ThE MoUnTaiNs ArE CaLliNg...AnD i MuSt gO

~everything you can imagine is real~

far away in the sunshine

are my highest aspirations.

i may not reach them, 

but i can look up and see

their beauty, believe in them,

and try to follow where they lead.

-Louisa May Alcott

ShOw tHeM..

~That moment when you show your kids how to live, instead of tell them~

We went to the grocery store to get treats for Cole's birthday tomorrow.  When we checked out I had a thought to take out some cash, which I never do.  

As we drove out of the parking lot, an elderly homeless man, shaking from Parkinson's, holding onto his walker held a hand-written sign, and a smile on his face.  I never want to be the judge of when someone else needs help or not so I usually give a few dollars, or whatever small cash I have in my wallet, usually less than $5. 

I rolled down my window and reached the $5 out the window.  He had to stumble with great effort over his walker to get the money.  I wished him 'good luck', and drove away.  My kids are used to seeing me do this.  Half a mile down the road I had a very strong feeling I should go back and give him more money.  I became emotional and struggled with whether to turn around or not...I was almost to my neighborhood, and I had pop-cycles in my trunk.

I pulled the car around, and drove back.  I gave Cole the money from my wallet I took out when I was paying for the groceries, and told him I wanted him to jump out of the car to hand it to the man when we pulled through the parking lot again. 

As we pulled around, I saw 1 out of 5 cars in line hand him some money.  I was sure he wouldn't remember us.  I pulled around, and as Cole jumped out to give him the money the elderly man looked me right in the face and said with a smile oh his face, 'oh you are back'.

I tried not to cry as I told him I had a strong feeling to come back and give him more.  He began to tell me he needed to find better shelter, and he was grateful for me

turning back around.  He touched my kids faces through the door of the car as they smiled at him and gave him well wishes.

We had to leave as cars pulled up behind us. Cole asked, 'Mom, why was that man shaking so bad, and why did we go back and give him the money from the store?'

I got the opportunity to share a lesson with my boys. I had their undivided attention because of the homeless man. The lesson was not judging others, and helping them when we can.

'We can't always help, but when we can, we should'.

We talked about how sometimes things happen to us beyond our control.  I asked Cole if he remembered daddy getting cancer.  He said 'yes'.  

I told him that the old man's body got sick, just like his dad's body had.  I could see him grasping the concept of humility as we talked about it. I explained how the man's shaking would make it really hard for him to work, and that's probably why he was asking for money.

Cole asked me if people helped us out when we needed it.

I said, 'yes'.

My kids sat back in their seats, and seemed to feel compassion for the situation the man was in.

 It's moments like that which will ultimately shape who my children will be as they get older. 

  

I feel good...

today I woke up with

messy curls in my hair,

a smile on my face,

and feeling peace.

i love my life.

it's not a perfect life.

it's not the life i wanted, 

or planned for myself.

but...

i have 2 beautiful kids.

i have amazing friends.

i love who i choose to be.

i know what i want,

and who i am.

nothing can replace the warmth in my heart.

good morning world,

good morning life...

Surviving Cancer, My Story Part 23: Transition, no one says, 'when I grow up I want to get cancer.'

Part 23: Transition, no one says ‘when I grow up I want to get cancer.’

The Hickman removal procedure went well. Dan was relieved that one of the more physical parts of his cancer would no longer be a burden to his body.  Elements of the disease were quickly being removed from Dan, and our family, now that he was taken off the ‘active’ cancer patience list.  First the tumor, then the affected parts of his hand, followed by the tubes, drugs, and vomit bins strewn all over our house. It felt good to rid ourselves of something so unhealthy.

“Do you think it will ever come back?”, I asked him, as we sat on opposite ends of the couch staring at one another.

“No”, he replied, “It’s like they took my batteries out, flipped them around, and now I’m good for a little bit longer”.  He smiled at me in an effort to reassure me.

His sense of humor seemed to be coming back.  It had been close to a year that I hadn’t recognized who the man I married was. His emotions had become a roller-coaster at best, leaving me on edge to his unpredictable moods and behavior.

As we continued to talk, I asked him if he thought there was a chance our sons would ever get cancer due to their gene pool.  The thought had crossed my mind several times as I watched our kids go through the early stages of learning to walk, talk, and recognize that they were loved by a family.  My husband had gone through these stages as well once, with a mother who couldn’t have ever guess her son would go through what Dan had just experienced. It would be like asking a child what he wanted to be when he grows up, just to hear him say, “when I grow up, I want to get cancer.”

“By the time our kids are adults, there will probably be a cure for cancer”, he theorized, “I will be someone who survived cancer the old-school way, while younger generations might only need to take a pill, or a shot, like an antibiotic”.  My mind tried to capture the vision of an older man showing his battle-wounded hand from a deadly disease to his grandchildren while they gawk in amazement.

 (Dan's first growth of hair post cancer)

He still couldn’t move his hand or fingers very well, and had become very frustrated, the direction pointed at me, and our children.  His irritation level had increased significantly since he was no longer under the influence of chemo, and he was more alert during the day, aware of his permanent hearing loss, nervous system damage, and delayed memory.

“I can’t wait for life to be back to normal again”, he said, as his eyes starred off into the distance.  What was normal?, I thought.  We had been focused on his cancer for so long I hardly could remember what normal in our family looked like.

I had started to recover from the staph infection I had been gifted from my visits to the cancer hospital, while Dan continued to gain weight, and small patches of black peach fuzz started to emerge all over his skin.  It resembled the hair on a newborns body…new, thin, and the wrong color.  Before Dan’s chemo, a common joke between us was the lack of facial hair he was able to grow in a normal amount of time.  So naturally it was a subject of surprise and laughter that he now was growing in a thick amount of black hair on his upper lip.  His chemo not only cured his cancer, but gifted him super-human hair growing powers.

My in-laws came to town to visit Dan’s older brother.  Being less enthused to spend time with a family that spent more time on competing for height and who was more popular to the parents, than building sustainable relationships, I decided I should rest from my fever that seemed to fluctuate between 102 and 104 degrees in the previous week while my body fought the nasty infection I struggled to get rid of.  I stayed in bed most of the weekend, alone.

Ironically I had started to feel better by Monday, shortly after Dan’s parents left town.  Dan continued to seem more irritable than usual, in addition to extra sarcasm that he undoubtedly picked up from his parents visit.  It would be much later that I would learn the ideas that had been planted into my husband’s mind, by his parents, through subtle irrelevant conversation. These ideas and suggestions would eventually grow in his mind as rampant as his cancer had been in his hand, damaging everything in it’s path in the same way it would for our marriage.

Bitterness grows just as effectively as a disease.  Once we allow it to settle into our hearts, it is there, waiting for nourishment and attention to feed it’s destructive intentions.

How his parents dare accuse me of alienating him from his ‘family’, meaning them and not myself and his kids, was beyond reason in my mind.  I helped save their son's life.  Pain flooded my heart the first time I heard him blurt out this phrase in a moment of frustration toward me.  I sensed the blame that he was starting to adapt in his mind toward me, as his parents had decided from the beginning. After all, wasn’t I the cause for their little boy to grow up and have to become a man?

Dan’s physical therapy had been underway for several weeks now.  His fingers were stiff.  His pinky finger immovable.  It would never be functional again, merely a cosmetic remnant for distracting the eye to what had been removed. Every time he tried to use his hand to pick up an object he felt that his hand would rip open, down the stitch line from the weight.

Those days were full of pain, frustration, and realization that not everything would be going back to normal.  Some things can’t be undone, only remedied by a new resolution.  Dan was faced with the decision of either accepting this reality, or fighting it. His hand would never be the same, and neither would the rest of our young family.  It would either get better, or get worse, the difference made by what we consciously would decide.

 (Cole's first stitches after an accident at pre-school)

Halloween was right around the corner.  We planned our costumes to reflect upon what we saw in the mirror, and the complexity of the war we had just been in.  Pirates!  We were all going as pirates.  Dan’s patchy hair and tall thin frame would be perfect.  The week before the holiday, Cole had suffered his first stitch job from an accident at school to his eyelid, leaving him with a brilliant bruise around his eye.  There would be no need to drum up anything more than ragged costumes.  We all looked haggard, rough, and worn down, perfect for the role.  It was the first time we had a real activity with the four of us together since before Dan’s first treatment.

(Halloween 2007, Pirate Cancer Survivors)

A few weeks later we took our first date since the beginning of our nightmare.  We met my cousin and his wife for bowling.  Although Dan had started looking so much healthier and had gained some weight back, his bowling demonstrated he wasn’t quite whole yet.  As he threw the ball back and walked forward to released it onto the lane, he almost fell over each time he let go.  He was used to weighing more than he did, also being stronger than he had been left.  Little nuances like this and the permanent effects of his treatment were starting to wear on him, increasing his distant demeanor, and irritability.

(Ethan's 1st Halloween)

The letter written by a local business owner of a financial institute flashed through my mind.  He had included his note with a check made out to our family during the community fundraiser the month prior.  His wife had previously had cancer.  He expressed his grief for our family, and his personal sentiments.  He said after going through something like cancer, it could affect you for the rest of your life.  It has the ability to destroy the rest of your life, and your relationships, if you let it.  His last counsel in the letter was to simply not ‘let it’.  At the time it meant a lot less than it was starting to mean to me as we were moving to the transition phase of our year with death.

Still in somewhat denial of what was really going on in my home, I attributed Dan’s destructive behavior to post traumatic disorder from his amputation.  I encouraged him to see someone.  Once a week he started going to these appointments. I joined him at the end of the month visits, to get caught up to, and understanding what his current needs were. Everything in my opinion could be fixed, nothing couldn't be undone with a little effort, and determination. Little did I know I had need of overcoming the trauma I had experienced as a woman who watched her husband slowly and painfully almost die.

I was still in a state of abandonment from those around me not realizing that the care taker suffers just the same, if not more, than the loved one the are watching die right in front of their eyes.  Like watching the same horrifying image of the World Trade Center fall, or video clips of war from the holocaust, over, and over again, they begin to haunt not only your mind, but your heart.

(World Trade Center Falling)

Much different than starting out with a deadly disease, where your doctors explain in great detail what you are up against, and how they plan to save your life, networking with specialist on your behalf, trying to leave the cancer world was like being handed an ‘all-clear’ pink slip on your way out the door while hearing someone shout out, ‘Good Luck!’.

My husband was trying to transition back into a world he was seeing through different eyes, and didn't quite belong in anymore.  I was trying to adjust to a man whom I still recognized as my husband, but registered as a stranger to me while I watched him enter a new state of limbo.  He was no longer a cancer patient, but not quite yet a husband and father again, with the stability of a daily routine providing for his family.

The question entered my mind several times, ‘Where do we go from here?’

Although lost, and nothing the same as before, I clung to the words ‘this too shall pass’.

These words gave me the strength to believe that the trials we had faced, and were still up against, would subside.  The consequences otherwise were not something I had ever considered, nor wanted to. 

I was determined to believe that ‘this too shall pass’, and we would both be closer because of it.

A ChriStMaS TreE fOr ThReE

A Christmas Tree For Three 

by Tatum Merrill

written for sprouts Cole &Ethan

____________ 

The hunt was on,

to find a tree,

one to be

the tree for three.

A 'noble' fir showed up the rest,

'we three' had found the tree,

the best.

Tradition called for mom

to trim, 

to prune, to groom, 

and make us

grin.

Our music tunes

we danced about,

the Christmas spirit

left no doubt, 

 Our tree would soon 

be glam adorn,

with lights,

and magic, 

and trinkets 

forlorn.

 Our favorite decor 

so long packed away...

A snow globe,

a reindeer, 

 a bike,

 and toy sleigh, 

Visions of Santa,

soon came to mind..

boxes, presents,

and gestures of kind.

So much magic

for a tree to unlock.

Is Christmas more 

than a toy-filled

sock?

Dreams of eight 

reindeer,

and the man 

who wears red,

quickly changed pace,

as I thought in my head.

The story oft told, 

during the holiday 

season, 

made me ponder the tree,

it's message, 

and reason.

 The star atop the tree

lit up the sky,

shone brightly 

back then,

for The Lord, 

Prince,

One High.

 It lit up a path

where the babe Jesus lay,

born in a stable, 

a manger with hay.

Gifts, treasures, and love unfold, 

were brought to the babe, 

they even brought gold.

The gift he gave back was

life to man-kind.

No greater a gift could 

any man find.

 

So why the tree 

in the dead of the night?

...to represent life,

new birth, gift, 

and light?

  Yes, my heart said,

this was the reason,

for Christmas,

gift-giving,

the tree, 

and the season.

Christmas is more than just

Santa and toys.

It's the cause

of our 

happiness,

and all 

of our

joys.

 

I stood back from the

tree,

and stood with some

poise,

 

it needed respect,

we quieted the

noise.

 How lovely our tree 

made my heart simply say,

this is a message

we should give away.

In our actions, 

our thoughts, 

and even our deeds, 

we should pay attention

to others needs.

Whenever a gleaming 

tree 

I walk by,

I'll give the true 

meaning

of Christmas

a try.

Who knew

the message of 

The Christmas 

Tree, 

would give new 

meaning

of Christmas for 

me.

Merry Christmas!

Surviving Cancer, My Story Part 22: Change

 Part 22: Change

 We drove to Hunstman for our next appointment with Dan’s chemotherapy doctor.  Dr. Chen reviewed his blood work, and chart. “We are going to put your treatment on hold for now”, she said, not averting her eyes from studying his chart.  “What does that mean?”, Dan asked.  She explained that his red blood cells were just not recovering the way they should be since his last round of chemo.  Dan had received 4 blood transfusions since round four of chemo.  Starting him back up for round 5 with his body not recovered enough from all that he had been through would be dangerous and counterproductive.

“Will that put him at risk for a relapse in his cancer?”, I asked with concern.  Dr. Chen dropped the chart to her lap as she sat casually in a chair across from us. “We will keep an eye on him”, she continued, “because so many dangerous cells from his tumor were killed we would probably only have recommended 2 more rounds anyway.”

My heart leaped with excitement from the news.  Could the treatments really be over?  Was that it?

It was more important for Dan’s red blood cells to return to normal in order for his fight with cancer to be sustained, and so his hand could heal properly from the amputation.  He was prescribed to start walking a little longer everyday, resting another month before going back to work, get his physical therapy under way, and to eat a healthy diet, to put the weight he had lost back on.

The swelling in his hand had started to go down. Full physical therapy was scheduled for the following two weeks.  He would need the healthy red cells to make it effective for the movement ability in his hand to return.

Dr. Chen explained that Dan’s type of cancer would require him to get screened every 3-6 months for several years, and then once a year for life.  Sarcoma was unlike other cancers, that usually had a five-year wait period before survivors could omit themselves from worry.  Dan’s rare type of cancer was the most deadly, unknown, and highly reoccurring kind out there.  Dr. Chen’s nurse, Cherry, set up two follow up appointments for us in the following two months, for final review of moving Dan to the official remission list.  He would undergo two full series of the tests he had done the last six months for more thorough results, and confidence in the decision to take him off treatment.  Dan could be taken off the ‘active patient’ list, back to work, and on with his regular life by Christmas.  I was anxious for the past year to be a forgotten nightmare.  The timing would be perfect for a new beginning.

 (Dan's Hickman Line) 

Dan’s favorite part of the appointment was the ‘go ahead’ to have the Hickman port coming out of his heart to be removed.  90% chance of no more chemo made Dr. Chen confident enough to chance that he wouldn’t have to have it put back in later. She knew the pain, and annoyance it brought to the patients it helped save.

On the way home Dan was beaming with excitement to get home and call our Radiologist to make the ‘tube removal’ appointment.  “I can’t wait to take a regular shower without saran wrap”, he said.  I was happy to know that I wouldn’t have to mother him as much for those tasks.  Although he would be unable to go swimming for close to 6 months to prevent bacterial infection at the site where the tube would be coming out, he would no longer need assistance before getting in the shower, and right after to dry off and disassemble the plastic wrapping protecting the dangling tubes.

As soon as we got home Dan was on the phone calling his parents with the news.  I went to the computer and wrote a ‘thank you’ letter to our church congregation, and friends for the silent auction and support they had given us during the last 6 months of our scary year.

 We wanted to write a letter to express how grateful we are for what you all did last Saturday.  The fundraiser was so overwhelming and uplifting to us.  We never would have expected it to be as successful or as big as it turned out.  We honestly were amazed at the efforts you all went to.  

The bishop said on Sunday that this wasn't an official church activity.  Showing true compassion and charity for the people in our ward and our neighborhood should never have to be an "official activity", it is something we should be doing everyday, by coming together like on Saturday or behind the scenes when no one is looking.  From the time we found out about Dan's cancer we have felt so loved and cared for.  I came home from the hospital several times to notes, cards, and treats on my doorstep, or a message asking how I was doing on my answering machine from a friend or sometimes someone in the ward I didn't know very well.  I've had people drop off food or diapers when I wasn't expecting it but really needed it because I hadn't gotten to the store that week. We have had meals brought in. People were always watching my kids.  A young man in our ward organized a car wash fundraiser that many of you went to and supported.  We didn't even know about this until he came to our door and handed me the money.  How can I even begin to express how these random acts of kindness have affected my family and affected my heart. 

We have gained friendships that wouldn't have been gained without this experience.  We consider all of you more than just our ward family, we consider you our friends. "A friend is one who strengthens you with prayers, blesses you with love and encourages you with hope."  You have all done this for us and we are greatly indebted to you all.  The money we received from all of your giving will help us through this hard year financially, but it is the love that we felt throughout this from you that will stay with us forever.  Thank you again, with love and gratitude, The Merrill Family.

I sat and reread my letter several times before I pushed send.  I heard Dan from the other room calling me.   He wanted me to help him set up the appointment for the Hickman removal.  After that phone call I knew I needed a nap.  I still wasn’t fully recovered from the staph infection I had contracted at one of my visits to Dan while he was in the hospital.  The antibiotic had large amounts of sulfur in it, which I apparently was allergic too.  My skin had turned very pink, resembling a bad sunburn, although I hadn’t seen much of the sun all year. My muscles, and joints were sore, and I was not only tired from the drugs fighting the infection, but tired from being a cancer patience wife.

 (Cole on his first day of preschool getting on the bus)

Cole had started his first year of preschool the week earlier, and our life had been trying to move forward.  Daily life of a family requires so much planning and attention from the wife and mommy.  On top of the regular tasks, I had been busy trying to save my husband from dying for half a year.  As I lay in my bed, I let my thoughts retrace all that had happened, and where we were at as a family.  I compared my tired thoughts against what was normal, and things that seemed unsettling to me.  On one hand I felt like we had grown so much together, while on the other hand I recognized that certain things wouldn’t be fully available for comparison until we were well past this hurdle, and onto a stable routine without cancer as a lingering factor.

I had become good friends with the other two young people in our neighborhoods who had recently battled cancer. All the stories they had shared with me flooded through my mind.  One you had cancer, even after remission, your life would be changed forever.   It couldn’t just go back to normal.   

Life after something traumatic required a new course, either full of new appreciation and gratitude, or cursed with regret, bitterness, and paranoia. 

Only time would tell which course Dan, and ultimately our little family would be on.

Before Dan’s appointment in the following week to have the Hickman line removed, we had one of our long talks on the couch.  These had consistently happened over the last year usually started out with a video update, and ending with us talking ‘off the record’ with each other about where we were at with our feelings, and attitude toward the unexpected trial in our life. 

In the beginning of all the diagnosing of Dan’s cancer, and the realization from his doctors that Dan could die from his disease, we made the decision to document the journey on film.  A documentary for others of what cancer was like, or a memory for our kids of their dad (in case he did die) when they got older was the motivation.  As I held the camera and sat on the opposite end of the couch from Dan, he talked about all the little things he took for granted that he was excited to get to do again once the tube was removed.  Who knew sleeping on your stomach, wearing a shirt, or holding your baby would be so under appreciated.  Everything that touched his chest, or rubbed up against it had hurt for 6 months.  Ethan had developed a habit, once he discovered the bump under his dad’s shirt, to try and pull on it like a toy, leaving Dan with less enthusiasm to hold him too close. 

 I talked about my excitement to not have to flush the tubes with daily doses of heparin, or do weekly dressing changes that made me more nervous than anything else.  All the exciting things we talked about led to the one scary part of the tubes coming out, the procedure itself.  The tubes would be gently tugged on, and pulled away from his body until the entire tubing system came out.  With only local numbing, and Dan awake watching the whole thing, it was a little scary considering the length of the tube, how long it had been in his body, and the vital organ it would be passing through and sliding out of, his heart.  

(chart of a Hickman line)

As we talked about it Dan lifted up his hand and ran it across his color bone where the tube could be felt under the skin.  There was a good size lump where they had stuck the tube into this jugular, and shoved it down the vein into his heart.  I shuttered at the thought of watching it come out, and was grateful I wouldn’t be permitted into the surgical room where that would happen.

No more home nurses would be required. I was looking forward to having my ‘open house’ become somewhat more quiet and private. Instead of attending to Dan all the time, I would be allowed to attend to the daily demands of my small children, which usually gave me happiness.  I had been missing a lot of the little things about them, and most of the big things that come with a new baby.  Ethan hadn’t had a full time mommy, nor a normal life since he had been born.  My mind was ready to be "dumbed down" to the simple things in life.  Instead of reading cancer pamphlets, and internet forums on ground breaking treatments, I would get to go back to reading 'Dr. Seuss', and 'Goodnight Moon' to my boys.

Before shutting off the camera I asked Dan if his cancer had taken a turn for the worse, and we knew he was going to die, what would have been one of his last requests or wishes.

He turned to me and quickly responded, “A new house”.

“What?”, I said confused.  He smiled and said, “I would wish for a house, for my family, so you would be taken care of, and the kids would have a place to call home.”

I pulled the camera away from my face as it still recorded, and looked at him with a half grin and said, “oh really…”, and then waited for his response.  He said, “Yep, a house…right next to your mom of course!” He couldn’t finish his sentence without laughing.  Although the conversation had turned to teasing, and late night banter, I still knew the thoughts had crossed his mind that if he had died he wanted us to be taken care of, and be by people who would love his wife and his kids.

In my heart I knew death wasn’t a factor anymore, and I was relieved. I could live without a house, but I couldn’t face thoughts of living without a husband.

The next day the tube would be coming out and representing a valid change.  The transformation of becoming Dan again from that point on would be marked by a series of checkpoints over a short amount of time.  How well he did when he came to them would determine how well he did at becoming himself again.  I would never have known that cancer would have changed my husband more after it had left his body, than it did during the time it cursed every physical part of him.  

 I was about to see how 'change' comes in the form of the decisions we make, more than it ever does by what happens to us, far from our control.