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.

Random Notes from Salt Lake

The Missoula to Salt Lake drive on Thursday was nice.  We added a little extra loop so that we could drive south along the western edge of the Tetons and through the Targhee National Forest, some territory we had never seen before.  It added three hours to our trip, but it was a beautiful drive on a beautiful day, we were in a fine mood and enjoying our "new" car.  Since Roger has been feeling better, life seems much less stressful.  We wanted the day to last. 

Today we took the new-used car to the dealership to get extra keys made, because there is no Volvo dealer in Missoula.  Apparently you can't just run in to Ace Hardware and get an extra key cut out from a roughly shaped hunk of metal anymore.  Each key has to be specially programmed for the car.  And it takes a couple of hours and costs a pretty penny.  (gulp. what have we gotten ourselves into?)  So we dropped the car off early this morning and got a ride up to the LDS hospital  where Roger was poked, prodded, checked over and biopsied.

We won't have the test results back for about two weeks, but here's a sneak peek.  Everyone seems pleased with the results of the T-cell Infusion.  To the naked eye, it appears to be working. Roger has gained 8 pounds, his blood counts are nearly normal.  He has lots of energy.  Here we are at 8pm, just getting back to our hotel; we've been on the go since 8am.  This is the first time in nearly two years I've seen Roger with this much energy.  There is no sign of GVH.  We're told we might be getting the Graft vs Leukemia effect without GVH.  That would really be ideal if, in fact, that is happening.  Will these remarkable results last?  That's a question no one can answer.  Doctors, nurses, PA's each in their turn advise us to "enjoy this."  We will take that advice to heart.

We had a nice reunion with Roger's two sisters and his brother/donor this afternoon.  It was wonderful to see everyone.  Tomorrow we are rushing home just ahead of a big snow storm that's supposed to be heading our way.  At least, we hope to stay ahead of it.  No side trips this time.

Here's a quote from that book I picked up in the bookstore the other day:

"Having a not entirely reasonable expectation that things will go well turns out to be exactly the sort of delusion that increases your chances for success in this world. If in fact you are skating on thin ice, the last thing you want to do is slow down and think about it." --- Mark Vonnegut, M.D. Just Like Someone Without Mental Illness Only More So

Mark Vonnegut is the son of Kurt Vonnegut Jr, of course a huge favorite author from the 1960s-80s.  This autobiographical book is a description of Mark's remarkable life, his triumph over mental illness and other life challenges.  It is funny, smart and inspiring.  I may share more quotes later.

This Must Be My Day

Saint Agnes, the Pathetic

 Holy Candi!  It’s All Saint’s Day

I spent about ten minutes in the bookstore today paging through a book that I thought would be a good read.  Mustering my self-discipline, I put it down and said to myself “I don’t have time to read just for fun,” and walked out.  I have honed the art of self-denial to such an extent that I am the envy of the freaking saints.

We have this life, this miraculous but busy life.  Working, taking one class each semester in my graduate program (I know, I know, I'll never get through the program at this rate.)  keeping healthy, which, in our household means shopping and cooking well-balanced and appealing meals every day, and keeping a germ-free house.  And now, we have what has become our once-a-month pilgrimage to Salt Lake.  It seems we are constantly in some stage of packing or unpacking.  Everything we have to do fills up all the time we have to do it in.  When would I have time to read a book just for fun?

This is the life we fought like demons to keep. And yet, sometimes I get this niggling, ungrateful feeling that our life is small and limited.  That bothers me.  So I’ve given it some thought and here’s the deal.  It’s not from lack of gratitude; it’s just the will to live exerting itself.  The trick is to let off steam before it blows.  Taylor reminded me recently of a cartoon that made us laugh – a 1960’s housewife with a melodramatic expression of raging anxiety on her face, her speech bubble saying, “The baby was crying, the dog was barking. I had to burn it down!”

Don’t worry, I won’t burn it down.  But, I did go back and get the book and I will make the time for some fun reading.  I’ll let you know how it turns out.

October 24th Note from Roger

Today I feel great. My body is producing healthy cells. I no longer need transfusions and I’m eating with real enthusiasm for the first time in a year. I’m getting stronger. There is something good going on, we're just not sure what it is. It may be the effect of the infused stem cells, but could it also be that I'm in remission?  I’m seeing the doctor tomorrow, so we'll hear what he and the transplant team in Salt Lake think.

Candi and I are taking it a day at a time, enjoying the cold, gray, wet mornings that turn bright gold in the afternoon. Fall has always been a favorite time for me. It brings back memories of college and rejuvenates my spirit. We will be road-tripping south once a month for medical tests through the fall and winter; the next trip coming up the first week of November.  We're actually looking forward to our drive.  This time we'll take the scenic route along the Teton mountains down through Logan into Salt Lake. The Fall colors will be spectacular. 

--Roger

We Won't Be Scared to Death

This is a spooky time of year.  It seems only right to add a Halloween image to our blog since Roger and I are "whistling past the graveyard" as they say.

We know those nasty leukemia cells are likely lurking in the dark recesses of his bones.  He had only that one round of chemo in September - probably not enough to wipe it out completely.  We can't use chemo now without the risk of killing the good T-cells that Roger just received.   On November 4th we'll be back in Salt Lake City for a recheck and a bone marrow biopsy, so we'll get to see whether the T-cells are holding their own.  All we can do now is wait and hope our little heroes are in there fighting.

In the mean time, we go about our day-to-day activities and try not to focus on our fears.  We're looking into buying a used car and I'm making a meatloaf for dinner.  Now THAT'S a scary life!

Heaven!

It felt like heaven to sleep in our own bed last night.  There are things that should get done around the house before the work week begins that will probably not get done.  That will just have to be okay. 

We don't expect to see any immediate effect from the T-cell infusion.  It's more likely that effects will be visible in about in 3-6 months.  We'll go back to Salt Lake City for rechecks with the transplant team on November 4 and December 2.  In the mean time, of course, Roger will continue being supported (and treated for leukemia if necessary) by Dr. Nichols at Montana Cancer Specialists, and Dr. Beatty for GVH.  There will be plenty of time for all that.

Today it's Sunday.  It's time for coffee, the newspaper, and a long walk with the dog.  Heaven!

...Then You Win

Greta, the nurse coordinator for the LDS transplant team gave us a card just as we were leaving the clinic yesterday.  It has a quote from Mahatma Gandhi that's worth sharing.

"First they ignore you,

then they laugh at you,

then they fight you,

then you win."

T-Cells Completed

And... it's done.  Like Roger's allogenic transplant, the actual procedure of infusing T-cells is anticlimactic. After all the weeks of preparation and talking about the pros and cons. . . . the whole thing was done in less than an hour.  I'll offer more details and projections over the next few days.  Today, just a few photos of the experience.

We'll stay in Salt Lake tonight and, barring unforeseen circumstances, will drive home tomorrow.

Roger sports a new wrist band that gets double, triple and quadruple checked against the T-cells.

The big container from the cryogenics lab is delivered.  Robert's cells have been frozen for almost a year.

When the assistant from the cryogenics lab opens the container, vapor from the dry ice flows eerily out into the room.

Nurse Jared hangs the bags and oversees the whole procedure. Five bags and we're done.

Because the cells are right out of the freezer - barely defrosted - Roger is wrapped in warm blankets.

Here's what good T-cells look like as they are going in.   Now we just want to see them get to work!

On the Road Again

The drive between Butte and Idaho Falls seems endless.

The transplant team called yesterday afternoon and told us to have Roger in Salt Lake on Thursday so that he can start T-cell Therapy first thing Friday morning.  When they said "soon," we didn't realize they meant this soon.  And, we thought this treatment could happen here in Missoula, but no, it's got to be Salt Lake. And, he's not allowed to fly.  But what the heck, we will do what we have to do.  So, it's another road trip for us.  

Today we are scurrying around home, making babysitting arrangements for Sophie, doing the laundry that didn't get done last week, filling prescriptions (again), picking up a rental car, packing (as soon as laundry is done!)  the usual road-trip craziness.  Early tomorrow morning we'll hit the road.  I-15 South is becoming very familiar.

Stay tuned, there will be news bulletins from SLC. And hold this thought:  Those little T-cells are going to get in there and give Roger just the boost he needs.  They will kick leukemia's ass.

Attention!

Congratulations to our son Casey on his promotion today.  

We now refer to him as Major Casey McKinney.

Ooo Rah!

MSO --> SLC --> MSO, 1050 miles RT, Tues-Fri, 48 hours non-stop

Preparation for our road trip to Salt Lake began with two transfusions on Tuesday.  While Roger sat through that, I ran the necessary errands, filled the prescriptions, made sandwiches and packed the car.  We got on the road late: 3pm and drove as far as we could safely.  Wednesday morning we drove the rest of the way into Salt Lake and made it just in time for an appointment with the transplant team at LDS hospital.  After the dramatic build-up and such effort to get there, we were expecting news, a miracle, a plan, something to make us feel like it had all been worthwhile.  Instead, we were greeted with cold and disheartening statistics and a list of "options" that were really not options at all.  We didn't need to drive all that way to be told that AML Leukemia that has come back 3 times is "bad."  After fighting this disease for six years, we already know how bad this is.  We didn't need to be told the survival rates on patients receiving T-cell Infusion Therapy for recurrence of leukemia after transplant are not encouraging.  We did not need to hear that statistics don't support a second transplant as a viable option.  It was upsetting to be met at the door with statistics and apologies.

We spent two full days going to appointments, weeping, talking about final wishes, making worst-case scenario plans and wandering in a fog.  We drove home on Friday and got to Doctor Nichol's office in Missoula just in time for another transfusion.  We spent the nine hour drive home talking and processing the information.  By the time we got back to Missoula, we were pissed.  Where was Roger in all of this?  Statistics on the treatment of AML leukemia, gathered over many years, including patients of all age ranges, in all stages of health and ill-health have little bearing on how one individual guy, one tough individual guy in good health (except for having leukemia) is going to respond to a particular treatment.

Screw the statistics.  We're doing this.

One good thing came out of this trip.  The stage has been set  for the next stage of treatment.  The results of the skin biopsy to tell us if Roger has a little case of graft-vs-host disease should be in early next week, although it already seems clear there is little or none.  Once that’s completed, the treatment will begin with all due haste.  He'll be given his brother's donated cells that were frozen a year ago and his progress will be monitored by the transplant team in SLC every 30 days.
  
We’re doing this, and we have every intention of doing it well.  Add that to your statistics, scientists!

Good News at Last

Happy Birthday Candi!

Good news at last.

It’s been a while since we could post good news. I’m pleased to report that the results of my most recent bone marrow biopsy showed no leukemia cells. This was the second round of chemo.  The first didn't have the desired effect, and we were getting nervous.  

I’ve been receiving medical support for the past two weeks including regular infusions of platelets, red blood and neupogen shots. I still have a way to go before they'll say I'm in remission. We need to see the production of more healthy blood cells. But this positive development means we can begin to look toward the future and other treatments. 

The transplant team in Salt Lake has requested we come down next week. Among other things, they are going to biopsy a rash that has developed on my face. If it is evidence of graph vs host disease then perhaps the infusion of Robert’s T-cells will be a viable procedure after all. We might in fact be back on track with the original transplant. This sounds like wishful thinking.  It is certainly hopeful thinking.  By the end of next week we should know more. 

Charge up the iPod and load up an audio book.  We're going on a road trip.

--Roger

September 17, 2011

There's not a lot of news from the Merrill household this week.  We are still waiting to see if the chemo worked.  Roger has been on "support" (meaning 1-2 transfusions every day) for the last three weeks.
 
We had a bit of good news on Thursday.  His neutrophils doubled overnight.  That means his body is working -- producing something worthwhile.  Only a bone marrow biopsy will tell whether it is working hard enough and doing the right thing. What is happening inside those bones?  So, although it hasn't been long since his last biopsy, he'll have another one on Monday.  It will be a few days before we get news, but of course, we will post it as we get it.

In the mean time, Roger is sleeping well, eating well, walking the dog every day, and working at his computer a little.  He gets tired easily, but overall is not feeling too bad.

The hardest part is the waiting.  Our nerves are frayed.

It's a Wild Life in Missoula Montana

Some of you may remember this.  It was taken September 14, 2010.  This photo, by Missoulian photographer Kurt Wilson, made the national news and won first prize in a regional journalism contest.  That's our house.  That bear is falling out of our tree.  That's my flower garden being trampled by the Fish, Wildlife and Parks people.  But what a photo!

This shot, also by Kurt Wilson, appeared this week in the Missoulian.  It looks like it was created in Photoshop but it is the real deal.

I walked by this same mountain ash tree a few days later and saw about 50 little birds stuffing themselves on the ripe fruit.  Between the birds and the berries it was prettier than a Christmas tree, and much noisier.

We see wildlife so frequently here in Montana.  I tend to forget that an osprey flying overhead, a heron standing in the river, a mama deer with  twin fawns using the crosswalk on a busy street, and a bear rummaging for fallen apples are not common sights for most of our friends and family.  So I wanted to share this with you.

--Candi

Mulligan

It appears my bone marrow transplant was a success in so far as I survived the procedure and the donated cells did engraft.  As it turns out, my brother Bob was too close a genetic match so I did not get sufficient graft vs leukemia effect. Go figure. So here we are, virtually right back where we were a year ago.

I am currently undergoing a second round of chemotherapy. The first didn’t take. We’re using a new drug my body hasn’t experienced before. Remission will most likely take at least two rounds of chemo, over the next two to four weeks. If this succeeds in knocking the leukemia back into remission, the next step will be a second transplant. That’s right, a do-over! This time however we will use an unrelated donor (no offense, family). The current donor list from the national bone marrow registry shows 38 potential matches for me. Of course the selection narrows considerably once serious screening begins.

There is much to do and many obstacles to overcome before a second transplant could happen. I know how this sounds: impossible. For several days after getting the news, Candi and I were undeniably depressed. But the human spirit is amazing. We have both regained our footing and are again proceeding on a path very similar to last year. We might find ourselves once again ordering Thanksgiving dinner from the hospital menu.  Now that is something to dread!

We don’t know anything with any degree of certainty, so we’ll take it one step at a time. We learned a lot the first time around and we will use that experience to our advantage. The next few weeks will be interesting.

My love to everyone. Stay tuned.
--Roger

Love and Marriage

Although it is disappointing, it is not uncommon for leukemia to recur after a bone marrow transplant.  Years ago the only hope for patients who had relapsed after a transplant was a second transplant.  That’s not a desirable option.  A newer and more promising therapy is the donor leukocyte infusion.  In this treatment, lymphocytes from the original donor (Roger’s brother) are infused into the recipient’s body much like a blood transfusion. These donated white blood cells augment the patient’s immune system so that it can recognize and destroy cancer cells. The goal is to induce a graft-versus-leukemia effect and hopefully lead to remission.

The last few weeks we’ve been discussing this option and learning more about it.  Roger is getting prepared with standard chemotherapy treatments.  This will reduce the amount of leukemia cells so that the donated lymphocytes stand a better chance.  We are still looking for a long-lasting remission – perhaps even a cure.

We know that graft-versus-host disease comes along with graft-versus-leukemia effect.  You can’t have one without the other.  That means complications and a necessarily circumspect life.  But we are going for the cure.  We have to.

It hasn’t been scheduled yet, but we know the treatment will occur in Salt Lake City fairly soon.  On Tuesday Roger will have another bone marrow biopsy.  Based on the results his medical team will decide to send him to Salt Lake right away or have him go through another round of chemo here in Missoula first.  

Waiting is the hardest part.

The Dog Days of August

The term "dog days" refers to the hottest part of summer.  It defines any stagnant time period that is marked by a lack of progress.  What an apt term to describe this week.  The flower pots on our front porch are exhausted.  We can not water them enough now to make them look fresh again.  It's time to prop up tomato plants that are heavy with green tomatoes and pull out the herbs that have gone to seed.

It's hard for us to give Sophie enough exercise when Roger doesn't feel well enough to walk her, so I took her to the "bark park" for Saturday and Sunday romps.  Missoula has a big wonderful off-leash dog park, located on an island in the middle of the Clark Fork River.  Once behind the big gate, dogs are only confined by the water's edge.  It's a pretty active place at this time of year with a lot of big dogs tirelessly chasing sticks into swift river currents.  Sophie doesn't fetch and she doesn't venture into deep water.  But she likes to run with the dogs who do, barking out advice and encouragement.  It's funny to watch her on her short legs trying to keep up with the elite athletes of the canine world.  She is completely worn out by the physicality and the sheet delight of sniffing, running and splashing in the river.  Now we'll get a couple of days of peace and quiet while she sleeps it off.

Roger is feeling pretty low as an after-effect of two weeks on chemo.  He's had several transfusions of platelets over the last two weeks, but no red blood so far.  You might remember from a blog post way back in November, they discovered that he has developed antibodies  to a couple of RH factors found in 98% of human blood. Finding a source for the rare blood that he needs presents a challenge for the blood banks.  A shipment will arrive tomorrow from Great Falls, he'll have an infusion and will probably feel a bit perkier after that.  He's completely off Cyclosporin now.  This will allow his own immune system to fight leukemia, but we are ever alert for signs of GVH.  

We are sticking pretty close to home these days, but that's okay.  These are the bright, hot dog days of summer and it's dim and cool inside.  Home feels like the right place to be.

August 16 Report

Gratitude:  Thanks so much to everyone for your blog comments, emails, text messages, phone calls and cards.  It’s not possible for us to respond to all your messages individually right now, but contact with all of you is a life line.   It’s humbling.  We never cease to be amazed at how supportive our family, friends, coworkers, and neighbors are.  You are our community in the truest sense of the word.

The Health Update:  Roger completed a round of chemo today – 7 treatments in all.    We are fortunate that he hasn’t experienced much nausea this time.  His energy is a little low, but he can eat whatever he wants, he has a good appetite and feels pretty well.  His blood counts are monitored every day.   In a few days they’ll decide whether to do a second round of chemo or not.  In two weeks he’ll have another bone marrow biopsy to see how many leukemia cells are there.  It has been decided that we will need to meet Roger’s brother Bob in Salt Lake City in a few weeks for an infusion of those much-needed T-cells.  The treatment is not scheduled yet, but there is agreement among Roger’s doctors that the sooner it can be done, the better.  So we almost have a plan.

The Routine:  I am working every day (it’s the busiest time of year at the university), trying to accompany Roger to his appointments when it seems like there might be information forthcoming, and trying to bank a little sick time so that I can go to Salt Lake City with him a few weeks from now.  Roger spends the majority of his time having chemo treatments in the morning and transfusions in the afternoon, interspersed with meetings with two doctors.  He’s also consulting on a few communications projects and creating beautiful watercolor paintings in his “spare” time.   Life is incredibly busy.

The Insanity:  Many people have expressed concern about how we’re dealing with the stress.  It’s fair to say our anxiety is proportional to the situation.  And yet, we are holding together.  There is real work that we must do every day; we don’t have time to worry about maintaining a well-balanced life.  Remember Maslow’s Hierarchy of Needs?  Physical health comes first, mental health comes later.  When life slows down a little bit, we’ll schedule a nervous breakdown, get a massage and have a good cry.

Stay Tuned.  News updates will be posted every few days.  There will not be film at 11, but stay tuned anyway.  We like having you in our lives.

A Note from Roger

Hello to everyone. Thought I would give an update on my health. The leukemia has returned, more likely it was never truly gone. We got the news last Friday and it brought both Candi and I  to our knees. Candi is holding up great, but I notice a certain restlessness. A kind of subtle and constant discomfort. It’s breaking my heart. I feel bad for everyone that has been pulling for us. But what can you do? I am in day three of a 7 day chemo treatment plan. This most likely will be followed by another round depending on results. My counts have stopped falling. This is the first good news we’ve had. In addition, I have been slowly eliminating the drugs designed to ward off rejection of the transplant. This will increase my T cell production and jump-start a graft vs leukemia effect. My natural immune system will begin to do combat and in conjunction with the chemo could eliminate the dreaded leukemia. The downside to all this is I am becoming more susceptible to graft vs host disease in particular and other infections in general. Back to the life of a recluse. In a month my doctors will decide if it is necessary to return to Salt Lake for a quick infusion of brother Bob’s stem cells. The man is a champ.

So the transplant didn’t cure the disease. But it was not for naught. The graft did succeed. I have healthy bone marrow thanks to my brother. And if we hadn’t done the transplant I wouldn’t have these treatment options today. We still have a very good shot at this thing,

I’m feeling very strong. I’ve been working and painting and will continue. Our dog Sophie is healthy, happy and funny. The weather is clear and beautiful and I am surrounded with love and good will.
--Roger

August 9, 2011

Some days it feels like the only path is straight up.

We are trying to wrap our brains around this latest health challenge and the associated risks.  We so wanted to put leukemia in the past and move on to a new, healthy life that it was difficult to accept anything less than a flawless, speedy and full  recovery.  This is not a signal that Roger's transplant has failed, it's not even a surprise to those who know about bone marrow transplants.  This is a curve in the path. 

Imagine us as mountain climbers.  We have struggled to make it to the summit and thought we were almost there.  And then the clouds parted, we saw the mountain top and realized that it's still a mile away.  It's exhausting and discouraging, but the only thing to do is to adjust our thinking and keep climbing.  In the length of time it takes us to alter our point of view, we can go from being unhappy to being happy.

Roger started a series of chemo treatments today.  It's too soon to say how he will respond or what side-effects he'll feel.  One thing we know for sure about daily treatments, trips to the pharmacy and an increased number of medical appointments:  it puts a crimp in our schedule.  And there are only the two of us and our dog to be concerned about.  I can hardly imagine how leukemia patients with young children can do it all; they have my heartfelt admiration.

In a few days we can let you know more about how the treatment is going. I expect we'll be a few steps closer to the summit by then.

The Third Time’s the Charm

I woke up at dawn today, too cold to go back to sleep and too cold to hop out of bed to close the windows. What has happened to this summer that never really got started and seems to be coming to an end already?  Did I blink and miss it?

I huddled there under a thin blanket thinking about writing for the blog and wondering how I would approach it.  How do you break the news that leukemia has come back for the third time?  Roger and I spent the last two days on the phone and email relaying the news to friends and family and trying to let the truth sink in for ourselves.

Some leukemia cells survived the pre-transplant chemo and those little buggers are trying to stage a coup.  The possibility of this happening was mentioned to us before the transplant, but at that time a lot of things were mentioned.  We chose to focus on the positive possible outcomes and didn’t think about the negative ones.  Fortunately, Roger’s medical team thought about it and they have a contingency plan. 

Tomorrow Roger will start chemo as a first strike, and he will be weaned off immune-suppressant drugs over the next two weeks.   This will give his donated T-cells a fighting chance to deliver a second strike and wipe out the leukemia cells once and for all. 

There are some drawbacks, of course.  Roger will almost certainly develop graft vs host disease without the immune-suppressants, and he'll be susceptible to infections.  He'll have to live the hermit's life again to protect himself.  And if he can’t kick the leukemia this way, we will go back to Salt Lake City in about a month for a very specific "mini-transplant" of neutrophils -- the white blood cells that fight infections.  

We’ve let the blog lapse over the last few weeks as life has gotten dull.  Sorry to liven things up this way.  We will start posting regularly again to keep you informed.

I did decide finally to get out of bed to write this down and get it posted.  The room eventually warmed as the sun rose higher.  The dog begged to be walked, there was coffee to be made, and breakfast.  We dressed ourselves in our garden gear and planted three quaking aspen saplings in our front yard (photo at right).  They are graceful little living things.  It's not just bad things that happen in threes.  Good things happen too.  Roger has beaten this twice before.  And we know, as Taylor says, “The third time’s the charm.” 

How's Your Summer Going?

Every year in the first week of class in grade school we wrote the requisite report on summer.  It's too soon to call Summer 2011 over by a long shot, but here's a preview edition of "How I Spent My Summer Vacation by Roger and Candi Merrill."

Roger walked Sophie every day on the Greenough Park loop trail.

We spent Memorial Day beside Lake Coeur d'Alene.

 

We nurtured ourselves by nurturing our garden.

We supported our friend and neighbor, Dave Strohmaier, in his run for Congress.

The 4th of July in Garnet Ghost Town with Taylor.

The Pow Wow in Arlee.

What the photos don't say is that we cleaned the garage and mowed the lawn.  We visited with friends and family.  We barbequed.  We laughed.  We rested and recuperated after a long, challenging winter.  Candi went back to her graduate studies.  Roger healed.  Our life had a few limitations, but barely enough to slow us down.

At 8 months post-transplant, life was good and very good.

Good Pizza!

We don't have any real news today, just some fun photos to share with you.

 We keep thinking this is the last week, the last day it will be cool enough to make dinner in the oven, but the cold weather drags on and on.  Today it actually felt good to stand next to a 500 degree oven.  We'd like to have some summer weather, but homemade pizza is a good consolation prize. 
 

 Roger, the art director, makes sure it looks just right.

 You can't just put the tomatoes on in any old way.  The pizza has to be visually pleasing.

Red, green and yellow tomatoes from the Farmer's Market.  Who could grow a tomato in this cool weather?  The tomato plants on our patio are only ten inches tall.  I suspect these came from a hothouse!

Where ever they came from, heirloom tomatoes, artfully arranged, make a fine pizza.

Summer Saturdays

 Roger and I are just beginning to get out into the world and this was a perfect day to venture forth.  We had breakfast at the Missoula Saturday Farmer's Market, conveniently located 4 blocks from our house.

Missoula has several farmer's markets dotted around town and people have their preferences. This one is"our" market. It's an easy walk, except when we buy  more than we can carry home.

Like Siberians, on the first truly warm day of the year we hardly know what to do with ourselves.  We started out in the early morning wearing coats, and then had to peel them off to reveal our pale, pasty skin.  It's been a long time since we've seen the sun!

  

It took 45 minutes to get a cup of coffee, but we don't go to the Market for speedy service.

We go for the kuchen.

A lot of towns have Farmer's Markets, but there probably aren't many that have an old locomotive right in the middle.

Missoula becomes a charming little village when the sun shines. You never know who you'll run into.  We frequently bump into neighbors and friends at the market who, like us, are splurging on pastries and buying more locally grown produce than they can comfortably carry home.

Memorial Day Update

Greenough Park in the Autumn

Between internet connectivity issues and laptop problems, I’ve been out of touch for two weeks. I’m connected finally, and happy to report that the only problems in the Merrill household are technical ones.

I accompanied Roger to his doctor appointment last week for the first time in two months. I had been feeling strangely disconnected from that facet of life too, after being so intimately involved for so long. Roger is doing a fine job of taking care of himself, taking himself to doctor appointments and managing his own medications. I’m just “arm candy” to him now. (wink)

Roger looks thin, but healthy. His hair has grown back. His weight is holding steady and he has a good appetite. His blood counts and chemistries are excellent week after week. His energy increases continually. Gradually, he is returning to work, meeting with clients one-on-one after checking to make sure they haven’t got a cold. As we work around the house doing our weekend chores, I notice that he rarely takes rest breaks now and is able to keep busy the whole day without adverse effects. He walks Sophie through Greenough Park every day – about a 2 mile loop. He is taking on more of the household chores, and is even able to mow the lawn now, which is really good news for me!

Life is good if not quite back to normal. Roger visits Dr. Beatty’s office at Montana Cancer Specialists twice a week. Each Monday he has blood drawn and sent to the Mayo clinic for testing. On Fridays he meets with his doctor to get the results. We’re lucky that Missoula is such a small town that the doctor’s office is only five minutes from home! At least he doesn't have to spend much time in the car commuting to and from.

Roger still has to follow some rules with regard to contamination.  He's such a rebel, he wants to break all the rules.  But I am the bacteria police, and I'm on his case.

All the IV medications have been discontinued or replaced with oral medications.  We were disappointed last week to be told that Roger won’t get his central line taken out until November. Because he’s at the upper end of the age range for transplants, they are being extra cautious. I guess that makes sense. We attached too much importance to it – as if removal of the line were a milestone. In fact, in the grand scheme of things, it doesn't matter. We adjust our thinking and move on.

What’s next? Roger will continue to check in with the doctor regularly throughout the summer and fall. In November we’ll make a trip to the Bone Marrow Transplant Clinic in Salt Lake for a repeat of all the tests he had prior to the transplant. We look forward to a little family reunion then, another chance to thank his brother/donor and we especially look forward to thanking the transplant team at LDS Hospital for a job well-done.

Life is good.

Taylor Pays It Forward

Our daughter Taylor decided a few months ago to become a bone marrow donor.  Roger and I are so proud of her. 

Taylor Tallas, Chilliwack, B.C., Canada

Candi:  Becoming a bone marrow donor seems like a big step. Why did you make that decision?

Taylor:  It’s sad, and a little embarrassing that it takes something so serious to rock your world before your eyes are opened.  We are all so busy with our day-to-day lives, and don’t give it a second thought… until it effects you or someone you love.  It’s something that I could have and should have done long ago, but now I feel it more than ever…Time to pay it forward!

Candi:  Why would you want to donate to someone you don’t even know?

Taylor:  I had such a feeling of helplessness when Roger was sick, I hope that in some way, I can help ease that feeling for another family.

Candi: Have you already been matched with someone who needs a transplant?

Taylor:  Not yet, and I may never be, but somehow, being in the registry, I feel a little less helpless.

Candi:  What does a donor have to go through?  
Taylor:  A sample of the registrant's DNA is taken (with a cheek swab) and used to identify a number of Human Leukocyte Antigens (HLA).  The information is stored in the donor database for patient searches.  HLA’s are genetic markers that are inherited from our parents.  A number of antigens have been identified as important when matching donor and patient. Obviously, the closer the match between the patient and donor, the better the outcome will be for the patient. The patient's transplant physician will look first for a compatible donor in the patient's family and will arrange for testing of appropriate relatives. In general, the most likely family members to match will be the siblings. However, chances of finding a compatible donor in the family are less than 30%.  If no suitable relative is found, a request is made to the Stem Cell and Marrow Network to search for a donor throughout the US and Canada as well as all international donor registries.

Candi:  How are bone marrow cells actually collected?
Taylor:  There are two methods.  In the first, called a stimulated peripheral blood stem cell donation, a part of the donor’s circulating blood is taken. To increase the number of stem cells in the blood, the donor receives injections of a drug called a granulocyte colony stimulating factor (G-CSF) every day for four or five days. The stem cells are then collected using a procedure called apheresis where the blood is drawn, the stem cells separated out, and the remaining blood is returned back into the donor’s body. This is a non-surgical procedure.  Apheresis is commonly used in a variety of situations – for example, plasma donors may undergo apheresis up to 52 times a year!  

The second method is a bone marrow stem cell donation.  This is a surgical procedure performed under anesthesia. A syringe and hollow needle is used to withdraw liquid marrow from the back of the donor’s pelvic bones. The procedure usually takes 45-90 minutes and it collects blood along with the stem cells from the bone marrow.

Candi:  When will you donate? 
Taylor:  As soon as I am a match. 

Candi:  How does it make you feel knowing that a call could come at any time, or perhaps never? 
Taylor:  I’ve put it out of my head for now.  I am on the registry, and that’s all that I can do from my end.  If I am called, I will be more than happy to donate. On the flip side, if I am never called, I’ve got to believe that someone didn’t go without the stem cells they needed, but they found a match geographically closer. 

Candi:  How can other people find out about becoming a donor? 
Taylor:  I wasn’t sure where to look, so I Googled “bone marrow donor” and found these two websites, one Canadian and one American, either of which will get you the info that you need on how to become a donor and provide more details on the process of donation.* 
*Candi's note:  Blogger is not behaving itself, so I am not able to add the links for bonemarrow (.org) and onematch (.ca), even as plain text.  I'll add them when I can, and you can use them as search terms in Google.