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.