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.”