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

A Christmas Greeting To All Our Family and Friends

We've already gotten our Christmas present this year, and it was just what we wanted.

Lazy, lazy, lazy describes us.  After so much drama the last few months Roger and I are planning to just relax and enjoy this holiday season.  A pretty Christmas tree, a special dinner, time together and best of all, good health is the best Christmas present we've ever had.  We don't need another thing.

Roger has a slight case of GVH, but it's calmed down quite a bit.  We have to pay attention to his appetite and keep his weight up, but even that doesn't seem too daunting.  The rash and sensitive mouth have settled down.  His blood counts remain strong.  This is exactly what we want.  The longer we can keep this going, the better our chances of beating leukemia altogether.

To our family and friends - we wish you the kind of contentment we're experiencing this year.  Peace and Joy.

--Candi

Odd how things have changed in such a short time. From light to dark and back again. Candi and I are sharing a calm, sweet holiday with our dog Sophie. I want to thank everyone for their support. 

Love and kisses. 

--Roger

The Future's So Bright - I Gotta Wear Shades

It's a beautiful winter day for our drive back to Missoula today.  Clear roads and bright skies are expected along the whole route.  We'll have to make a quick stop and buy Roger a pair of sunglasses before we leave Salt Lake.  He forgot to bring his from home.  The clinic report says he's got GVH, perhaps an acute case overlapping with a chronic case.  This looks like a rash on his face, chest and back, dry eyes, super sensitivity to sunlight, strange sensations in his mouth including an aversion to spicy food and difficulty swallowing.  Unfortunately, it also shows up as lack of appetite and weight loss.  He's lost a few pounds since our last visit.  That voracious appetite of a few weeks ago is gone.  We'll have to keep close tabs on this and make sure he eats whether he wants to or not.  Fortunately, Dr. Beatty in Missoula is well-versed in treating GVH.  We won't have to come back to Salt Lake next month.  

Roger so wants to hear about his long-term prospects, but all they will tell him is that there are no leukemia cells present now and along with the Graft Versus Host Disease, we are getting the Graft Versus Leukemia effect that we wanted.  His body is fighting leukemia effectively now.  That bodes well, but there is still plenty of work to be done.  He needs to eat conciously, keep his weight up, build up the muscle that he's lost over the last 18 months, avoid sunlight and tolerate the effects of GVH as best he can.  The longer his body can keep leukemia in check, the better the long-term outcome will be.  It may not be the promise of a rose garden that Roger so wants to hear, but considering where we've come from, it's not bad at all.

This morning we've just got time for a cup of coffee and a trip to the mall for sunglasses, and then we're on the road to Missoula.  Back to pick up the dog, do laundry, housework, restock groceries, and get back to work on Monday.  It's a life.

November 18, 2011

 

We've had a couple of tense weeks waiting for results of Roger's most recent bone marrow biopsy. We both had an intuitive sense that the news would be positive or maybe we had just slipped into wishful thinking.  It's hard to make objective observations when so much hinges on seeing the right symptoms.

Roger has been feeling strong and is more energetic than he has been for a year and half.  He's gained a few pounds and has had to revert to his pre-leukemia pants with a larger waistband.  His stamina and his mood have improved.  A few days ago he broke out in a  rash on his chest and back that looks like prickly heat.  It was biopsied and confirmed to be Graft versus Host Disease.  That means his immune system is working and causing GVH but we wondered if his immune system is doing what we really wanted it to do.  Is it fighting leukemia?

We held our breath waiting for a conference call from the Transplant Team in Salt Lake to discuss biopsy results.  The call came this afternoon.  Drum roll please....

• There is no evidence of leukemia.  Roger is 100% in remission.
• The DNA in Roger's bone marrow is now a 100% match with his brother's.
• He has a mild case of Graft versus Host Disease. 

< huge sigh of relief here >

What does this all mean?  It is not a guarantee that the leukemia won't come back.  Sadly, life never offers guarantees.  AML is a very aggressive form of leukemia and Roger's case has modeled that aggressiveness.  But for now, this is the best possible news that we could hope for.  We just want to keep it going.  The longer Roger's new and improved bone marrow and immune system can fight any leukemia cells that pop up, the better the chances the leukemia will be wiped out altogether.  That's right, we still have reason to hope we're on the path to a cure.

Last year we ordered a bland Thanksgiving dinner from the hospital menu and made the best of it.  We thought we might have to do it again this year.  I have never been so glad to be wrong!  We'll be having a very happy Thanksgiving at home, with many extra helpings of THANKS.

Right after Thanksgiving, we'll be on the road to Salt Lake City again.  Staying on track, staying healthy, fighting for a cure.