Auld Lang Syne

"Auld Lang Syne" is an extremely old Scottish song that was first written down in the 1700s. Robert Burns transcription of the song has gotten the most attention over time. So the song is associated with him even though it didn't originate with him. The words "auld lang syne" translate as "times gone by." So, when we sing this song, we are saying, "We'll drink a cup of kindness yet for times gone by" In other words, we will remember the past with fondness.  Isn’t that what we usually do?  As human beings, we evolved to be on the lookout for troubles and dangers in the present moment, but our memories overlook and downplay the imperfections of the past. 

As we sing "Auld Lang Syne" tonight and clink virtual champagne glasses, we certainly will think fondly of the past.  We will try to lighten up in the present a bit too.  In truth, the good old days were not as good as we remember and the hardships of now are not insurmountable as we make them out.

Between our nostalgia for the past and our hurry to get on to a better future, we often lose view of the present.  This New Year's Eve, take a few minutes to appreciate now.

“And tomorrow we might not be together
I'm no prophet and I don't know nature's ways
So I'll try and see into your eyes right now
And stay right here 'cause these are the good old days”

          --Carly Simon

          Anticipation

          1971

          Hear the song on YouTube:  http://youtu.be/PDJ_Mz8ftqI 

Vocabulary Word of the Day

Roger is at "nadir."  Here is a diagram showing what that word means in astronomical terms.

 



In medical terms, nadir means "the lowest possible point," which doesn't sound very good at all, and "the point at which we begin to watch for an upward turn" which sounds a little better.  Roger is not generating any of his own blood cells now.

Having been at nadir once before (during his bone marrow transplant), and finding it to be a harsh and scary place, why would anyone go back? 

I told Roger he's like an Antarctic explorer.  He discovers inhospitable places and hates the experience, and yet, he keeps going back.  There must be a word for people like that.

Up On Cripple Creek Without a Paddle

If today’s blog post is unintelligible, it’s because life is convoluted.  It is not straightforward enough to lend itself to a good story.  This is the real thing, full of incongruent tenses, asynchronous thoughts, interwoven and constantly changing roles and ever-increasing complications.  

 

First the medical news:  There is no medical news.  Things are status quo today.  We are not unhappy with this news.

And now for the emotional report, part one:  Roger wakes up just long enough to look over at me and say, “We can’t let our life go to hell in a hand-basket just because we can’t pay attention to it in our last few weeks.”  And then he goes back to sleep.  He’s worried about me, he wants to sit up and take care of his “responsibilities.”  That’s his word, not mine.   Clearly, he cannot pay attention to the business aspects of life now Those of you who knew Roger in his wild, wild, wild years will be surprised at this mantle of responsibility that he’s put on.  .   

And the emotional report, part two, with a musical theme: 

“Up on Cripple Creek, she sends me
If I spring a leak, she mends me
I don't have to speak, she defends me
A drunkard's dream if I ever did see one”

          --Robbie Robertson
          Recorded by The Band in 1969 and covered by just about everybody else ever since.


I never took the song “Up On Cripple Creek” seriously. The jaunty folk-music tune must have thrown me off.  The more I listen to the lyrics though, the more I realize how serious and important the theme was to our hard-partying 1960’s generation.  And strangely, it sums up my relationship with Roger, or at least the way I feel about it in this moment. 

I admit to having borrowed this analysis from Wikipedia. 

“Drawing upon three of The Band's favorite themes -- The American South, American folk music, and alcoholism -- the song tells the story of a miner who goes… to stay with a local girl who he knows will put him up for free while he blows all his money on drinks. Although he admits to having some feelings for his "little Bessie", he uses her hospitality to drink himself to oblivion. At the end of the song, he pushes off once more for greener pastures, although with the stated intention of coming back to his Bessie.” 

Is Roger thinking of moving on to greener pastures?  I convinced him to stay once before.  Can I convince him to stay again?

You drunken miners out there, have a care.  Someday, you may decide to stay, don the mantle of responsibility and take care of Bessie the way she deserves.  And to Bessie – hold tight, sister. No matter how it plays out, this life is going to be a bumpy ride.

Give a listen: http://youtu.be/EisXJSsULGM

"Serious, But Not Hopeless"

Finn Petersen, MD



Dr. Petersen heads up the Bone Marrow Transplant Center here at the LDS Hospital, Salt Lake. Today is the first time we've seen him since Roger had his transplant two years ago. He was in Norway when Roger checked in to the hospital last week. Dr. Petersen has a very charming Norwegian accent, by the way. Some of you (I'm thinking of you, MacAteers) know that already.

 

His assessment of Roger's situation is the title of today's blog post "serious, but not hopeless." IF we can get control of the various infections that Roger has, and IF he can hang on until his brother's T-cells can settle in and get to work, and IF the t-cells can beat the leukemia cells, and IF nothing else bad happens, Roger could get better.

I had an abyssmal day. It was a day of lost cell phone signals, car repair charges that were way beyond what was expected, declined credit cards and saying goodbye to Roger's son. It was a day of frustration and fear. But this news -- this hope -- makes it all seem okay.

We will have to make a plan for taking care of financials. But maybe Roger will be around to help me make that plan.  Maybe things will be okay.

Just Because She's So Cute

I just wanted to share this photo, taken by Lori Guess at "Ready, Pet, Go" Sophie's home away from home, just because she's so cute.  Lori's an excellent photographer, isn't she?

 

Sophie, at home in Missoula

 

Wonders Never Cease

Roger has eaten 3 actual meals today, albeit very small amounts.  This is more food than he's had in an entire week.  Right now he's sitting up in bed eating a croissant and sipping at a latte.  Now that looks more like my Roger!

One day at a time.  Life is good.

It's Been a Busy Day Here in Salt Lake....

The title of this blog post sounds like the opening of a Garrison Keillor story from Tales of Lake Woebegon.  It's a good way to tell a story, what can I say?  I'm a thief, but an honest one.

I feel like I didn't get to spend enough time with Roger today, but enough that I can tell you there is not much change from yesterday. He is a little more alert each day when he's awake.  He still sleeps most of the time.  He eats very little.

He had other visitors today, so he wasn't lonely.  Our dear friend Terri from Missoula and son Chris with girlfriend Dana from Santa Fe, and so many phone calls that I can't return them all.  Sorry everyone - Roger is not able to call you, but I will call you when I can. 

I had to run errands and do laundry today. I only packed enough for a two-day trip.  Looking back on that choice, I don't know what I was thinking.  Maybe it was unadulterated denial to think we would only be here for two days.  Nonetheless, it leaves me doing laundry for both of us every other day.  I went out today and bought a pair of jeans in an attempt to forestall the laundry situation.  I didn't take time to shop for a bargain.  Yikes! Gulp. Oh well.  They didn't take much time to find, they fit, they are comfortable enough to sit around a hospital room in, and I won't have to do laundry again until Saturday.  It's the fastest jeans purchase I've ever made.

I have only been sleeping every other night, when I'm so tired I have no other choice.  Oh yes... I remember now from when Roger had his transplant.  This not sleeping routine is not sustainable for a caregiver.  I must retrain myself to turn my brain off according to the clock.

It's been a busy day here in Salt Lake.  And, oh goodie, tonight's my night to sleep!

A Better Day

Roger had a better day today.  He still slept a lot.  But he also managed to get out of bed, take a shower, change into fresh clothes, eat a little and he even walked in the hall a little, albeit slowly, and with an oxygen tank.  So it wasn't a day of rip-roaring excitement, but it was a good day.  At this point, it's all about him feeling as good as possible.

I just want today, I don't want to foresee the future.

It's Christmas.  I am content. 

Waxing Philosophical on Change...

Here is a timely poem, sent to us by a dear family member.  I wanted the text and photo to align beautifully, but of course, perfection is rarely achieved, especially in Blogger.

Prospective Immigrants

Either you will go through this door

Or you will not go through.

If you go through,

There is always the risk
Of remembering your name.
Things look at you doubly
And you must look back
And let them happen.
If you do not go through,
It is possible to live worthily
To maintain your attitude
To hold your position
To die bravely.
But much will blind you
Much will evade you.
At what cost, who knows?
The door itself makes no promises.
It is only a door.

---Adrienne Rich

Roger is not making any decisions or going through any doors today. He has been on intravenous antibiotics and antifungals nearly 24 hours a day for the last 3 days. They are starting to work a little bit. His skin looks a little less yellow. He is a little more alert. He has had many infusions of platelets and red blood cells which make him feel a little brighter. Of course, everything is relative, and all improvements are little. He's not bounding out of bed, by any means.

The leukemia cells in his blood are not decreasing, but neither are they increasing - yet. If we can get these infections under control, and if Roger can hang in a few weeks until his brother's T-cells can get to work, well....who knows? There will be doors to go through and transitions to make when the time is right.

Life is a mystery.

Visions of Sugar Plums

Roger is sleeping, and sleeping, and sleeping.  It is a relief for him to get some rest at last.  For the last week or ten days his sleep has been interrupted by uncontrollable coughing.  He's catching up now.  Of course, his low blood counts, infections and everything else that he's got going on make him so very tired too.  He is as likely as not to drift off as we're talking.  I think he's got visions of sugar plums dancing in his head.  I hope he does.

Hard News

For our more faint hearted friends:  this would be a good time to stop reading this blog. 

When we came to the LDS hospital for the T-cell infusion, Roger was so ill and weak that they admitted him.  We have had hard news on two fronts. 

First, there are leukemia cells still present in Roger's blood.  The chemo did not do enough to knock it out.  His brother's T-cells will not be able to overcome it.  Thanks for trying, Robert. You made a heroic effort and we thank you.

Second, and every bit as serious, Roger has a fungal infection in his lungs.  It's not the common cold that we worried about.  It's worse.  It has spread to his liver, causing him to be jaundiced and it is the source of the infection that started in his jaw and is now moving up the side of his face.  In other words, it's spreading and can be expected to continue.  He doesn't have an immune system to fight it.

He is on oxygen now which is making him feel better, but the prognosis is not good.  We've had some very difficult conversations this morning and will have more to come over the next few days.  We expect Roger will stay here in the hospital in Salt Lake until after Christmas.  We will talk, ask questions and make plans for hospice care.  And then we'll head home to Missoula.

Bare Knuckle Boxing

John L. Sullivan

The record for the longest bare knuckle boxing match is 6 hours and 15 minutes.  Think of the stamina that would take.

By 1879, John L. Sullivan had already won over 450 fights when he began a tour of America, offering people a chance at $500 to fight him bare fisted.  He won consistently for 12 years.  In 1891 he defended his title against challenger Gentleman Jim Corbett with 10,000 spectators cheering him on.   But Corbett was younger and faster, with a new boxing technique that enabled him to dodge Sullivan's punches. In the 21st round Corbett landed a smashing left "audible throughout the house" that put Sullivan down for good.  Sullivan was counted out and Corbett declared the new champion.

John L. Sullivan didn’t stop fighting.  His victories were less frequent, but he continued fighting for another 12 years.  “Unhealthy” (that has to be the understatement of the century) from the effects of prizefighting, Sullivan died at age 59 with only 10 dollars to his name.

Can you imagine a more brutal lifetime pursuit than bare knuckle boxing?  What stamina it would take to subject your body to those assaults year after year.  Even when you were winning, you would know in the back of your mind that you couldn’t keep it up forever.

Barbaric as it is, bare knuckle boxing has rules.  For instance, it is illegal to strike an opponent when they are down.  The fight with leukemia has no such rules.  It is merciless.  It knocks you down and then continues beating you when you are least able to defend yourself.  If you manage to land a punch, leukemia bobs and weaves and re-emerges as a new opponent with a new fighting style. 

Roger is exhausted, in pain, and “unhealthy” from taking leukemia's punches for nearly 8 years.  Like a champion, he’s still in there fighting.  And what do we hear from the champ’s corner?

“Ultimately, you can’t beat the disease.”

--Dr. Bill Nichols, oncologist.

We know that is probably right.  But we have to believe it is wrong.  After a very long day that started with a transfusion in Missoula, we are in Salt Lake City tonight.  Roger will visit his cheering fans at the Bone Marrow Transplant Center tomorrow.

It's Never the Same

 

Did I say we had been down this road before?  That we knew what to expect?  I was wrong.  Every time leukemia relapses it is different, always playing nasty new tricks.  This time Roger has had bone pain.  He has an infection in his jaw bone that has caused his jaw to be puffy, droopy and red.  It has now crept up the side of his face and given him a yellow-black eye.  His arms are covered with dark bruises.  Believe me, you wouldn’t want to see a photo of him now.

He has a head cold, (Did he catch it from me, or from someone else?  No matter …. it’s a moot point now.)  He has a fever and a cough that keeps him up all night.  He spends most of the day sleeping.  He's not bouncing back from chemo as fast.  He doesn’t eat enough to sustain a bird and when he does eat, it is only over-processed foods like soft white bread, canned chicken noodle soup with saltine crackers.  He refuses to eat anything else.  There can’t be much nutrition getting into his system.  He frequently seems disoriented.  I don’t know if it’s the disease, the head cold, the drugs he’s taking, or all of the above, but I don’t like it.

He is tentatively scheduled to be in Salt Lake City at the end of next week for a T-cell infusion.  It seems unlikely they would proceed while he has an infection and a fever.  Where does that leave us?  At the moment, scared stiff.

A Cure for the Common Cold

 

I came down with a cold just about the time Roger’s white blood cells bottomed out.  He had no immune system at all, and I was a germ factory.  Dr. Nichols speculated about the possibility of admitting Roger to the hospital just to keep him away from me.  Who knows what sorts of germs he’d be exposed to there?!  It would probably be even worse.

I threw together an overnight bag and hit the road before Roger came home from the doctor.  An angel flew through the house on a mission to kill germs after I left and before Roger got home, sanitizing surfaces and door knobs after me.  (You know who you are.  Thank you, Angel!)

I went right over to Urgent Care and then checked in to the Doubletree just 3 blocks from home.  Armed with advice, antibiotics, bottled water, juice, Emergen-C, zinc lozenges, and echinacea tablets, I proceeded to sleep, hydrate and medicate myself through the next couple days.   It worked.  I’ve never seen a cold come and go so fast.  It’s a medical miracle. 

“You’ve just discovered a cure for the common cold.  What are you going to do next?”

I thought we’d start working on a cure for leukemia.

The Roger Report

Mighty strange weather we're having.  We've got studded snow tires on the car so that we're ready to hit the road in the worst weather.  And all we get is rain.  It's been pouring for days on end in fact.  This is very strange for December.  Today we're tucked in, watching old movies and waiting for the word that it's time to hit the old Missoula-to-Salt Lake Trail.

Roger's blood count yesterday was high enough that he didn't need an infusion.  But today he is pale and cold, and his energy is very low.  This probably indicates he'll need red blood cells by tomorrow.  We're old hands at this, but with leukemia, things can turn on a dime, so we are calm, but watchful.

And now for the news:  Roger had a bone marrow biopsy on Friday.  The chemo seems to have worked very well, although there are some leukemia cells still present, so he will probably go through another round of chemo (5 days) and then have another 1-2 weeks to recuperate and rebuild before we go to Salt Lake for a T-cell infusion.  This chemo is no picnic.

The transplant team in Salt Lake is already preparing for Roger's arrival.  Roger's brother Robert has been contacted and will be going to Salt Lake himself soon to donate cells again.  ("Thank you, Robert," is simply insufficient to express our gratitude.)   So, by our best guess, we'll be in Salt Lake for Christmas again, or maybe New Year's (?)  and this will be another series of once a month short trips rather than one long trip.  We can handle it.

Last year when Roger had the chemo/stem cell combo, it held for a year. We'd like it to hold leukemia at bay for longer, but we're willing to settle for a year at a time if that's what we have to do.

2012: it was a very good year.  We'd like another one like that, please.



 

Carrying On

Roger and I were watching an old movie the other day and chuckling about the British stiff upper lip.  They are not a people who gush.  But you have to give the Brits their due - they did manage to keep going during WWII, even while under siege.  I think that's what we're trying to do here in the Merrill household.  A blitzkrieg in the form of leukemia strikes, and we huddle in a shelter until we get a temporary break in the action.  Then we assess the damage, make adjustments, and go on with our lives until the next bomb drops.  That's not to say there isn't some fear and sadness; there certainly is.  We don't know what the outcome of this latest battle will be.  But one thing is sure: life continues even in war and we intend to -- and need to -- enjoy it as best we can.

We had a peaceful and lovely Thanksgiving and spent the day after decorating for Christmas.  Roger, looking very pale, gave direction from the sofa while our good friend Terri and I decorated two trees.  Today Roger is at the hospital (because it's the weekend and the cancer center is closed) getting two units of red blood cells and a unit of platelets.  I wait at home, walk the dog, run errands, and do some more decorating.  I decorate like there's no tomorrow.

You Must Be At Least This Tall To Ride The Emotional Roller Coaster

Boy, Howdy.  What a week!  The title of this week's blog says it all.  I like this amusement park sign, but I'm not sure it would ever be possible to enjoy this ride, no matter how tall a person was.  You'll forgive me if I seem a little loopy and/or my perverse sense of humor emerges today. 

When we reported last, Roger had just been diagnosed with relapsed AML Leukemia.  The good news is that it is the same leukemia and not a new type, which would have been really bad.  The same old leukemia is bad enough, thank you.

They didn't waste a single day.  He was whisked in to surgery the day he was diagnosed, had a port put into his chest and started chemo as soon as the port site had healed enough to be accessed - two days later.  For the next 2-3 days he hobbled around the house in pain, clutching the furniture to support himself.  Dr. Nichols told us "you have to expect bone pain with leukemia"  like we should have known that after all these years.  We didn't know and we weren't expecting it; it had never happened before.  That kind of pain produces anxiety for the person that's suffering as well as everyone around him.  Those few days seemed endless.  But now the good news:  The chemo started working right away -- faster than any chemo Roger has had before.  When the growth of leukemia cells stopped, the pain went away.

It is a drag to have to attend to cancer on the weekends. Shouldn't he get weekends off?  Because the cancer center is closed, Roger has to go to the hospital today.  Hospital staff are not as familiar and comfortable with cancer treatment, and try though they might, they always take too long, fumble too much and sometimes forget things.  It hardly inspires confidence.  But Roger is going there this afternoon to have his chemo pump unhooked.  He's done with the first round.  Hopefully this will be a quick and efficient visit.

Now Roger gets to have a week or so off treatment to recover.  His white blood cell counts are almost non-existent so he can't go to the movies or the grocery store.  He has no immune system, and it is cold and flu season, so we have to be careful.  We are grateful that the learning curve is not so steep this time; we know how to do this.

But, hey!  The first week of treatment is over.  We're up.  We're down.  We're down.  We're UP!  It's a wild ride.

November News

It has been a wonderful year for us.  The combination of chemo and an additional infusion of donor T-cells a year ago did what it was supposed to do.  The juxtaposition of adversity and joy in our life has taught us how to seek - and find - joy.

Roger and I had a lot of fun together this year.



Roger goofing around

We were healthy and active.

We spent time with dear friends and family in Montana,

in Vancouver and Seattle,

at The Garden of 1000 Buddhas

and in Glacier National Park.

And we spent quality time alone at Chico Hot Springs,

in Yellowstone,

Roger, goofing around again.

and in our lovely home.

We haven't had a thing to complain about.

Yesterday, we found out our unwelcome visitor, leukemia, has come back.  Here we go again.  It was a long day at both Missoula cancer centers and at Community Hospital in Missoula.  Roger had a port installed in his chest for easier access for giving chemo and blood transfusions and to draw blood for daily testing.

The plan is to do the same as we did a year ago:  First, chemo to knock the leukemia back into remission, and then another infusion of donor T-cells to keep it at bay.  We hope this time the effect lasts longer than a year.  We know we are only buying time.  This leukemia will always come back.  The question is, how much time can we buy?  We hope a lot.

We love you all and so appreciate your support.  Now that we are back on the medical treadmill, you'll want to know how things are going.  We'll go back to posting regularly on the Bone Marrow Boogie to keep you informed.  And we'll go back to giving Roger the best care ever.

Chemo starts on Monday.  Wish us luck.

Happy Birthdays

I am late getting a blog post up this month.  We were out of town - first in Portland with our excellent friends Sue and John, and then on the Oregon coast for a few days.  We are just back, a little tired and lazy, not quite unpacked. 

Happy April Birthdays to Sue and Roger!

I'll post again soon and make it newsier.  In the meanwhile, all is well!

--Candi

Looking Good

Was it only a few months ago?  It seems like a lifetime.  They told us the odds of success in treating the recurrence of leukemia after transplant were not at all good.  In the early fall Roger went through chemo treatments (again) and recieved more of his brother's stem cells.  Well --- we are dancing a little St. Patrick's Day jig because there is no sign of leukemia in his bone marrow now.

We never forget just how lucky we are.  That's not to say there are no challenges in post-transplant life.  There are.  But after what we've been through, this seems like a cake walk.

We both had bad head colds a couple of weeks ago.  We were miserable and felt sorry for ourselves for a week or so, but even in our misery, we knew that was small potatoes.  The stress of a cold on Roger's immune system has caused a flare-up of GVH.  It's still okay; we'll keep an eye on it.

Roger's blood counts are normal.  His blood chemistry is perfect. 

Lucky, lucky, LUCKY

.

Jig, jig, JIG!

Hello Again

The news from the Merrill household is better, but less newsworthy.  Because Roger and I are busier now with life, we will only update the blog once a month.

First this thought:  Remember at this time of year that, although we have snow and ice on the ground, spring will happen.  There will be pussy willows and forsythia and primroses in our neighborhood too -- eventually.  Then daffodils and tulips will lead us into early summer.  It will happen.

And now the news:  Roger was strong enough to shovel the two feet of snow we had in January.  That's a considerable amount of physical work for a guy who was so shaky on his feet just a year ago.  There is no sign of leukemia, he's got some slight chronic GVH that we'll have to learn to live with, but he doesn't seem to be impaired by it.  His appetite is excellent.  The tables are turned; he's taking care of me these days by doing a lot of the household chores and almost all the cooking.  And, he's becoming quite a good cook I might add.  He even bakes bread!  How could any woman ask for more?

I am still with UM's School of Extended and Lifelong Learning, but in a new position, with a steep learning curve. And I am taking two courses in my MPA program this semester.  I say this not to make excuses for my busy-ness, but because I am so determined to complete the program this year.  I invite you hold me to that resolution.

We are following a new blog....another fond virtual friend in the world of bone marrow transplants.  And, although we've never met in person, we send positive thoughts and energy to Mary Ellen Lanham and her Mom in Seattle, just 10 days post-transplant.  We follow their story day by day and are inspired by it.  That's right - we'd like to inspire others and yet we find they inspire us!  If you're so inclined, check out their blog: http://mary-elizabethsbump.blogspot.com/

And finally, I'll finish up by sharing a poem that I lifted from Mary Ellen and her Mom.  I love this. Samuel Green is, I believe, the poet laureate of Washington State.  To all my friends in Seattle...why didn't you ever tell me about him?

Oct. 18 New York City

On the subway an old

Polish man takes me in charge,

rides two stops past his own

to make certain I find

the right place to get off.  When I try

to thank him, he shakes his head

no, forget it.  No one, he says,

should be lost when someone else

knows the way.

Happy New Year: Many Blessings, Good Fortune and Happiness

January is a time for reflection and making resolutions: perhaps to shed a few pounds, to tighten up those flabby abs, to to manage the family finances better or to reconnect with old friends.  Roger and I make New Year's resolutions every year, both individually and jointly.  It's as good a time as any to think about how to create the life we really want and recommit to making it happen.  I won't bore you with all our resolutions for 2012, just the most important:  Roger resolves to maintain and improve his health, keep control of the GVH symptoms and stay in remission.  I resolve to finally complete my master's degree in Public Administration (it has taken far too long) and master the skills I need for my new position at The University of Montana.  By the end of the year, we'll be completely different people, so much improved you'll hardly recognize us!

We love "junking" and have quite a collection of miscellaneous decor pieces as a result.  A few years ago we bought these antique Chinese marionettes and have never really been able to display them properly.  This year they hang in our front hall entry as a celebration of Chinese New Year, which is coming up January 23rd.  The Chinese New Year is less about resolving to improve oneself, and more about celebrating life and, of course, new beginnings. 

Unfortunately, we don't know a thing about these puppets.
The smaller one is about a foot tall, the larger one about 18 inches.

Their eyes and mouths move.  Their fingers are fully jointed.
They are clothed in silk, which is now in extremely delicate condition.

 

Their features are exquisite and they have real human hair.

 The marionettes are so complicated with moving parts, the puppet master must have been very nimble and well-practiced to bring them to life.  Imagine the marvel of watching a puppet show with these beauties!  And who were the people that gave their hair to the enterprise?

A handful of antique mah jongg tiles completes the display.

Happy New Year, Happy Chinese New Year and Good Fortune to you all!

--Roger and Candi