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.

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

Day 49 Clinic Report

Lean and Mean on January 12, 2011

There are no startling improvements or big set backs this week.  Roger lost another pound or so (damn!) but otherwise, he's doing quite well.  His blood counts remain strong.  There is no sign of graft versus host disease. His vision seems to be improving a little and when it seems like it has improved as much as it's going to, he'll get new glasses.

His appetite has been better this past week.  I was betting he hadn't lost any more weight, so I was surprised at that news.  I just don't understand how anybody that eats like that could lose weight!  This diet wouldn't work for the average person trying to lose weight, that's for sure.  Perhaps his metabolism is nutty as his body tries to re-establish a "normal" way of operating.

I would like to know more about the role of nutrition in fighting cancer.  I'm so surprised that they seem to know so very little about it at the Bone Marrow Transplant clinic.  Everyone just shakes their head, as mystified as we are.
 
 All in all, a good clinic report.  We can't complain.

The Original Bone Marrow Boogie

After Candi found me through my Facebook Boogie  page, she invited me to write a bit about my “perspective of healing and surviving cancer after all this time”.  First, since she and I came up with the same title for our cancer adventures, I want to say something about how I came to call my memoir, Bone Marrow Boogie ~ the Dance of a Lifetime. The bone marrow is the juicy part of us, our very essence, where our energy is stored, as well as the birthplace of our blood cells, which made it the ideal metaphor for what I was attempting to convey. While I did not end up needing a bone marrow transplant, I endured the process of having my stem cells collected and stored; during the procedure I focused on picturing them dancing in my marrow as I watched my blood churn and spin.   Additionally, I love to dance, always have, the more impromptu the better. Whether in my kitchen, in line at the grocery store, or on a bona fide dance floor, I am dancing the jig of a lifetime as I contemplate how close I came and how lucky I am.  So it's a title of both acknowledgment and celebration, and in my mind it's crucial to do both.

Some of you probably know of Steven Levine’s work with death & dying.  I credit him for my firmly held belief that I was not responsible for my cancer; I was responsible to it.  The distinction matters, because too many people blame themselves for the diseases that befall them, even if their lives and lifestyles have been exemplary.  I chose to embrace my healing process, in lieu of drowning in self-recrimination.  Thank goodness!

I was diagnosed with acute B-cell lymphoma, on December 23rd, 1998. Now, 12 years later, at age 62, I feel blessed with good health and a whole lot of energy for life, and yet I still feel a bit superstitious proclaiming such good fortune out loud.  Even though the first two years post-diagnosis are the most critical for acute lymphoma, I remained vigilant and, at times, fearful for about eight years.  Anniversaries snuck up on me at a time when most people were celebrating the winter holidays, and I used them as opportunities to renew my pledge to live as consciously and joyfully as possible.

While I am no longer preoccupied with my own treatment and recovery, I am as mindful of life’s fragility as ever.  Two years ago my husband was diagnosed with early stage prostate cancer, and, after undergoing robotic surgery, he too has been given a clean bill of health.  He’s a runner and I’m an exercise freak.  We eat local organic food to the fullest extent possible, and we’ve never exactly been party animals.  Still we both got the BIG C, and had to face our mortality sooner than we’d planned.  While I no longer need to see my oncologist, I continue to work with my naturopath and energy healer, and I credit them as much as myself for my strong immune system.  Every day I touch the Earth and exclaim my wonder and gratitude for this moment, right here right now. It’s all a mystery.

In a recent interview with Maria Altobeli, for her blog, Mexicoinsmallbytes.com, she asked me to offer some tips for people undergoing cancer treatment. I hesitated to give advice, because, in my own experience, everyone’s journey through cancer – whether as a friend, healthcare provider, family member, or patient/survivor – is unique.

At the same time, I wrote Bone Marrow Boogie in part because previous cancer memoirs seemed so discouraging, and I felt I had a different story to tell.  I approached my cancer from both a conventional and complementary perspective, and I was fortunate to have practitioners who not only respected my wishes but respected one another as well. So, if you’re interested in my “to do” list, you can read that interview at Mexicoinsmallbytes.com, or in the back of Boogie.

Boogie is available free as an eBook in PDF format from Kota Press.

Boogie is on Facebook.  You can become a fan there.

There aren't many new copies of Boogie in circulation, but I love the idea of folks continuing to circulate used copies, which you can still buy at Amazon.

Janie Starr
January, 2011

Boogie Too

Early last fall, as we were preparing to begin Roger’s bone marrow transplant, we went searching the internet for information. We had heard from the doctors and scientists, but we wanted to know the personal stories of survivors.  What tips and techniques had they used that might work for us?  Search results were grim.  We found a few blogs on the topic, all focused on fear, powerlessness, and illness.  Decidedly, not helpful.

We had counted Roger as a survivor from the very beginning and it was vitally important that we maintain that confidence.  The scarcity of positive personal stories led me to the decision to write one myself.  A conscious effort to get into a positive frame of mind, as well as the daily discipline of writing and staying connected has been as important to me as it is to friends and family who depend on it for word of Roger’s progress.  I imagined Roger’s fight accompanied by music, the soundtrack of our lives.  At times, it has been a sentimental dip into lyrics that lift us and at times an emotional slide into opera, but most frequently it has been a ballsy and energetic boogie - the Rock and Roll music we grew up with.  Google makes it so easy to establish a blog; it’s possible to set it up and title it on an impulse.  And so, The Bone Marrow Boogie began.

 

In my apprehension about beginning this new phase of our life and my eagerness to do everything right (a silly notion in this upside down world), I failed to do the simple Google search that would have told me the title Bone Marrow Boogie was already in use.  Mortified, I discovered that fact a few weeks later.  I ordered the book online and contacted the author to confess.  Janie Starr generously granted her permission for me to go on using the title. 

 

Janie’s book tells the story of her journey, not through leukemia, but through lymphoma, a decade earlier. She had stepped from good health into a new reality created by disease and took an affirmative and accountable approach to her health.  It is the positive message I’d been searching for and had not found.  Janie has graciously offered to share her perspective now as a survivor.  You’ll see it posted here tomorrow.  It is a small world, indeed.

Boogie on.

How to Cook for Someone That Doesn’t Want to Eat

Picky, Picky, Picky.  That's the name of the game.

In addition to the kitchen cleanliness and food safety issues that I wrote about yesterday, I’ve learned some other lessons about how to cook for someone that doesn’t want to eat, lessons that deal more with emotions than with food per se.  This post might be better titled “Self-Preservation While Caring for Someone Else.”

• Don’t spend hours shopping for groceries and cooking fabulous meals.  You may think you can tempt your loved one into eating.  You can’t.  Working too hard for too long with little thanks will lead to resentment for you and guilt for him and that doesn’t help anybody. 

• If you work too hard preparing a meal, it puts stress on the person that is expected to eat it, making the meal look like a mountain that must be conquered.  If it looks like too much, it’s difficult to even make a start.

• If you’ve prepared food that is not wanted, just remove it.  No harm, no foul. 

• Don’t present your favorite recipe expecting that it will be received as a masterpiece.  Food is not welcome, but don’t take it personally.

• Think of food as medicine.  Offer it regularly, in small portions.

• Variety is important, but if you find a food that works, don’t be afraid to repeat it.  Go with what works.

• Make recipes that come together quickly and that don’t have a lot of expensive ingredients.  You may end up throwing most of it away.  That’s okay – waste is the least of your worries just now.

• Lower your expectations about quantities of food eaten, focus instead on quality.

•  Cook to please yourself if you enjoy cooking.  Take a day off from cooking every now and then if you need it.  Offer simple foods on your day off. 

• Sit down to eat and take the time to enjoy it.  Although the person that you’re caring for may be less than enthusiastic about food, don’t let it spoil your meal, or infringe on your time to eat it.

• Consult with one another.  Listen.  Collaborate.

• Be flexible.

• It bears repeating.  Don't take it personally.

Managing Microbes in the Kitchen

A lovely, fresh salad? Or a stew pot of bacteria?

Taking care of a loved one with a compromised immune system means relearning a lot of things you thought you knew. 

 

Recently I heard that 85% of the bacteria contaminating foods in this country didn’t even exist 25 years ago.  Unless you are able to eat locally grown foods, which is tough to do in winter, almost all your groceries are processed in factory farm storage facilities that serve the entire country.  When bacteria arrive at the warehouse from one contaminated source, they multiply and spread there and are delivered to supermarkets across the country.  We bring bacteria into our homes by the grocery bag full.  And, if we’re not careful, we can compound the problem by growing our own.

 

325,000 Americans are hospitalized each year with food-borne illnesses.*  For the most part, these are people with healthy immune systems.  Those with lowered immunity are less able to fight off bacteria and are at higher risk of developing complications because of it.  Think of the number of food-borne illnesses that must go unreported because they are mild cases or the symptoms are wrongly attributed to an intestinal virus.  Altogether, “food poisoning,” as it used to be called, is a big problem that is growing, in every sense of the word.  We can preclude bacteria from setting up colonies in our kitchens by following some techniques practiced by commercial kitchens and working in tips from the medical world.

You’ve all heard the maxim “Keep it hot, keep it cold, or don’t keep it” with regard to food storage.  But you have to consider not only the food, but everything the food has touched: the cutting board, the paring knife handle (it’s not sufficient to wash the blade) – every tool that you used once and set down to be used again later, the cupboard door knob that you touched with contaminated fingers, the inside of the refrigerator.  If you’re like me and use a dishwasher with a good hot water cycle, your dishes are clean enough, but that means you’re not filling the sink with hot soapy water every day.  You may have a breeding ground there. 

Wash the sinks, sink strainers and faucet handles every time you clean up after preparing food.  At least a few times a week, spray it with a bleach solution and give it an extra careful going over.  Once a day, spray cupboards and drawer pulls with anti-bacterial cleaner. Clean the refrigerator regularly, especially the drawers where you’ve stored unwashed produce.  Needless to say, meat should always be kept in a washable container, not directly on a refrigerator shelf.  Use paper plates in place of a cutting board.  Use paper towels instead of fabric dish cloths and dish towels. 

 

It’s not an environmentally friendly way of living, but it’s safe.  Under the circumstances, it’s what we have to do now.  We’ll do penance for the environment in other ways.

If this blog post has kept you on the edge of your seat, just wait till you see my series on cleaning bathrooms! 

Have you washed your hands???

*According to U.S. News and World Report, December 2010.

The Reader's Digest Condensed Version

The day flew by in a flurry of appointments.  To be perfectly truthful, while we were sitting in various waiting rooms, it felt more like time crawled by at a tortoise's pace.  Suffice to say the day was taken up by other obligations so I didn't have time to compose a nice blog post and find an apt photo and a quote to go with it. But I know some of you have been waiting for the after clinic report, so I'll give you the scaled down version. 

First, the not so great news:  Roger lost another pound.  One pound does not a crisis make, but if he continues to lose weight, this could become a real problem.  This week he needs to maintain his weight or even better, gain a pound.  Also on the not-so-great front, his vision is still very blurry.  It's difficult for him to either read or see at a distance very well.  He can see well enough to watch television, but he can't read.  He can see well enough to walk, but he most certainly can't drive.  We need to figure out if the vision problem is a side effect of medication, which would make it temporary, or if it's a side effect from the transplant, which would make it permanent, or if it's being caused by something else which would make it an unknown.  Hold this thought for us: it's only temporary.

Now the good news and the really good news:  There is still no sign of Host Versus Graft disease.  He is feeling a little stronger each day.  Even though his stomach is in no great shakes, he's tolerant of a wider variety of food with each passing day.  His kidney function has improved, probably due to the quart and a half of IV fluids he gets every night now. And, drum roll, please....all his blood counts: neutrophils, red blood cells and platelets have improved again!

You know Roger is competitive, right?  He always wants to do things just a little bit better than the next guy.  The quote of the day is from his P.A., Andrea Arnold, who says Roger is "miles ahead of most transplant patients at day 42."  That was all the encouragement he needed to make him want to go home and eat something.

Here's Roger!

I've been doing most of the talking on this blog.  You haven't seen Roger in awhile.  Here he is, alive and, if not well, getting there.

Day 41 post-transplant

Breakfast, Lunch, Dinner, Drinks and Dessert

Breakfast.  Roger has eggs and bacon or sausage every morning, plus fresh fruit, juice and about 1/4 cup of various pills.

Lunch - a high calorie protein shake.  If I concoct it just right, I can pack about 700 calories into one of these babies.

Dinner.  Mashed white potatoes and gravy and sweet potatoes seem to go down pretty easily.  He disperses the rest of the food on his plate to make me think he ate it.  I expect next I'll find bits of dinner hidden in his pockets.

Drinks.  Magnesium in a quart and a half of fluid.  Shaken, not stirred.

 

Dessert: more pills

You will no doubt wonder how anyone on a diet like this could lose weight.  Well, Roger doesn't really eat much.  Mostly, he pushes it around on his plate.  His taste buds don't work properly.  He's bothered by the texture of foods and he's not motivated to work at it. He's been nauseous for the last month, although fortunately, that finally seems to be abating.  He is rarely hungry.  He feels full before he even starts to eat. Foods that slip down easily without a lot of chewing work best.  I'll prepare anything he asks for, and I always add a few other things to his plate, figuring if it's there, he might just take a bite.  You won't see a salad on this low microbial diet.  It scares me to think I could not wash greens well enough to make them safe.  It's not worth the risk.  Anyway, why waste the effort of chewing on something that has no calories?

Healing from a transplant is such an unusual circumstance.  Maybe he needs more calories than normal to fuel healing his body at the molecular level.  On Wednesday we'll go for a clinic appointment and we'll find out if he's lost more weight.  If so, I could make a fortune on the internet selling this as a weight loss diet.

The Art of Healing

Today I went out on a nerve-jangling errand to a busy Walmart. Never go on a Sunday. For a happier life, never go there at all. 

I had to take down the Christmas decorations. I just had to. I can't live with Christmas decorations after New Years. Now the walls in our little apartment are stark-raving bare. So I picked up some cheap picture frames with the idea that an art project will kill two birds with one stone. It will give Roger something to think about and it will break up the austerity of these white walls. More on the art later, if he turns out something worthy of a photo.  ;-)

Roger's perspective on life is rather limited. Because he doesn't have energy or immunity, he doesn't go out except for short walks and, of course, to his clinic appointments. He still can't read because his vision is blurry. Of course we have our audio books and television, but that gets old, believe me.

He is disappointed that his energy doesn't increase perceptibly from one day to the next. That's normal for this stage of the game, but he's impatient. He wants to see more improvement faster. 

He went for a 30 minute walk today. That doesn't sound like much, but it's better than he could do a week ago. He grouses and says "it's more like a 30-minute shuffle." His impatience is a sign that he's getting better.  But, oh, what a long road still lies ahead!

I hope he builds up the steam to make a little piece of art or two this week. We need it!