Date Night

We went to a movie this afternoon!  That may not be remarkable for the average American couple, but it is for us. We haven't been out on a date since June.  That's when Roger left to work in Saudi Arabia.  Shortly after he returned in August we found out the leukemia had relapsed and since then, it's been all work and no play for the Merrills.  We're beginning to understand what it must feel like to be incarcerated.  We have to be really careful to avoid germs, (Roger wore his mask and gloves) but complete isolation can't be healthy either.  We saw the Coen Brother's film True Grit.  It was not too crowded and no one sat near us that was coughing and sneezing.

As we were tottering along, I realized we have become one of those funny little couples, holding hands and watching the world race past us at what seems like breakneck speed.  But, it was fun being out in the world, and who knows?  We might do it again.
--Candi

Shepherd's Pie: Peasant Food for a Cold Night

Roger is not into gourmet meals these days.  So I make comfort food in our little “make do” kitchen.  This is a slightly scaled down version of Shepherd’s Pie.  Ordinarily it makes good leftovers for lunch the next day, but in our circumstance I make a half recipe so there will be less waste.  It's simple peasant food, filling and homey on a brutally cold night like tonight.  It’s not quite as good as the Shepherd’s Pie from Sean Kelly’s in Missoula, but then, nothing is.

Shepherd's Pie

6 medium red potatoes, peeled and cubed

1/2 cup cream or half-and-half

Salt and freshly ground black pepper

1 tablespoon extra-virgin olive oil

1 small package of ground beef (just over a pound)

1 ½ cups frozen mixed vegetables

1 onion, chopped

1 clove of garlic

1 small can sliced mushrooms

2 tablespoons butter

2 tablespoons all-purpose flour

1 cup beef stock or broth

2 teaspoons Worcestershire

1 sprinkle sweet paprika

1 tablespoon chopped fresh parsley leaves

Directions

Boil potatoes in salted water until tender, about 12 minutes. Drain potatoes and pour them into a bowl. Add cream or half and half and butter to potatoes and mash.

While potatoes boil, preheat a large skillet over medium high heat. Add oil to hot pan with beef. Season meat with salt and pepper. Brown and crumble meat for 3 or 4 minutes. Add chopped garlic, mushrooms and onion. 

Sprinkle flour over the brown ground beef mixture and stir it in.  Gradually add in broth and Worcestershire sauce.  

 Heat and stir 1-2 minutes until gravy thickens.

Use the saucepan the potatoes were cooked in to cook the frozen vegetables until tender.  Drain and set aside.

Preheat broiler to high. Layer the bottom of a small rectangular casserole with the each meat, mushroom and gravy mixture.  Spoon the vegetables over the top of the meat.  Add the mashed potatoes as the top layer.  Dot with butter and sprinkle with a little paprika.

Broil 6 to 8 inches from the heat until potatoes are evenly browned (about five minutes).

  Enjoy.

Day Seventy

I see we have incorporated a Gratitude Journal into the blog. Nice idea. It reminds me to publicly thank Candi for all she has done for me. From the very beginning, she has been an extraordinary partner. She stood shoulder to shoulder with me. Her courage has inspired me to face terror without blinking. She works harder than a Bolivian coal miner and her caustic humor never lets me indulge in self-pity for long.

Candi and Sophie taking a break from a do-it-yourself project, 2009

When we first started talking about the transplant I had no idea she would be able to take extended medical leave from the University of Montana. I began to heroically imagine going through the process in Salt Lake City alone with Candi visiting from Missoula only on an irregular basis. Silly me. I see now there is no way a person could go through this alone. There is just too much to do. There were times when I was virtually an invalid, times when I was frail and could hardly remember my own name. My wife was always there looking out for me. I don’t know how to thank someone for saving my life. I can only start by saying thank you Candi.

--Roger

February

It's February and although it's too early by several weeks to declare winter over, it's not to soon to sneak a peak at the garden magazines at the newsstand.  And it's not too soon to declare we have survived another winter. We look forward to new life and a new growing season.  This month Roger and I will take small steps toward the restoration of our life.  We're building strength and adding structure to our days as we prepare for re-entry.  We both have to think about returning to work.

We're beginning to formulate a picture of  what a life after transplant looks like.  Where do we go from here?  So we begin by looking outside ourselves for inspiration.  What do survivors look like?  What do they do?  How do they act?  Tell us survival stories from people that inspire you.  We'll compile a list and post it here in a week or so. 

Until then, we dream and plan.
--Candi

Everything is Relative

Day 68 post-transplant

The barista asks me if I’d like a straw and a few chocolate-covered coffee beans with my drink.  “No thanks, I’m a purist,” I reply, as I shell out 3 bucks and take my tall-single-whole-milk-macchiato in a go cup with a nice cardboard collar to protect my sensitive fingers.  I catch myself in the absurdity as I drive away.  My dad, a black coffee drinker till the day he died, would laugh at my definition of coffee purist.  It’s a relative term.

When I say Roger is doing great, I mean it with all sincerity.  But I see his health and energy level relative to what it was six weeks ago when he was in the hospital.  If you were to see him today, you’d see a thin, bald man, looking a bit the worse for wear.  If you saw him outside our apartment, he would be wearing his HEPA filter mask and gloves.  Because I’ve said he’s doing great, you might be shocked or even disappointed at the way he looks.  Have faith!  He will eventually look like the familiar Roger that we know and love. 

 

He is, in fact, doing great for having had a bone marrow transplant just 68 days ago.  His blood counts are holding steady, he’s gaining a little weight back, he’s getting some exercise every day, he can see well enough to read again, his voice is strong, he doesn’t need to take naps any more.  He feels much better, if still not entirely well.  Things are on the upswing.  I think I may have even spotted a few wisps of hair growing back. 

 

Like my lazy use of the word “purist,” “great” is another relative term that I toss around freely.  But, honestly, after everything we’ve been through, I can’t believe that we’ve come this far.  Great seems pretty good to me.
--Candi

Cranes and Friends

My friend Sue wrote on her Feathers and Flowers blog a few days ago about cranes in Asia and the crane sculpture in her garden.  It reminded me that I had been meaning to post a photo of this quilt piece made by another friend.

Sharon does such fine quilt work, the details are precise and the needlework so tiny that the piece looks more like a painting than a quilt.  Cranes often show up in her work.  She made this wall hanging as a talisman for Roger “for a strong spirit and good health” during his bone marrow transplant journey.

Images of cranes are excellent reminders of wishes for long life, good fortune, peace, support and friendship across time and distance.

Here’s a poem for you both.  Although in this case, the crane is the “yellow crane tower,” a place name and not a direct reference to the bird.  I like the sentiment.

--Candi

Goodbye at Yellow Crane Tower

  

Here's my good old friend
At the Yellow Crane Terrace
For a western departure.
We're saying good-bye.
He's in a cloud of third-month blossoms.
He's off downstream to Yang-Chou.
That shadow is his lonely sail.
Now it is gone.
All the blue is empty now.
All you can see is that long, long river.
It flows to the edge of the sky.

--Li Bai

Lazarus 2.0

Apparently I have risen again. The first time was after completing a years worth of chemo in 2005. If all continues to go well, it appears I may have risen again in 2011 thanks to a successful bone marrow transplant. So Candi and I are beginning to think about the future. 

In March we may find ourselves back in Missoula, reunited with friends and sweet Sophie our dog. So we’re wondering how we might best use this experience. What have we learned that would be worth sharing with others?  We definitely intend to make ourselves available to other cancer patients – most likely through Montana Cancer Specialists – patients facing a transplant who would like to know what to anticipate day by day.

We’re learning about the problems associated with eating when you don’t feel like eating ( how do you minimize weight loss and dehydration?) We both feel more needs to be done to help patients better prepare a workable plan for nutritional success.

We’ve experienced the value of community support and want to encourage it but also feel  more needs to be done in the important area of patient advocacy.

And lastly we would like to contribute to a conversation about managing the seemingly endless flow of incomprehensible paperwork and bills from hospitals, doctors, pathologists and insurance companies that begins piling up almost immediately adding more stress to an already difficult situation. Reform! Yes! How? Not sure.

--Roger

Food For Thought

We're both worn out tonight.  The surgery on that swollen lymph node in Roger's neck came off like clockwork today.  Even though we were not too anxious about it, it's amazing how tired we both are now that it's over.  Perhaps we were feeling a little more stress that we were willing to admit.  Boy, is it great to be in and out of the hospital in a single day!  Our ambition this evening stretches only far enough to make scrambled eggs for dinner and a have good sit-down on the sofa.  We will have to wait for lab results to come in next week to confirm this sense of relief, but the surgeon's first impression says all is well and we're riding that wave.

I sat in an uncomfortable chair in a crowded waiting room for a good portion of the day.  I was not ready to be back in a hospital environment so soon.  In an effort to block out unpleasant sights, sounds and smells, I picked up the latest issue of Vanity Fair magazine and flipped through it.  Rather than juicy bits of celebrity gossip though, I found the results of a "60 Minutes" survey that posed the question "If it were possible to selectively erase the most unpleasant memory of your life, would you do it?"  86% of those surveyed responded "no."

It's not science fiction any more.  Recent developments in neuroscience might soon make it possible to isolate the offending neurons that keep replaying unhappy memories and retrain them.  Our most painful memories could simply fade away.  And yet, 86% of survey respondents said they wouldn't do it.  What if it were possible to not erase the unpleasant memory altogether, but just turn down the volume a bit?

Our memories -- all of them -- make us who we are.  How could I explain my quirky self without intact memories?  I understand that some people have memories painful enough to be utterly debilitating and in those cases, it makes some sense.  For me, even with the fear and grief of the last six months, I think I would choose to keep my memories and have an understanding of the source of my strengths and weaknesses.  It's interesting to think about though.  What would you choose?

--Candi

Looking for the Silver Lining

Finding the silver lining is difficult when you're at the apex of a life and death situation.  Naturally we focus on the more fearful aspects first.  But we can't live long with an out of control racing heart.  Eventually we slow down and then we can choose to shift our point of view.  The ability to shift is important, because holding a positive outlook leads to a longer, healthier and happier life.  I'm not an advocate of falsely proclaiming life to be great when, in truth, it utterly stinks, as it sometimes does.  But there are almost always benefits to be found in a given situation.  It requires making a conscious effort to find them.  Sometimes it takes repeated efforts. 

I've started compiling an impressive list of positives that have come of this leukemia crisis/opportunity and I plan to continue adding to it, although much will take time and perspective to come to the surface.  I don't know if I'll ever be able to share it all.  Many of my positive outcomes are so personal and, despite the blog, I'm a private person by nature.  Perhaps, someday. For now, it's enough to say that having such a list helps me get through bad days.  In the long haul, looking for the silver lining redirects my energy and helps me set a course of action for myself. It reminds me that there is a reason we're going through all this.

And now, for the weekly clinic report, if you're not too bored by good news.  Roger gained back two pounds this week.  Aside from that, he didn't do anything newsworthy.  I think his docs are losing interest in his case.  That's alright.  In this environment, it's good to be boring.
--Candi

Danger and Opportunity: Open to Interpretation

We have two choices in the way we evaluate life-altering change.  You know the old adage about the Chinese symbol for crisis implying both danger and opportunity.  I know, I know, it's pretty well-worn.  But it has worn well because it's true.

When in crisis, it's easy to identify the threat and slip into the all too familiar feelings that accompany it: anxiety, sadness and, ultimately, depression. It's more difficult to identify an opportunity, but the rewards of leaning that direction are sweeter, including an almost electric-charged feeling of challenge, hope and the resulting self-confidence from having met the enemy and having refused to back down.  Would you be willing to learn how to override the tendency to go straight into defense mode if you could?  It bears thinking about.

More on the topic of danger and opportunity later (yes, that's a threat!).  

This is a busy week for us with a clinic appointment (always a half-day adventure), the opthalmologist and then off to get new glasses.  Roger is having day surgery on Thursday for that enlarged lymph node.  You'd think we wouldn't have anything to do but sit around and wait to get well, but healing is not a passive process and we are actively involved every single day.  It's always something.

Stay tuned.