You Might be Drowning in Plain Sight

Drowning and Caregiving

Sometimes caregivers are drowning in plain sight!

Drowning victims and caregivers share more than one might think. In this five-part series we explore the phenomena of “Drowning in Plain Sight.”

As you read, whether you’re a caregiver or someone who loves a caregiver, think about the people in your ‘pool’–is anyone drowning?

“Except in rare circumstances, drowning people are physiologically unable to call out for help. The respiratory system was designed for breathing. Speech is the secondary or overlaid function. Breathing must be fulfilled before speech occurs.” Characteristics of the Instinctive Drowning Response–On Scene, The Journal of U.S. Coast Guard Search and Rescue

The doctor adjusted his stethoscope on my back and told me to take a deep breath. I breathed in, and sat, not paying much attention to what was happening. The stethoscope didn’t move. “Again,” he ordered softly.

I let out the air I’d been holding and took another breath while my mind skipped to what I needed to grab from the store before I headed home from this appointment.
The stethoscope still had not journeyed to a new spot.

“Carol,” he reprimanded, “take a de-e-e-p breath!”

I reached deep and breathed properly. This I could do. My life might be falling apart and things running out of control, but I could breathe deep. I’m a flute player. My flute teacher used to make me practice breathing and taught me how to breathe deeply from the abdomen. I drew a deep breath and found that my air seemed to have nowhere to go.

I pretended to myself that all was normal and waited for the stethoscope to go to the next spot.

The stethoscope dropped while the doctor felt along my back.

What was the deal? He’d only listened to my breaths at the top of my back, that wasn’t normal, was it? Oh really. Who cares? I wonder if I mixed Andrew’s nasty medicine with chocolate pudding, would that help him get it down? Swallowing posed the problems…pudding is soft, maybe he could get it down that way. Oh, and besides the pudding, I should get some shaving cream. Karina needed to study her spelling words and writing in shaving cream is a fun way. Yeah, and my grades are due next week, so while she’s practicing spelling, I should get those tests graded. Man, I wish this headache would go away.

“Have you ever had asthma?” the question came out of nowhere.

“Asthma?” Was he kidding? “No, I’ve never had asthma. My breathing is fine—I’ve never had any problem.”

Silence.

“Why, is there a problem?” I finally thought to ask.

“Well, Carol. If you don’t have asthma…then…you’re not breathing.”

I laughed out loud. “I assure you I’m breathing. I’m alive.”

He smiled kindly and explained to me that the muscles in my back felt like the slightly atrophied muscles of an asthmatic patient; showing signs of not breathing deeply enough. I sighed and the very act of doing so proved to me that this doctor was way off.
Not breathing – who ever heard of that. Of COURSE I was breathing.

One has to breathe to live.

The beautiful water belies the silent drama…

He explained more fully that while he was listening, I took a decent breath, but then half the time forgot to let it back out. I needed to practice breathing by taking in big breaths, holding it to the count of three and blowing it – hard – all the way out. Then push even more out if I could. I was holding too much in.

Brother! I’m holding too much in, all right, but it’s not air. It’s panic, it’s fear, it’s responsibilities, it’s life.

But breaths? I was doing fine!

I left the doctor’s office slightly miffed that I hadn’t gone in for breathing issues at all, yet he’d spent valuable time obsessing about my breathing.  Frankly, the doctor had scared me a little bit with his pronouncement about my back. This was the same doctor who kept telling me I needed to get some help; to stop carrying things on my own and to allow people to give me some relief. The same doctor who had, just the week before, reminded me that in order to keep caring for my leukemic boy I would need to eat a little better, drink more water and maybe begin exercising.

Again I snorted with disgust. Like I have time to exercise and eat better…I’d like to see him get up at 3 to get to chemo and return home after dark and still get Larissa to her club meeting and read with Karina and get papers graded. Drink more water? That’d be great, but who has time to count drinks and really, I’d just have to use the bathroom more often. But yeah…we all know those health rules and just as soon as I could, I would follow them like I used to do.

All the way along the one-hour highway route my mind berated that silly doctor who could never just treat what I was asking for, but continually reminded me of taking care of not just my sick boy, but me. My thoughts bounced around wildly like they had come into the habit of doing, and I drove steadily onward. Suddenly breath gusted out of my mouth as dizziness hit.

Whoa. That was weird. I think maybe I was holding my breath while I was thinking!

No, one doesn’t just hold a breath – no one thinks about breathing, they just do it and it works! It’s natural! I continued homeward, thoughts flying in a different direction. Out of nowhere another breath blew out. Oh my goodness, my shoulders are up and I had been holding my breath!

Catching myself holding my breath three more times on the way home convinced me that, indeed, my life had become so crazy that I was now holding my breath, along with my shoulders and my fears, in an effort to accomplish more than I could handle.
I had quit reaching out to friends, feeling that I didn’t have time.
All the things I most enjoyed doing I had given up in an effort to help my kids be “normal”.
I had quit walking in the morning, using that time to get a head start to my day.
I was no longer doing all the things to take care of myself, in order to care for my family.

And I was no longer breathing. 

Have you ever found yourself ‘not breathing’ and unable to communicate with others about your inability to breathe?

The series continues with Breathing Lessons.

Have you ever found yourself not breathing? #blessedbutstressed #caregiver Click To Tweet

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Caregiving Sorrow Turned Into Joy

God can take a caregiving nightmare into pure joy. It's all in the focus.

God can take a caregiving nightmare into pure joy. It’s all in the focus.

Today I join Kate Motaung and the writers at Five Minute Friday and the prompt is:  Joy.

The first few moments after the doctor said the word “Leukemia” I was frozen, until I bolted for the bathroom and lost my stomach into the sink and stared at myself in the mirror, took a deep breath, squared my shoulders and went back to my family.

  • Shock.  I thought he had the flu.
  • Terror.  Don’t people die from Leukemia?
  • Numbness.  What does this mean?

The first few hours after diagnosis were a whirlwind of getting Andrew up to a bigger hospital, finding a place for the girls and preparing for the fight of my son’s life.

  •  Panic.  I don’t know how to deal with this!
  • Disbelief.  This is something that happens to “those people”.  You know, the people on the prayer chain!
  • Alarm.  What was going to happen to our family?

The first few days in the hospital, my eyes leaked almost constantly.

  • Fear.   Was I going to lose my son?
  • Sympathy.  There was not one.easy.proceedure.  They all hurt.
  • Anxiety.  Could we do this?

The first few weeks in the hospital were filled with tests and transfusions, medications and vomit, and a weird combination of silence and bustle.

  •  Agony.  EVERYTHING was hurting my boy.
  •  Loneliness.  The world was doing its thing, and we were in a small room fighting for life.
  • Worry.  How do we keep our girls moving forward with a “normal life” and still be here for our son?  How do we keep our jobs and live in the world of chemotherapy?  How were we going to PAY for all this?

The first few months involved so many miles of driving the four-hour trip to the hospital, my husband and I trading back and forth between home and hospital stays, an acquaintance with medication and procedures and our new life.

  • Resignation.  It was all real.  It was happening, and we had no choice but to deal with it.
  • Angst.  It was all real.  This was going to continue for a while and it was going to keep hurting and it was going to keep interrupting our family and changing our lives and, we STILL did not know if our boy was going to make it.
  • Fatigue.  It was all real.  It was everlasting and time flew by.  There was not a day that was easy nor a night uninterrupted.  Sleep was a distant memory and food did not settle nicely into the stomach – not my boy’s, not mine.

The first few years we had a routine that was comforting (there was always a sense of belonging when we returned to the safety of the cancer ward and the treatment room.)  Andrew knew the nurses and doctors by name and they ALWAYS took good care of us.

  • Reality.  This was it.  This is what we had and it was our job to deal with it.
  • Uncertainty.  The feelings of fear and anxiety NEVER left.  Their constant presence was a load that I fought with in order to be a woman of faith.  I KNOW God holds our future, but could I deal with what the future held?
  • What ifs.  Those what if thoughts hounded me constantly.

Yes.  Our world was flooded with things we never asked for, were sure we couldn’t handle and the pain that stabbed ME every time my son was stabbed with a needle was overwhelming.  But gradually, as routine took over un-known and in the midst all those bad words above, began to sneak HUGE moments of joy.  Little reassurances that God was with us.

  • Joy.  My son’s unbelieveable faith.
  • Joy.  The comforts of stranger and the supportive response of our community.
  • Joy.  Connection to family.  Hours in the hospital forced me to spend unscripted time with my son.  We told stories, sang songs, prayed, read books, played dominos (oh.my.word – there were a few weeks there where I hated dominoes we played so often) and built legos and drove cars around the bedspread.  We cuddled and watched movies and held hands.  Andrew and I had countless hours in the car together with music and laughing, or me watching his dark-circled eyes fall asleep and knowing we’d get home before the nausea hit.  When my husband and I traded, and I was home with my girls, I valued the time so much that I put chores aside and cuddled with the girls more, reading stories and laying on their beds and taking walks in the woods.  I didn’t sleep, because laundry happened throughout the night, but my girls were such a priority.
  • Joy.  I learned to let go of perfection (well, except with the medication and doctor appointments, I might have turned a little OCD in that department) and just be.  Spend time with those I love.

And those were my moments of joy.  I found joy in the wilted flower my girls picked.  I found joy in the quiet cuddles before bed.  I found joy in the cards telling me people were praying and joy in the KNOWLEDGE that God walked with me and He wouldn’t forsake me, even if I didn’t’ like what happened during this life.

My joy came from knowing that this life wasn’t the most important.  Pain happens.  But joy comes from knowing that one day we won’t have pain.  Fear is there, but the joy of knowing the END result is heaven can override that fear.

I mourned and struggled, but God turned my mourning into dancing and filled my feet with joy. Tweet this!

Steve Green’s old, but happy song can come true, listen here!

Read more from the series 31 Days of Unexpected Blessings from Caregiving.

Celebrate the Victories (no matter the size)

Never underestimate the power of small, or large, medical victories!

Never underestimate the power of small, or large, medical victories!

We cannot discount the simplest and most appreciated blessing during any prolonged medical fight!  This (posted above) sort-of-poem-but-mostly-celebratory journal entry was the first time Andrew achieved the status of remission.  It was a chemo induced remission and came after about a month of the fight with leukemia.  That first month was hell.  This journal entry was victory.  It signaled that the three and a half year battle could now begin.

Caregivers and loved ones of caregivers – take every moment and every chance to celebrate victories along the way. (tweet this)

-the ability to eat food instead of a feeding tube

-an hour off the breathing tube

-the first step in physical therapy

-the first week clean from drugs

-the first trip home

-the first word spoken

-the first smile

Celebrate.  It’s a huge, unexpected blessing to let go, to smile, to laugh and to celebrate!

Celebrate the victories, it makes the battle easier! #write31days #caregiving via @caregivermom Click To Tweet

Check out the series 31 Days of Unexpected Blessings from Caregiving!

TRUST (in the middle of caregiving)

Is fear a lack of trust?

Is fear a lack of trust?

This five-minute-Friday link up has been all day in the works.  I invented lots of excuses to not write today; it’s my birthday, I needed to run errands for my kids, this is a hard subject, I had a lot to do and I wasn’t feeling well.

The truth however, is a little more tough, and the word trust is going to take a little more than the five-minute prompt instructs us to take.  Sorry, Kate Mataung, I did not follow directions!

Trust is a big deal to me.

I’m an honest person, ask anyone who knows me.  I don’t play games with the truth and if I say something, it is to the best of my knowledge, the truth.  I am trustworthy in that if I promise something, I’ll do my very best to follow through.  I live a life that allows for others to trust me (at least I try to).  And, I trust those around me unless they prove themselves to be untrustworthy.

I also have chosen to live my life trusting in my heavenly Father.  I was blessed to be taught and shown that type of love and trust through my parents and siblings and have chosen to pass that on to my children.  I firmly believe that God works so that ALL things work together for the good of those who love the Lord.

Here’s the tough part that caused me to pause my writing and clean my house instead.  Because here is more truth about me.

When my son was diagnosed with cancer I was scared.

I worried about his prognosis.

I rode the doctors about medications and had to know every little detail of his treatment protocol.

I fretted about time away from my girls.

I feared the effects of the nasty drugs in my son’s life.

I trembled at the thought of losing my precious boy.

I cried when his beautiful red hair fell out.

I was aghast at the length of treatment.

I felt sick to my stomach every single morning that we got up early to go in for chemotherapy.

I couldn’t sleep any longer at night.

I was distressed when he lost so much weight and threw up all the time.

I was dismayed at all the time he had to spend in isolation.

I panicked about germs and checked constantly for temperature and things that would cause infection.

I obsessed over his medications and his doctor appointments and pretty much freaked out if we missed or even were late to either one.

I lived in a constant state of anxiety over the well-being of my entire family being rocked by a three and a half year treatment plan (once we got through the first year that said we might HAVE three and a half years).

I got the jitters when any conversation would turn to cancer or chemotherapy (OK, full-disclosure…I still kind of do that).

Does this sound like a lady who ACTUALLY trusts in God?  I felt like I was failing miserably in the trust department because people told me to “let go and give it all to God.”  How could I obsess over laundry and medicine and still claim to be trusting?  How could I worry and still believe in God?  How could I have so much anxiety if I truly, absolutely and completely trusted?

Had I failed as a Christian when I was tested?  And, what’s more, why am I writing this under the title of Unexpected Blessings when I’ve just torn myself inside out and shown what a lack of faith and trust I had in Jesus.

Can you see why I wondered?

Because at the same time all these thoughts were in my head, people told me my faith was inspiring.  That our rock solid behavior was admirable and that we were “handling this whole cancer thing SO WELL.”  Really.  We were told that.

So who had a skewed version of life?  The observers, who thought I had faith and trusted in the Lord, or me, who worried about all the details?

It’s been ten years, and I’m writing this today, because of the conclusion I’ve come to about my faith and my trust and my fears and my doubts.

In spite of the list of anxieties listed above, through EVERY MOMENT of my son’s illness, and I mean EVERY-MOMENT, I trusted that God had a plan and that my boy and my family were in His hands.  I knew God could say “Yes, your boy can live,” or God could say, “No, your boy needs to be laid to rest.”  I trusted implicitly that God held us.  And truly, I was okay with that.

What I feared was myself.  Could I handle losing my boy?  Could I handle life if I had not done every single little thing that I could to help my family?  Could I trust my own confidence?

My greatest fear in life, before my son’s diagnosis, was that I could not handle anything happening to my children.  That fear was so very great in my life that I almost chose to not even have children.  I’m not good with medical emergencies.  Well, actually, I am, but then I fall apart afterwards.  So how could I ever handle something happening to my children?

And this, my friends, is my unexpected blessing.  It’s a blessing so huge that I could not write about it all day long and while I am typing, I have tears streaming down my face.  God was with us, every step of the way.  I screwed up many times.  My husband wasn’t perfect.  My children were bratty and emotional and wonderful and loving.  We’ve walked through the valley of the shadow of death and I WORRIED.  But I worried about the details.  I did not worry so much about the outcome, as the details,

God has given me a HUGE sense of trust.  Life hurts – often.  Kids do their thing instead of mine – it’s a guarantee.  My husband still isn’t perfect.  I still screw up.  But I KNOW.  I know that there is nothing that God cannot get me through.  I know that He will be with me when my brain is too fried to remember Bible verses of comfort and when the thought of reading a devotional makes me want to scream.  I know that He will send friends to help and He will supply my needs.  I know that He will take care of my children.

The war is already won.  Our future is with God for all of eternity.  He holds us in the palms of His loving hands.  And that, my friends, you can TRUST.

Am I trusting in God if I'm worried and scared? #write31days #FMF via @caregivermom Click To Tweet

There are more stories in the series 31 Days of Unexpected Blessings from Caregiving

My Salute to a Different Kind of Warrior

12-years post transplant

After two days in the hospital and a handful of pokes and a pesky IV line constantly attached to my right arm, I’ve come to a sobering realization. I jokingly whine and complain a little about the inconvenience of it all. The size 3XL standard issue pants, for example, along with the sexy, open-backed gown that wraps me from shin to chin. The lack of rest one has at night on uncomfortable hospital beds with nurses coming in every four hours to check your vitals. The quotidian routine, broken only by soft knocks on the door when someone wants a sample of this or a sample of that.

I am a wimp: A true, homebody, an I-don’t-like-to-have-to-ask-for-everything-and-I’d-rather-do-it-myself wimp. And so today, I stand in awe of the warrior my husband and the father of our children was for nine long months during 2002 and early 2003 when he fought daily to stay with us.

He made a promise to the first doctor he saw that he would be compliant—he would take any medicine, agree to any procedure, do whatever they asked—in order to get well. And he did. He suffered through four surgeries, countless kilos of IV fluids and morphine and enough toxic junk to kill a lesser man.

He put up with intubations, open hospital gowns, quotidian routines (although, when he felt well enough, he did play a prank or two), spinal taps, bone marrow biopsies, radiation, transfusions, infections, depression, loss of appetite, torturous walks around the hospital ward (they wanted him to walk at least a mile a day) with me or his brother pushing his IV pole for him because he didn’t have the strength to do it himself.

Stand Up to Cancer

Every warrior needs reasons to fight.

Pedro is a fighter and it’s only now, after spending a measly two days in the hospital, that I appreciate how hard he fought so that one day he could watch our girls graduate from high school. He’s even walked our oldest down the aisle and given her hand in marriage to a wonderful young man. He’s been there for Laura’s college graduation, and God willing, he plans on being around for Katrina’s graduation and wedding one of these days.

All because he stood up to cancer and agreed to fight. To put up with the indignities and the idiosyncrasies of hospitals and their staff (one day, I may tell the story of ‘Catheter-training Nurse Lisa’) so that he could attend recitals, cheer at tournaments, go on father-daughter dates, give his wise counsel and love unconditionally through every challenge that arose.

Not all warriors fight on battlefields, and their deeds of bravery need to be acknowledged. Click To Tweet

I salute you, Pedro, for the warrior that you are. Thank you for your sacrifice and your sense of humor. You inspire me. I raise my emesis basin to you—Here’s to another 26 years!

Do you know a warrior who fights without complaint or recognition for his or her family day after day?  Salute them in the comments section!

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your most inspirational post from the previous week (just ONE, please).

2. Vist TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer–just do it!

Please link back to this week’s post or add the button to your post so that we can spread the inspirational cheer :).

So, go ahead! Take the plunge and share your most inspiring post with us!

Take a moment to visit the other hostess, Angie, too!

 

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God Has a Purpose for Your Life

Our lives do not happen in a void. http://wp.me/p2UZoK-H8 via @blestbutstrest #kisscancergoodbyeI haunted the hallways, waiting for the doctors to finish their regular morning meeting in the corner room. For days Pedro’s life had hung in the balance while a yeast infection in his blood ravaged his cancer-weakened body. The chemo treatment he had received shortly before the yeast started colonizing had killed off his white blood cells, and his body had nothing left to fight the newest onslaught.

The day before, the doctors had discussed giving Pedro a white blood cell transplant, and had asked about possible sibling donors. I had called Pedro’s only sibling and he stood by, ready to fly to San Francisco and do whatever it took to help out.

I let everyone back home and all of the people on the update email list know about the special prayer request—that Pedro’s brother be a match and that the white blood cell transfusion would turn the tide.

When I saw the resident on call walking towards Pedro’s hospital room, I rushed over and exclaimed, “Pedro’s brother can be here in four hours. Does he need to do anything before he comes to see if he’s a match?”

The doctor shook his head, “A match for what?”

“The white blood cell transfusion!” I exclaimed. I knew everyone discussed each patient every morning, so surely this doctor knew what Pedro needed.

“No one told you?” he asked.

“What?” my heart wavered between my toes and its usual place. The doctor’s stoic expression didn’t reveal much.

“He won’t need the white blood cell transfusion!” A smile broke out on his face. “He’s producing his own white blood cells.” His face sobered. “Now we wait some more.”

I stood there, stunned, as he hurried off down the hallway, muttering something about miracles under his breath.

A miracle of epic proportions, indeed. Pedro’s body had started producing white blood cells again two days earlier than it had at any other point during treatment. The prayer warriors had prayed for a successful transplant, and instead God had provided something even better—he had given Pedro the ability to fight on his own without another procedure.

Looking back, I don’t understand the reason for the miracle (maybe I suffer from a bit of survivor’s guilt by proxy). Thousands of others have prayed for healing and for miracles, and God has answered their prayers differently. My own grandpa suffered a slow death from mesothelioma (lung cancer caused by exposure to asbestos).

But this I do know. God has a purpose for each of us. Our lives do not happen in a void. (tweet this)

Maybe that doctor needed to see a miracle in order to believe in God. Perhaps a nurse needed to know that the selfless way she poured herself out each day on the cancer ward really did make a difference.

Maybe I needed to realize that my arranging and organizing and control had little effect on the outcome of Pedro’s journey—God would perform miracles in his own time and of his own choosing. I needed to relinquish the driver’s seat and concentrate on prayer.

Almost thirteen years have passed since that incident, and Pedro is living out his God-sized dream as the principal of a mission school for Native students. The work never ends, it seems. I don’t mind, though, because I know that God saved him for such a time as this.

Today is World Cancer Day, and I’d like to thank God, first of all, for healing Pedro. I would also like to thank God’s hands and feet—the doctors and nurses at the University of California, San Francisco Parnassus campus who work tirelessly in the Hematology Oncology clinic and in the trenches on Eleven Long. Thank you. Your dedication to healing and helping thirteen years ago makes a difference in the lives of troubled kids today.

What about you? Is there anyone you want to than

Thankful to be Cancer Free

Thankful to be #cancer free! http://wp.me/p2UZoK-BB via @caregivermomJust yesterday I watched a blond-haired mom smile weakly at something witty the receptionist said and reposition her son’s bald head on her shoulder. The little guy whimpered and cuddled in closer. He was around three years old and his bare head showcased a huge scar arching over his right ear. He settled back in quietly as his mom adjusted the medical line from his nose.

I was speechless. I couldn’t quit taking peeks at them from the corners of my eyes and I could think of absolutely nothing to say.

I’ve written blog posts about how to help cancer caregivers and I remember vividly how hard it was to sit in silence sometimes. But I couldn’t speak to her. I knew her struggles and recognized the stage of treatment the boy might be in and I could not speak.

My strapping, healthy 14-year-old cracked jokes by my side while we waited in the pediatric oncology/hematology clinic at the Children’s Hospital. We were there for a wellness check—I had no worries at all that the oncologist would find anything but sheer health in my cancer surviving boy. This was a follow-up. A he’s-been-out-of-cancer-treatment-for-almost-seven-years celebration.

But I found it difficult to swallow and the queasy feeling I remember so well from treatments starting ten years ago made itself at home again in my middle.

That woman, sitting there cuddling the boy in the midst of their storm struck such a chord in my heart. How many hospital rooms had I sat in while cuddling a bald boy who didn’t feel well? I found myself praying for this little stranger-who-seemed-so-familiar and for his mom, who carried him into the inner sections of the cancer ward during my prayer.

We went inside too, where my son laughed and joked with the oncology staff. My son who fist pumped when measured at an official 5’9” and passing me in height. My son who is on the honor roll at school and plays basketball with joy.

I find myself today feeling incredibly blessed. As I begin cooking for a thanksgiving meal with all three of my healthy children home and laughing together, I find myself praying that the blond woman from the cancer ward gets to have a thanksgiving meal with all of her healthy children present. Maybe seven years from now she’ll sit in a cancer clinic waiting room, praying for another mother who is cuddling a bald child. Or maybe, cancer won’t be a medical issue any more. Wouldn’t that be great!

For today though, I choose to count my blessings and pray that others feel equally blessed in spite of, or maybe because of, all you’ve gone through. (tweet this)

Happy Thanksgiving!

Cancer Changes Everything (but Maybe That’s OK)

Pedro challengeAt one point during Pedro’s illness, he promised himself that he would forevermore have a positive attitude if someone asked him to do something or try something that he wasn’t sure he could or wanted to do. This led to some crazy adventures post cancer.

A year after cancer, my dad invited us to climb Mount St. Helens again (we’d climbed it ten years earlier when I was pregnant with our second child). Pedro said, “Sure, why not?” and so we started out on a crisp July morning that eventually turned into the hottest day of the year thus far. Every twenty feet throughout the last (really long) mile, Pedro uttered the same phrase, “This is the stupidest thing I’ve ever done. I should have said, ‘no’. What was I thinking?” Secretly, I’m pretty sure he’s glad he did it.

Two years after cancer, the school I worked for needed a last-minute male chaperone for a mission trip to Honduras. And so, you guessed it, Pedro said yes and spent two weeks building a school on an island off the coast of Honduras.

Three years after cancer, a motorcycling friend invited him to ride to the top of Mt. Baldy near Bozeman, MT. Pedro said, “Sure, why not?” and almost died. But he did have fun on (more…)

Firsts: A Story in Pictures

“Remember your journey, from Shittham cancer to Gilgal wholeness, that you may know the righteous acts of the Lord.” Micah 6:5b

Sometimes, pictures tell a better story (tweet this).

Keep a record of your journey–whatever it may be and wherever it may take you–so that you can remember the righteous acts of the Lord.

Pedro's brother, Noel, helps Pedro prepare for his first chemo.

Pedro’s brother, Noel, helps Pedro prepare for his first chemo.

After having a port installed near his collarbone, Pedro suffers through his first chemo treatment.  The tumor makes his neck and face appear fat.

After having a port installed near his collarbone, Pedro suffers through his first chemo treatment. The tumor makes his neck and face appear fat.

The lymphoma cells froze Pedro's face and prevented him from swallowing.

The lymphoma cells froze Pedro’s face and prevented him from swallowing.

Pedro got out of ICU the day Laura and Sarah came to say their last goodbyes.

Pedro got out of ICU the day Laura and Sarah came to say their last goodbyes.

One month later, the doctors let Pedro leave the hospital to wait for his stem-cell transplant procedure to begin.  The girls come for another visit.

One month later, the doctors let Pedro leave the hospital to wait for his stem-cell transplant procedure to begin. The girls come for another visit.

Pedro presents a picture of glowing health (ok, see the photo above and draw your own conclusion ;) ) on the day of his stem-cell transplant.  It took 10 days of shots to the stomach and harvesting to produce enough stem cells.

Pedro present a picture of glowing health (ok, see the photo above and draw your own conclusion 😉 ) on the day of his stem-cell transplant. It took 10 days of shots to the stomach and harvesting to produce enough stem cells.

Pedro walks Laura down the aisle--a walk that many doubted he would ever make.

Pedro walks Laura down the aisle–a walk that many doubted he would ever make.

 

What to do When the Chaplain Visits

Or, Advice to Chaplains for Visiting the Ill

chaplain
Laughter on the Cancer Ward?

Our laughter and snorting could be heard in the hall—I’m sure of it. Even with the door closed. Transplant Day loomed on the horizon. Pedro’s remission and recovery marveled the doctors daily. We sat on chairs in front of the narrow table, just feet from his tether-like IV pole gazing at the computer screen.

Marisa Tomei and Joe Pesci argued on screen while Pedro and I laughed over their relationship and our shared memories of years ago when My Cousin Vinny first came out. We had forgotten the humor, the pathos and the great acting—not to mention the raunchy sex scenes—things that didn’t bother us in our twenties but made us cringe in our thirties.

I hit the pause button like a guilty teenager and looked inquiringly up when our door opened and two women I’d never seen before slid into the room. Their white collars and somber attire proclaimed their occupation. Doubly guilty!

Unexpected Visitors

“I’m Reverend Rosa*, the chaplain,” the elder intoned. “This is my intern, Jennifer.”

Pedro, the dirty dog, answered not. “Nice to meet you,” I lied. “I’m Anita and this is- -“

“Pedro. We know.” Reverend Rosa glanced down at a thick clipboard in her hands. “He has cancer.” Sympathy oozed around her voice.

“Had.” Pedro corrected. “Stem-cell transplant tomorrow.”

“We see.” They seemed determined to be depressed for us.

Silence hung in the room like a too-big bubble ready to burst. In all of the days and weeks and months we’d been at UCSF, this was the first visit from a chaplain.

Our pastor from back home, Ron Halvorson, Jr., had flown down during one of Pedro’s worst episodes and anointed him. Pastor Ron’s wife Buffy regularly prayed with me over the phone. We weren’t shepherdless.

“Tell us, what do you do, Pedro, to keep your spirits up in difficult situations like this?”

“Watch funny movies,” Pedro quipped; our guests remained silent.

“They say laughter is the best medicine,” I babbled, wanting to fill the maw his answer had opened in the conversation.

“Indeed.”

Check Your Attitude at the Door

Their seriousness startled me. What was with these women? I glanced at Pedro and my eyes quickly skittered away. He was on the verge of uncontrollable, hilarious, unstoppable laughter. We were on the same page. Note to self—do not look at Pedro until these ladies leave.

I let the silence stretch. Pedro wanted them to leave, but neither of us was willing to help them out of the room—or the situation.

“Have you found solace for your sorrows?” Reverend Rosa’s eyes seemed to probe the room, searching for illicit items of solace. Dirty magazines? Vodka? Drugs? What was she looking for?

“Psalms.” Pedro’s pithy reply opened up another conversational crevasse. I decided to leave it at that. During Pedro’s darkest hour, Sarah found and chose Psalms 18:1-6 as something that resonated as a promise for her Papá. She had carefully copied it out and sent it to us. Pedro promptly taped the promise to his IV pole. The medical staff had put been on notice that the unseen physician was on our team.

“Pedro’s doing quite well, now, and his progress is a miracle.” I couldn’t keep my mouth closed and compulsively tossed them a gambit. Maybe we could talk about all the wonderful ways God had been with us.

“Praise God.” Jennifer intoned, reverently glancing upward.

How to Leave a Patient Feeling Refreshed (not)5 tips for #chaplains to read BEFORE they visit a sick person. http://wp.me/p2UZoK-ib

That’s it? My eyes danced past Pedro’s again, and I gave a small shrug. They weren’t exactly Pastor Bildad; I had to hope they were well-meaning. But the movie called, and the conversation had sat on the tracks long enough.

“It was nice meeting you guys.” I stood and glanced at my watch. The situation called for preventative prevarication. “This is Pedro’s normal nap time.”

Pedro took my cue and made moves to stand. I took a good look at him, and tried to see him through chaplains’ eyes. White male, 35-years-old, 6 foot 2, 140 pounds (up from 135), no hair, face partially paralyzed, eyes bulging out under concave brows, port with four lines sprouting from neck—ok, so his looks belied his condition.

“May we pray?” Reverend Rosa queried.

“Absolutely.” I assented, compassion tingeing my voice. Pedro nodded. We all bowed our heads and the chaplain said a prayer.

I walked to the door behind them, struggling to hold in my mirth, feeling holy and unholy at the same time. Before I shut the door, I waited until they had turned the corner, on to their next mission of mercy.

Looking at Pedro, the laughter burst forth. Deep, delirious, healing: holy.

Our advice to clergy who visit the seriously ill?

1.  Develop a relationship–or at least get to know who you’re visiting before you enter the room.  Anyone on Eleven Long could have told the chaplain that Pedro was in good spirits and on the mend.

2.  Don’t have your own timeline.  If it looks like the patient is busy, make sure to ask, “Is now a good time for a short visit?”

3.  Don’t have your own agenda.  Listen for clues from the patient and the family as to what they’d like to talk about.

4.  Reach out regularly.  The chaplain at Bozeman Deaconess Hospital left kind and encouraging notes if she happened to stop by when Pedro was out of the room.

5. Remember that Jesus came alongside people in pain–think about what this would look like in each situation.