Alone

Dulac's illustration of the poem Alone

Alone

From childhood's hour I have not been

As others were; I have not seen

As others saw; I could not bring

My passions from a common spring.

From the same source I have not taken

My sorrow; I could not awaken

My heart to joy at the same tone;

And all I loved, I loved alone.

Then- in my childhood, in the dawn

Of a most stormy life- was drawn

From every depth of good and ill

The mystery which binds me still:

From the torrent, or the fountain,

From the red cliff of the mountain,

From the sun that round me rolled

In its autumn tint of gold,

From the lightning in the sky

As it passed me flying by,

From the thunder and the storm,

And the cloud that took the form

(When the rest of Heaven was blue)

Of a demon in my view. 

--Edgar Allan Poe

Edgar Allan Poe was depressed and probably an alcoholic and drug addict; not someone I look to for tips on how to live a happier life.  But I do like Edmund Dulac’s illustration of Poe's poem, Alone.  I can identify with that small person facing a big threat and struggling to keep control of his fear.

Six years ago leukemia came raging into our lives like a storm.  Six months ago it doubled back and we were caught in its path a second time.  In its wake, the storm left broken hope for eternal remission, financial ruin, weakened bodies, a sure knowledge that the future will be very different from what we had imagined, and an insecurity about our ability to face it.  How we do pick ourselves up and go on?  Roger and I are not heroic by any means, but we will go on, because we have to. 

About ten days ago, I asked our blog readers to send their descriptions of what a survivor looks like.  Tomorrow, I’ll share those observations.  You might be surprised to see some of your own qualities on the list.  We're all in this life alone, and we're in it together.  Hope springs eternal.

--Candi

Day 85 Clinic Report

February 17 - Salt Lake City has plunged back into winter

Candi and I just returned from the hospital. Today was my weekly, 2 hour checkup where they draw blood, monitor my blood pressure and temperature, oxygen levels and of course weight. They adjust my drug levels, inquire about symptoms and berate me for not drinking enough water. Today’s report was good, nothing out of the ordinary. The Physicians Assistant was new to us. His name is Steve and he is from Helena, Montana, so we got to talk about home. The bulk of the conversation however again centered on potential threats to my health. I’ve got to continue using the mask, particularly when the wind is blowing or when I’m in a crowd. He told a few frightening stories about how fast and devastating an infection can be for someone with a suppressed immune system. He emphasized the necessity of avoiding exposure to the sun and described how rashes and changes in skin tone can be early indicators of graph versus host disease, and that a sunburn can also trigger the disease. I think they are trying to prepare us for the long term nature of this recovery. I will likely be on some drugs for more than a year. I’m just beginning to get it.  Candi did a quick calculation and told me I wouldn't be doing any gardening until 2012.  It will be quite awhile yet before life returns to normal.  

--Roger

No News From the Merrills is Good News

We are doing our best to not be newsworthy.  Roger has a clinic appointment tomorrow, so we'll post our weekly health update then.   For now we are laying low.  He's been making art.  He's completed a dozen or so watercolors over the last month and has a few more in progress.

Work in progress

Roger's been forced by circumstances to work in a smaller scale and I, for one, couldn't be happier about it.  They are as beautiful as his gigantic paintings, and have that depth of color that makes them appear to change with the changing light throughout the day.  But these small watercolors have a more pedestrian feature that makes them more practical:  An average-sized home can accommodate them.  I know.  I'm ignorant when it comes to art.  What do I know?  ;-)
--Candi

Siberia

Turkey White Bean Chili

Here's another recipe for beans.  Honestly, we do eat other things, but bean soup is low in fat, high in protein and tastes good and, more importantly, it is one thing Roger can eat reliably even if his stomach is feeling sensitive, so it’s on our menu pretty frequently these days.  We make all types of beans and really enjoy the varieties for their unique flavors and textures.  I’ve been working to perfect some old recipes this winter.  My Turkey White Bean Chili is one that’s good enough to share.

If you use dry beans, start them simmering at breakfast time so they’ll be done in time for dinner.  For a quick soup, you can substitute 3 15-oz cans of white beans.  Personally, I don’t think canned beans have the same flavor, but they’ll do if you’re in a hurry.  Aside from cooking the beans, this soup comes together quickly.

We like to make a tropical fruit salad to go with this chili.  Fresh sliced mango, oranges and watermelon offset the heat of the chili nicely.

Turkey White Bean Chili

1 cup dry white beans

2 15-oz cans chicken broth

1 4-oz can diced fire roasted green chilis

½ cup + green tomatillo salsa (at the end of cooking, add more salsa to taste)

1 small package ground turkey (about ½ - ¾ lb.)

6 green onions

½ teasp cumin

½ teasp garlic powder

1/8 teasp crushed red pepper flakes

Toppings:

Fresh avocado, sliced

Fresh cilantro, chopped

Rinse the beans and pick out those that don’t look appealing.  Put them in your soup pot and cover with plenty of water.  Bring to a boil and then reduce to a simmer.  Cover the pot, turn the burner to low and let them simmer for 5-6 hours.  The only thing you have to do all day is check once in awhile to make sure they don’t boil dry.  It’s better to start with too much water; you’ll drain it off later anyway.  (It's okay to run errands while the beans cook as long as you're sure there is plenty of water in the pot.)

About 30 minutes before dinner time, assemble the soup ingredients.  Sauté the chopped green onion and ground turkey together in a large skillet.  Add a little of the chicken broth to the turkey to help break it up.  When the turkey’s cooked through, add the canned green chilis, ½ cup tomatillo salsa, the cumin, garlic powder and red pepper flakes.

Drain the beans and return them to the soup pot.  Add the chicken broth and the ingredients from the skillet.  Heat through.  Taste, and add more tomatillo salsa to taste.

When ready to serve, add the avocado and the cilantro to the top of each soup bowl.

--Candi

P.S.  I have a recipe for pinto beans that I know you'd love.  And there's Julie's Curried Lentils of course.  How much time have we got?

Beautiful and Funny

Happy Valentines Day!

Our daughter Taylor and son-in-law Rod sent these beautiful tulips for Valentine's Day.  Of course, the rules say Roger can't have flowers or plants because of potential contamination from mold, spores, and pollen. But they are too beautiful to give up and they work like a tonic on our spring fever.  So I put them outside on the patio just on the other side of the glass door.  Not only can we see them, they are on center stage.  It's a shame my camera can't capture the sunlight coming through the red vase. It acts like a prism and fractures the light so that it glitters and glows.

Roger shows off his new eyebrows

Roger's eyebrows have grown back.  We're not sure when that happened.   They just suddenly appeared today.  We're hoping some hair appears on his head tomorrow.  He's a serious goof ball.

In Fine Form

I sometimes run aground on self-pity, particularly on those occasions when it seems there is no way past it but to go through it.  But it's not a destination.  Self-pity is dangerous in the long run.  For the last couple of days I wallowed in it.  Now it's time to put it behind me and head for safer waters.

First, it's important to remember that the Bone Marrow Transplant Clinic's reluctance to release Roger is not due to any change for the worse in his condition.  He continues to improve, slowly and steadily and, for that, we are grateful.  The disappointment that we felt was caused solely by us, by an unrealistic expectation we created in our own minds that he would be discharged on a particular date.  Being told he's not ready to go home is perhaps a smack upside the head as a reminder that we must still be cautious.  Roger is not safe yet.  Okay, message received.

The second thing to note is this.  We are fighting for our life here, not just for survival, but a life that is independent and unrestricted. We will go along with the rules as far as needed to get Roger healthy and keep him safe.  When the rules serve only bureaucracy, that's another matter.  There's still some fight in us yet.
--Candi

Speechless

I never know if anyone reads this blog, aside from a handful who comment regularly, but it doesn’t really matter.  I’m positive that one more voice calling out from the vast internet sea doesn’t contribute to the world’s store of knowledge at all.  At the bottom line, writing it is a benefit to me, and to a lesser degree, to Roger.  The discipline of writing every day has added structure to my days, forced me to examine my feelings about it all and get to the truth of who I am.  Blogging has been an important outlet during a stressful time. 

I try to stay positive and do the work that needs to be done, but I’m not perfect by any means.  I get tired, impatient, and bored.  I feel sorry for myself as if leukemia was my burden alone and not Roger’s.  I have unexplained bad moods.  I berate myself for lacking the focus to concentrate for more than ten minutes on anything.  That’s cruel, but human.  I’ll bet if truth were told, we’d find we all criticize ourselves more harshly than we deserve. 

Yesterday the blog didn’t get updated.  I was so bummed, I couldn’t bring myself to write anything.  If you have been following our story, you know Roger is progressing well.  He’s feeling stronger and is getting antsy to go home.  He so wants to start packing boxes.  But it’s too soon, too soon.

Roger had his clinic appointment yesterday.  In a most charming tone of voice, the doc asked what we’d been doing.  Not realizing that was a trick question, we stepped right into the trap and told him we’d been to the movies.  Perhaps chastised is too strong a word, but we were subjected to a lecture on the foolishness of risking Roger’s health for the sake of seeing a movie.  Our hopes for living out our remaining weeks in Salt Lake City in a semi-normal way were dashed.  We were reminded that this is the most dangerous time in Roger’s recovery.  Because he feels well enough to be up and about, the temptation to go places, do things, interact with people, and generally act as if life is normal puts him at risk.  As long as he is taking immunosuppressant drugs Roger has to resist the urge to have a normal life. 

As if that wasn’t bad enough, the BMT clinic will not make any promises as to when he’ll be released to go back to Montana.  They’ll begin doing the follow-up tests on March 4^th, but they won’t talk about release until all the tests are completed and the results are in.  That could take an additional two weeks.  And then they’ll only release him if all the results are positive, and on the condition that he return to Salt Lake City once a week for an indefinite period of time for clinic appointments. 

Once a week???  You have got to be kidding me.  It’s a 9-hour drive between Salt Lake City and Missoula, how can it be possible to do that once a week?  You can understand why I was speechless yesterday.

A few weeks ago we joked about renegotiating our deal with the universe.  Survival is not enough.  The negotiations are open and as soon as I see that some concessions have been made, I'll be in a better mood.
--Candi

Detour

Life rarely proceeds in an orderly fashion.  It lurches forward and stubs its toe in the dark, hops, skips, howls and bumps forward again.

This past two weeks Roger's progress seemed to be sidetracked.  That growth on a lymph node in his neck had everyone mystified.  We were told it was not cancer, but it might be cancer.  It's not, but it could be.  It is cancer, but not a bad kind.  It's benign, definitely benign, at least for the time being.  We've seen the transplant team, the surgeon, an Ear, Nose and Throat specialist, and the transplant team again.  It seemed like every expert wanted to stall and defer to someone else.  The only thing they could agree on was that the mysterious lump should not have been there.

At this point in time, we are still unclear on exactly what it is, or what it was, but it seems to be benign.  Enough's enough; we're getting bored with it.  All waiting rooms look alike.  We're bored with reading the same magazines, filling out the same forms, answering the same questions and making what seems like the same phone calls.

It's really all okay.  When your mind is left idling over a situation long enough, it will go over the same crazy-making ground until it finally gets bored and moves on. Boredom is a sanity saving strategy.  We've moved on, and that beats the heck out of anxiety.
--Candi

There's No Place Like Home

It’s time to start planning to go home. March 4th will mark the 100th day since the transplant and according to medical protocols I can leave the protection of the hospital and head home to Missoula, Montana then. Candi and I both woke up this morning feeling homesick. We began sharing ideas about what was ahead when we suddenly realized there is much to do if we are indeed going to extricate ourselves in a little over 3 weeks. We have acquired a lot of stuff. In fact, we’re thinking of making two trips; the first a brief visit to deliver a car load of our belongings (but mostly for fun), and the real homecoming occurring as soon as we can get out of here with the 100-day blessing of the transplant team.

We're really looking forward to getting home and getting on with our lives.

--Roger

Imagine a World Without Cancer

Today is World Cancer Day. 

The Livestrong Foundation works to reduce the stigma associated with cancer, improve access to treatment and prevent unnecessary suffering from cancer. Today they offer a "World Cancer Day Quiz" on their website to help us understand the scope of the problem that will touch so many of our lives.

The facts and figures are nothing short of astounding, but I find question number 4 to be particularly disturbing.  Roger and I sometimes feel isolated and alone here in Salt Lake City.  And we are very lucky; we have each other; we have our blog, email, cell phones. . . we have an excellent support system, a world class medical team, great friends and family that keep us bound to our real world.  I hate the thought of anyone facing cancer alone.  Imagine a better way.  We have to start somewhere.

Take the World Cancer Day Quiz