Resilience and Creativity

Elizabeth Edwards, 1949 - 2010

 When Elizabeth Edwards died in December, NPR dredged up an old interview from a few years ago that they had on file, as they so often do.  I listened in the car while driving across Salt Lake City after spending a long day with Roger in the hospital.  The interviewer asked her something like "how do you so gracefully deal with cancer in your life?"  The way the question was worded, it sounded as if cancer were a gift and Edwards had an innate talent for making the best use of it.

Her response struck a chord in me, though I'll have to summarize.  In essence, she said, when a bad thing happens, whether it is a catastrophic weather event, a divorce, a car accident, or an illness, it changes your life completely.  It erases everything you had planned to do.  It wipes out the way you had intended to live your life and it replaces your options with less attractive ones.

You can make the choice to hold on to your past, which renders you impotent because you can not change it, or you can live in the present and have some measure of control.

We all have to spend some time hanging on to what we held dear, that's the nature of grief, but don't allow yourself to stay there for too long.  The sooner you can step into your new reality, and the sooner you can begin to make decisions and take action, the more effective you will be.  

Coping doesn't come naturally to some people and not to others.  It's a skill that can be learned.

Our lives were turned upside down six years ago when Roger was first diagnosed with leukemia and again six months ago when we found out he was no longer in remission.  The best advice I can give after this experience is to echo Elizabeth Edwards words and add this thought of my own:  Don't wait until tragedy strikes to learn how to become the decision maker in your own life.  Start training now.  Rather than living your life reacting to events, take charge and take the actions that will get you the best outcomes possible, whatever your circumstances.  Create your own life as you go.  It's good practice.
--Candi

New Paintings

I thought I would offer up some recent paintings and let them be my voice. Because of our situation - a temporary life here in a small apartment Salt Lake City - I’ve begun working with watercolors and in a smaller scale.   (16" x 20")

 Back in the late ‘80s I did some adventuring on the Amazon River. That experience has inspired a number of artistic explorations over the years.

 

I’ve turned again to this theme because it awakens in me a sense of life and mystery. It reminds me to take risks and be spontaneous.

These are a few of my most recent efforts.

Abundant Life!

I hope you enjoy the work.

Roger

The Best Black Bean Soup

I've experimented with a lot of recipes for black bean soup over the years and I've improvised some variations of my own.  There's nothing quite like the flavor of black beans and they're high in protein and satisfying.  This soup comes together quickly and then takes a couple of hours to simmer.  It really sparks your appetite as it fills the kitchen with a warm, smoky aroma.  When dinner time finally rolls around, you'll be hungry.  Add some fresh toppings and a corn tostada or flour tortilla on the side.

First, the beans:

Add a classic mirepoix:

Some broth and spices:

And finally, the fresh toppings:

Here's the recipe:

1 pound dried black beans, rinse and picked over
4 ounces ham
2 bay leaves
5 cups water
---
3 tablespoons olive oil
2 onions, chopped fine
1 carrot, chopped fine
3 ribs of celery, chopped fine
1/2 teasp salt
5-6 cloves garlic
1/2 teasp red pepper flakes
1 1/2 tablespoons cumin
6 cups chicken broth
3 tablespoons cornstarch
3 tablespoons water
2 tablespoons fresh lime juice
---

Garnish with any fresh toppings that you like.  Here are some ideas:

• fresh lime wedges
• fresh cilantro leaves, minced
• red onion, or green onion finely diced
• avocado, diced
• green pepper, finely minced
• sour cream
• red salsa
• fresh finely diced jalapeno (if you're brave)

---
And, on the side:
Fresh soft flour or crispy corn tortillas.
Another squeeze of fresh lime juice

1.  Place diced ham, beans, and bay leaves into a large saucepan with a tight fitting lid.  (I love my all-purpose dutch oven for this.)  Bring to a boil.  Turn down the heat, cover and simmer for 90 minutes.  Note: beans should be tender at this point.  If not, add a little more water and continue simmering a few more minutes. Don't ever let beans go dry while they're cooking.

2.  Heat the olive oil in a skillet.  Add onions, carrot, celery and salt.  Cook, stirring occasionally, until vegetables are soft and just starting to brown.  Reduce the heat and add garlic, pepper flakes and cumin.  Continue cooking until fragrant, about 3 minutes.  

3. Add the vegetable trio (mirepoix) and garlic to the pot with the beans and ham.  Add the chicken broth and simmer, uncovered, for about 30 minutes.  Stir occasionally.

4. Ladle a couple of cups of the soup into a blender and blend till smooth.  Add it back to the pot.  Stir together the cornstarch and water and add that to the pot..  Return the soup to a boil for just a minute to thicken it. If it's not thick enough, repeat the cornstarch trick.  Add salt to taste.

5.  Remove the soup from the heat and add the lime juice.

6.  Serve hot and let everyone add their own toppings.

Yummy!

Add a fresh sliced mango for dessert and you've got something.  Roger eats it up.
Candi

Day 57 Clinic Report

I can hardly keep the feeder outside our window stocked.  The little guys eat more than Roger does!

Finally, it seems we've turned the corner on the weight loss.  I'm happy to report 1/3 of a pound weight gain!

Roger's diet includes enough variety now that I am less inclined to worry about his nutritional needs.  He still finds many foods unappealing, so cooking for him is a pain in the neck.  I spend several hours a day in pursuit of edibles.  We experiment with different foods and we end up throwing out a lot of uneaten leftovers.  Every day, though, we get better at figuring out what he can tolerate and he is more able to tolerate more foods.

He still relies on magnesium delivered via IV, along with 1500 mls of water every day.  He can't eat enough and drink enough to sustain himself, so it was always a tough choice to make.  The IV fluids will keep him hydrated until he can do both.  Now that we've broadened our minds to the idea of having an IV pole in our living room, and we've mastered the cursed thing, it's a strategy that works. We've been told this lovely item is ours to keep -- as a consolation prize for this misadventure?  Imagine how thrilled I was to hear that.  An IV pole of our very own!  Perhaps when he's finishing with it, we can add an umbrella to the top and use it as a portable shade tree for the summer months.

Roger's blood counts remain strong and his energy is increasing daily.  He's able to help out with small household chores a bit now.  He unloads the dishwasher and folds laundry and sometimes even helps bring in groceries from the car.  Although I still make him carry his cell phone when he goes out for a walk, I don't worry too much. He walks with a more confident step and is able to walk for 30-40 minutes before needing a rest.  His vision is gradually clearing.  Although it may not come all the way back to the excellent vision he had before the transplant, corrective lenses should solve any lasting problems.  He still naps occasionally, but is not prone to doze off many times a day as he was just two weeks ago.

Although I feel more confident when I'm out running an errand that he'll be okay for an hour or so until I can get home again, I would not leave him on his own for an entire day. But I can see it in our future.  The day will surely come when I realize I don't need to be with him 24/7.

Roger is happy about his increased energy, certainly, but he's disappointed that his hair doesn't show any signs of growing back!  I tell him that his body is smarter than he is.  It prioritizes how to spend it's limited energy.  Hair is low on the list, as it's optional and purely decorative.

Despite all the good news, the medical appointments are on the increase.  Roger has developed a growth on a lymph node in his neck.  It could be any one of a dozen things, so we're not wasting much energy speculating about what caused it just now.  Whatever it is, it will need to be surgically removed.  So we're busy seeing other specialists, having CT scans and who knows what all.

You can NOT believe how many times I've filled out essentially the same forms and answered all the same questions.  Even though the specialists are within the same system, they don't seem to share information.

My complaining is purely recreational.  When I can relax enough to use the words "Roger" and "pain in the neck" in the same sentence, you know things are going pretty well.  Life slowly, ever so slowly, returns to normal.

--Candi

On Fear and Worry

It’s amazing that human beings can suffer “the slings and arrows of outrageous fortune” without being in a constant state of depression and anxiety.  We do it with creative denial* and the knowledge that a life lived in fear is not worth living.  When we worry we anticipate a fearful situation, but we fail to anticipate the mitigating circumstances surrounding it.  We can’t imagine how we will be able to deal with a bad situation.  And yet, when the time comes, we usually do cope. 

A few days ago, I was bogged down in worry about how I would be able to take care of Roger after I return to work.  Already circumstances are beginning to change.  Roger’s energy and clarity of mind are increasing daily.  By the time we return to Missoula he’ll be able to take care of himself, certainly for the 8 hours a day that I need to be at work, at least.

Human beings are remarkably resilient.  When our worst fears do come to pass, we see that they are not as bad as we projected, circumstances have changed so that we have the means to deal with the situation, we learn how to suppress the fear and do what must be done, or, when all else fails, we rationalize it by saying “now that the worst has happened, things can only get better.”

That we waste too much energy spinning our wheels in worry is an easy thing to say.  Of course, it’s one thing to know that on an intellectual level and quite another to change your behavior.  I have enough real threats to deal with without making things up!  So my plan of action will be to focus my energy on the real problems and stop doing battle with the imaginary ones.

Wish me luck.

Here's another photo from our neighborhood walk yesterday.

And, something to ponder.  Prayer: is it just another way of worrying?  Or is it a way of letting go of worry?


*Creative denial = “I admit this bad thing is happening to me, but I deny that it has the power to destroy me.”

Gentle Solidarity

Wall mural on the side of the little neighborhood market, Quetzal Imports

Each day, rain or shine, I walk through our neighborhood. Tucked away close to the freeway on the west side of Salt Lake, this small, diverse community is populated primarily by people of color. When I was a kid growing up in Salt Lake City, we thought of this part of town as a rough place on the wrong side of the tracks.

When I first moved here after being released from the hospital I was walking outside once a day.  It was more of a stagger than a walk. Now I’m walking twice a day, sometimes more. Clearly I am growing stronger.

Today, as I was shuffling down the sidewalk with my hands and head covered and my face mask filtering out the pollutants, it occurred to me that the people I have been running into each day out on the streets have been unusually friendly - always offering up eye contact and a nod of the head, sometimes adding a grunt, sometimes a muffled “hey brother”, but always a cordial acknowledgement, a kind of gentle solidarity.

I think they see a man fighting to regain his health. I don’t seem to frighten them. They don’t look away.

I have begun to accept these small gestures as gentle encouragement from people who understand struggle.

--Roger

The Long Stretch

We’ve come through the most critical part of Roger’s bone marrow transplant.  The adrenaline that carried us through those first few weeks is spent.  We’re in the long stretch now.  Continued steady progress makes us less attention-worthy and therefore, more isolated.  

Now that we are beyond survival mode, we lift our heads and look to the future.  I guess this is what it’s like to survive a tornado.  We’re alive, but our world is fractured.  We must pick up and go forward. We will begin the reconstruction slowly, step by step.   

Our first act is to renegotiate the deal.  You’ll forgive me if this is not particularly funny.  I think my sense of humor will return in time too.  In the mean time, at least we can laugh at ourselves.

Watch our movie: Roger and Candi Bargain with the Universe.

Back in the Land of the Living

Roger, Summer 2010

 I was in the hospital for about 5 weeks. And beginning almost immediately I started taking an assortment of drugs. No need for details except to say they may have been useful but they certainly were not fun. They produced a foggy, undisciplined mind that wandered day and night. So where did my mind go? The short answer, I relived my life. And not just vague glimpses, these were vivid images drawn in exquisite detail from a lifetime of memories. 

 

People, jungles, rivers and doorways. All manner of things came and went and some led elsewhere. In a way, I was helpless. I was floating in a stream. Awakened every 2 hours for checkups and medications, I could never gain equilibrium, never fully restore my senses. And so I would close my eyes, drift back and touch my beautiful lived life. This went on week after week after week.

I learned that the human brain is remarkable beyond knowing. I learned the significance of my life is beyond measuring. And I learned that I very much want to go on living.

Roger

 

Beware the Rip Tide

I spent a long time this afternoon writing about things that cause me anxiety. In the end, it was too grim to post and I threw it out. Now that I’ve got it out of my system (mostly), let’s just say we are not always the positive, strong, inspirational people we’d like to be.  Panic is dangerous water.  Today, I fell in and went right to the bottom.

Tomorrow will be another day. We will learn to cope with problems we fear today.

• What will the bone marrow biopsy at the 100 Day milestone show?
• When we return to Missoula, how will I be able to work full-time and continue to take care of Roger?
• What if I get sick? 
• How will we be able to pay our bills?
• How will we be able to manage this deluge of paperwork?
• How do I control the urge to panic that washes over me every day?

 I must make a mental note: I can't swim - yet.

A Note from Roger

Roger's latest painting, January 2011

I want to let everyone know how very much Candi and I appreciate the friendship and support that has come our way these past few months. The books and music, gifts, cards and emails, the expressions of love and concern have been a source of strength. We have not been able to respond to each and every one the way we would have liked, so we want to thank you now.  We have not felt alone and that has made a real difference. Thank you from the bottom of my heart.

My mind is just now beginning to clear after weeks of drug-induced fog. I will be writing more in the next few days. 

--Roger