape was stunning with yellow fall foliage and a brilliant blue sky.  Today, there are no leaves remaining on the trees.  The foothills that surround us are covered with snow.  Silhouettes of migrating birds appear as black check marks against a soft gray background.  We are relieved to find the roads dry.  In another few days, winter will settle into this landscape for a long stay and driving will be more difficult.  For now, we are safe, dry and warm.  We’ve got snow tires on the car and a few chapters of King Solomon’s Mines left on the iPod to keep us amused.  Roger is energetic and is doing most of the driving.

Support and Solidarity

Today was not an especially productive day in terms of packing and getting ready to leave town tomorrow, but it was a good day.  We were easily sidetracked.  Several friends and neighbors stopped in with well wishes. We love the support!

Dr. Bill Nichols at Montana Cancer Specialists in Missoula gave Roger a warm send-off.  He's been treating Roger for six years.

And finally, Carly, our charming and fabulous stylist at the Boomswagger salon shaved my head and then snapped this photo.

It's been a busy day.  We'll finish packing and hit the road tomorrow.

Family

Here's a snapshot of our daughter Taylor and her husband Rod.  They live in Chilliwack, BC.  I'm not sure what they were celebrating when this photo was taken.  Perhaps a victory for their co-ed hockey team?  Is it an optical illusion, or is Taylor's glass of wine twice the size of Rod's?

Why Worry?

There should be laughter after pain

There should be sunshine after rain

These things have always been the same

So why worry now?


Perhaps you've never heard this haunting lullaby. The bluesy-rock

Dire Straits album "Brothers in Arms" was an instant favorite when 

it was released in 1985.  It was a "go-to" album for fun and for 

comfort all through the 90's.  I must have listened to it a hundred 

times.  I listened to it, but never really heard this anthem for 

hard times - the fifth cut Why Worry until August of this year. 

Sitting on the deck at my daughter's house overlooking the scenic 

Fraser River Valley, I was numb at the thought of returning home 

to take up my place in Roger's leukemia nightmare.   I said over 

and over, "this is so unfair." The lyrics of this song helped put 

Roger's health challenges in perspective.  

Melody and lyrics, hard work and rest, grief and joy.  Life isn't 

one or the other; it's both.  It's a cycle.  Don't get complacent 

about your good life; it can be snatched away in an instant. 

Don't get too despondent about your troubles; good fortune can be 

just a heartbeat away.

If you've come this far with us and clicked into this blog, you 

already know our story.  Roger has Acute Myelogenous Leukemia

(AML) and is scheduled for a bone marrow transplant in 

Mid-November. Is that our bad fortune?  Or should we say it is 

our extreme good fortune that Roger's brother Robert is a willing 

donor and a good match? Our life is both. 

We are fortunate to have loving families and friends, coworkers, 

neighbors, clients - good friends all - who have asked to be kept 

informed of Roger's progress.  This blog will attempt to provide 

information without being maudlin or pathetic.  If I begin to lose 

perspective, I urge you to remind me that life is not happy or sad. 

It's both.