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

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 21: Silent auction, and fundraise my spirit

Part 21:   silent auction, and fundraise my spirit

The following few weeks were spent setting up physical therapy appointments for Dan’s hand and adjusting to life at home, continuing the recovery from his amputation.  The stitches were still not ready to come out. His hand became what it was in the beginning, dead weight to tote around, and coddle while it healed appropriately before his therapy to re-learn how to use it began.

Dan was starting to look a little healthier.  He weighed himself close to every day.  We were all happy that he was able to finally keep food in his body.  He committed himself to take short walks most days, even if it were just up and down our street with the kids.  He offered to take some dishes back to the neighbors who had been supplying us with meals during the times we were just a few days home from the hospital.  I loaded up a few casserole dishes in the basket under the stroller seat, and buckled up the baby in the front.  I told him the address, and he left the house. The 15-minute of silence in the house felt good.  Knowing Dan wasn’t dying in a hospital bed gave me the freedom to enjoy time alone.  My thoughts were no longer an enemy. I felt that my husband had been through the worst part of his cancer, and for the most part, had already won the battle.  A few more rounds of chemo, and a ‘remission’ pink slip were the only things standing between me and the path I desperately desired to be back on.

Although his appearance was starting to improve, Dan’s mind was still slow and foggy from all the damage the drugs had done to his brain.  The phone rang.  It was Dan. “What is the house number again?”, he asked.  I chuckled a little as I gave him the two digit number he needed to find his destination, and then said good-bye. Only a minute passed by before he called me again, asking the same question. He laughed at his realization that he couldn’t remember the numbers. He was unreliable for memory, and still was suffering from the permanent hearing loss from chemo.  A constant ringing in his ear made him irritable at night and frustrated when he couldn’t hear everything that was being said. 

One more minute went by before I heard the phone ring again.  I knew it was Dan.  I picked up the phone and before he could say anything I said, “three, five.”  He started laughing at this point, trying to speak through his embarrassment, “I don’t know what’s wrong with me, but I can’t remember those numbers as soon as I hang up the phone with you”, he admitted.  It became a joke, and source of entertainment as I teased him about the real reason for the five phone calls he made asking me for the numbers. I told him it meant he missed me, and that he needed to come home.

Things ‘upstairs’ were obviously a little off, and he suffered from extreme mood swings consisting of anger and bitterness, to laughter and a happy demeanor. Dan’s doctor had told him this was due to the low cell count in his body and would improve over time as his body regenerated itself into a more normal range of health.  It would take months before he would be feeling completely himself again.  Chemo was scheduled for 3-4 weeks later, making the date of normalcy being overlapped by a bath of chemo.  As he became more active, other nuances started to show themselves in the form of shaky hands, much like someone with mild partisans, achy joints, and a 4-hour nap every day.  His body was still much like an 80-year-old man, although temporary.

None of that really mattered to either of us much.  We were just enjoying the good news of his cancer diagnosis after surgery, along with his newly discovered peach fuzz patches of hair covering various parts of his body.  Little hairs sprouted from his head, upper lip, and eyebrow area.  The hairs gave us something to measure every day.  They first grew in black, shocking us, as Dan was a fair blonde his whole life.  Shortly after we shaved those black hairs away, a small amount of blonde ones began to slowly grow, giving us less joy and reason to fuss over.  It was apparent he would remain mostly bald until he was completely done with his chemo all together.

A friend from church I had worked with in an activity committee was one of our regular visitors. She was energetic, kind, and Christ like. We never hung out on a personal level, but I deeply respected and admired her for her qualities.  People were drawn easily to her, making her a natural leader.

She was one of few bold enough to ask me about our finances, in addition to the emotional burdens I had been enduring through out the hardest year of my life. Though difficult to reveal the truth, I pulled out the large stack of bills from the top of my microwave and began showing her the amounts we owed.  My cover for the seriousness of my admission was to joke about the large dollar amounts and shrug them off with laughter. After all, it wasn’t her problem.  It wasn’t even Dan’s problem; his only job for the last 6 months was to endure his treatments. The burdens beyond that were mine alone.

I was used to doing all the bills in our marriage and handling the finances, but what I was currently facing was something I couldn’t wrap my mind around, let alone begin to tackle with a plan.

Before ending her visit she asked me if the committee, at church, I once belonged to, could organize a fundraiser to aid some relief for our financial burden. The committee of women had come up with the idea to hold a ‘silent auction’ and breakfast for our family. They had already started organizing ideas for the event, and were gearing up to venture into the community, to carry out what they had planned.  Gratitude filled my heart, although I was naive to the extent of what they had in mind. 

I had never been the subject of a community fundraiser. I had no idea the magnitude of what a small group with big intentions could accomplish.  When I was in grade school fundraisers consisted of going door-to-door, asking your neighbors to buy over priced candy bars, and magazine subscriptions.

The following few weeks as Dan was home recovering, little angels were running around town enlisting businesses of any nature to donate items to be auctioned off. Items were handmade, packages bundled, and services designed for silent bidding.  As friends of the workings reported updates for the fundraiser, my mind wandered to some of the sacrifices some were making for our family. 

The young mother behind the organization signed herself up to cook for the attendee’s of the event. Her husband, a home builder, donated his time to practically refinish basement work on an auction winner’s home.  The intentions, thoughtfulness, and time put into the items up for bid came straight from the hearts of those that gave. It was a way for them to show they cared, and their deep devotion to help those that were in need. Most of the donations came from people we didn’t know. The Latter Day Saint church has long time been known for people helping those in need, regardless if they were stranger or friend. 

  The ‘Book of Mormon’ scripture that had been the source of so many primary lessons for me growing up took on a new personal meaning. 

“When ye are in the service of your fellow beings, ye are only in the service of your God”

(Mosiah 2:17)

When we arrived at our church building Saturday morning, the vision of a mini breakfast, and small auction in my mind disappeared.  A line of people came out of the cultural hall doors. Red tickets held in the hands of those who purchased plates for breakfast.  Families grouped together, waiting to eat $25 pancakes, and shop the full tables of items to bid on. 

Music played as we entered the hall. A slide show flipped through images of us from the time we met, to while we were dating, up until the time we were diagnosed with cancer.  The images changed in timing of the music. 

We were the center focus of why these people were all gathered there.  Mini shock waves ran through my body, the emotions of love overwhelming.  I can only imagine this was a glimpse of what heaven might be like.  God’s angels commencing together, embracing new and old friends, working to lift his children and save each other from personal hell and unhappiness.  These were the feelings I had felt on my mission.  I had been on the opposite end, not recognizing the gift of service and love on the level and magnitude I was feeling in that moment.

‘Succor the weak, lift up the hands which hang down, and strengthen the feeble knees’.

As a missionary this had been my scriptural motto when serving people and teaching them about Christ.  I was the one who was now being lifted up, my feeble knees strengthened.

My parents came up, our friends were there, our neighbors and acquaintances also. People who didn’t know us felt that they did.  Through stories shared about what we were going through, we had gained the sympathy of many. Like in a wedding reception people took turns coming to the table we were seated at, introducing themselves, and expressing support and sympathy.  As people scattered around the room writing down their bids for giant scrapbook baskets, over-sized handmade nightstands, and donated works of art, I sat by my family while I watched the slide show play over and over again.

My eyes were fixated on the images that reflected my memories.

Songs from my favorite movie ‘Charly’ played reminding me of an early marital lesson, on the importance of making your life with someone count.

I watched my life with that ‘someone’ I chose flicker on the screen for most of the time we were there.  Was the man I sat by at the table the same man in the photos I was entranced by?  No one knew my worry that he might not be.  

Generous hearts came and donated pure blessings that day.  Our family picture sat on all 30 tables attached to an inspirational quote concerning trials.  I read them, wondering if I was applying them to my life appropriately while in the midst of my current trials.

Trials teach us what we are; they dig up the soil,  

and let us see what we are made of.
 

Charles Haddon Spurgeon 

Every trial endured and weathered in
the right spirit makes a soul nobler
and stronger than it was before.

James Buckham

My self-evaluation forced me to review where I was personally at, opposed to where I began, when cancer had turned my life upside down.  I knew I had done my best, and that I had actually grown because of it.  I loved my husband and valued my marriage far more than I did before.  The usual complaints of wife, and mommy never entered my mind anymore. I had learned how quickly the people behind those complaints could easily be taken away. 

As Dan had endured his previous treatment and surgery, he had changed so much. It was hard to tell if he felt the same way. Some days I knew he did, while others left me doubting.  As with his recovery, it would take time before we knew where we were at, and how to move forward from a new starting point.

As the auction ended, and people began to leave the building, our committee of angels let us know the totality of what was raised for us that day. Well into the thousands. We knew our community and friends went up and beyond what we had ever expected.  The power that people have to do good in the lives of others is in everyone’s grasp. Choice, and action are the only things that either push us toward or away from that power.  Those women had tremendous power in my life that day. The ‘good’ that they brought into my heart will forever stay with me, reminding me to pay forward the debt.

My spirits were much higher than they had been in the beginning of this trial.  At the end of an emotionally uplifting day, Dan and I lay in bed, drifting into sleep, sharing our feelings of gratitude with each other, and our appreciation to belong to a gospel organization who teaches so much about not only making our lives better, but better for those around us as well.  I missed having a church calling. It was a way for me to feel that I was contributing to ward family.  For me, it was a large family, where everyone had a part in making it work.

The next day was Sunday.  Dan stood up at the pulpit, and shared his testimony.  The power of God in his life, the love of the church, community and friends, and his gratitude for me were his focus.  He publicly thanked me, expressing his inability to have endured what he had without me.  Had I just been given the sign that everything between us would be all right?  I chose to believe that it was, and allowed myself to feel free from the burdens that caused me to worry from time to time.

I remembered the last letter Dan had written me from the hospital, after his surgery, and before he came home.  I had contracted a staph infection from being at the hospital so much while taking care of him. The heavy medication I was on to clear my body of the stubborn bug made me sick, full of nasty side effects, and was long lasting. They made me a sick person taking care of sick person. 

Tatum,

I just wanted to send you a quick note to say that I love you, and that I'm thinking about you.  Sorry that you have so much going on right now.  When it rains it pours I guess.  Thanks for being such a big help for these last few months. That means a lot to me.  I look forward to spending the next 3 months with you as I recover.  You are the best...

Love always,
Dan

With confidence, I stood in our last hour of church and expressed my gratitude for the love and service others provided to my family, and me.  I expressed my love for my husband, the faith I had in God’s hand in my life, and that no matter how hard it was to help my husband go through this trial, I knew what we had gone through made us stronger, and he would someday do the same for me.  We were a team, and the work we did was a joint effort.

My eyes were wet as I spoke, along with most of the women in the room.  Most of them were my long time friends. A few had recently suffered the same fate from cancer, leaving them with personal emotions and ties to what I was experiencing.  The trials of a friend can bring an entire group together, especially when they help carry part of the load.  That is how I felt. Those around us were closer, if not only to us, but each other. 

Nothing negative could change my humble feelings, not even our congregation leader who had been disgruntle about the fundraiser from the beginning, and had boldly went to each meeting of church and publically announced that ‘the fundraiser for the Merrills’ should not have been held in the church, nor considered a church activity.  Although his need to stand politically correct could have easily upset the spirit in my heart….it didn’t.  I wouldn’t allow it to.

I let the images of my life with Dan from the previous day’s slideshow

flip through my mind as I went to sleep that night. They were reassuring to me. They brought me comfort, even if it was temporary, or false.

Some things were still unknown, but I never suspected that anything could
change the security and joy I had felt in that moment.

Were the images in my mind soon to be forgotten?

Nothing could allow me to accept that.  I held onto the smiles

in those photos and clung to the dream of a 'happily after cancer'. Little did I understand that things could still take a turn for the worse.  I would soon

find out that not all dreams come true, no matter how much you wish them to.

My ChiLdHoOd HoMe

this is the home i grew up in.

we lived in spokane, washington.

it's beautiful there.

i was 10 years old when it was built,

my family lived there over 15 years.

dad's trees.

our big side yard

perfect for 6 growing kids to play.

we lived in a cul-de-sac

which gave us plenty of room 

to play 

basketball on 

the street.

my mom loved all

dark wood trimmings.

i miss our custom home.

dug-in old school

trampoline.

 

when our house was being built,

we blended our new 

family by writing our

names in the sidewalk,

and 

in each others 

lives.

(our hand-prints used to mark our spaces, 

but have long since faded)

(tate 10)

(rye 9)

(linds 8)

(mae 7)

(ronica 6)

(1987 was the year we moved in)
(dal was born 2 years later, 

blending our family even more)

Surviving Cancer, My Story Part 20: New hand

 Part 20: New hand

It felt like Dan was in the hospital for a long time after his surgery. What they had done to his hand was extensive.  His reaction to the pain medication was just as concerning.  Any time he ate or drank anything, he instantly threw it up. He threw up every hour for a solid week before anyone connected his lack of tolerance to the combination of strong drugs being pumped through his veins for pain.

 (Dan's hand right after surgery)

I traveled back and forth between home and the hospital, where Dan was learning to deal with the knowledge that his hand was permanently changed.  The large bandage running from his fingers all the way down to his elbow made it easier to avoid the reality of what was really underneath it all.  His fingers were individually wrapped.  The surgical bandage tape was unique in the way that once it touched your skin it stuck and clung, preventing movement without pain.  His new hand was now the focus of everything.  What does it look like?  What does it feel like? How will this affect Dan's every day life from this point forward?  Although unspoken, these questions were the only things going through our minds.

The bandages prevented questions from getting answered right away. It was obvious that his pinky finger had suffered the most trauma from the surgery.  It curled into a sideways hook, and seemed to nestle against its new neighbor.  Color in that finger seemed to fade a few days after surgery.  I complained several times before a nurse finally agreed to unwrap the tight bandage to see if everything was okay.  As she peeled away the gauze a large black bruise showed itself, running along the entire side of the finger.  The bandaged had been wrapped too tight during surgery causing blood flow to become minimal to the baby finger.  Color began to come back as well as sensation and pain. 

Little nuances like these caused us great stress in the beginning before we had a chance to know what we were really up against.

As Dan finished physical therapy to regain balance, he began to feel good enough to come home.  His tests showed his blood cells hadn’t been recovering the same as they had in the past.  He would need 4 pints of blood, two more blood transfusions before they would release him.  It was hard for me to watch someone else’s blood being pumped into my husband’s body. As grateful as I was for modern medicine, along with the gift strangers were giving to the cause of Dan’s red blood cells, I had to be away while he got them. 

The next few weeks consisted of eating, playing with the kids, and engaging in fully conscious conversations before we went to bed.  His last round of chemo was over a month behind us, leaving his body and his mind alert, and his own.  It had been months since we laughed and joked with each other. I couldn’t imagine going back to the hell we had just escaped.  Our appointment with Dr. Randall would be the only way we would know for sure how the surgery and treatments had affected Dan’s cancer, and how much more we would still have to do.

(Dan, and Cole, sometime after surgery) 

Dan began to put on weight, and started to take small walks up and down our street.  An 8-pound weight gain was our most exciting news when asked about his progress.  It felt silly, as if we were announcing what our baby weighed when he was born. 

“Are you nervous?”, I asked Dan as we drove to the hospital to get his bandages removed.  It was the first time we would get a chance to look at the damage, see what was truly cut out, and what was left.

“A little bit”, he admitted, “I’m more excited to get this huge bandage taken off.  It’s hot, sweaty, and I can feel my skin peeling away everywhere underneath.  It’s uncomfortable.”

He spoke unemotionally as he drove.  He turned to me and asked me for the first time since we started treatment how I felt, “Are you nervous?”

No one had known how I truly felt throughout the entire cancer journey, much less my husband.

It took me off guard that he asked.  I paused before I answered with the truth, “a little bit”. Between his extremely bruised baby finger and the 20% that was cut out, Dan had experienced several side effects. He felt sharp shooting pains from the top of his fingers down to the wrist, probably nerves of the missing parts trying to find new connection. His hand would be full of stitches, swelling, and bruising.  I knew it wasn’t going to look the way we had previously pictured it in our minds. The last 6 months hadn’t prepared us enough for the change.

I watched my husband talk as if none of what we had just gone through was reality, but just a horrible story we had made up.  The only evidence was his hand and skinny bald body.  He seemed to be coming out of the emotional dark hole he had been in.  After the roller-coaster forced upon our marriage during our cancer battle, I was more fixated on the recovery of our convictions for one another than the one for his hand.

 “I’m really glad you were there at the hospital when I woke up”, he said, “It was really good to see you there.”

He had no idea that these small words were confirmation I needed.

It was imperative to know that he thought I had done a good job of taking care of him.
 

As we wait for the bandages to be removed from Dan’s hand, our nurse Cherry gave us the news that the tumor was downgraded from ‘high grade’ status to ‘low grade’.  If the tumor board had made this decision based on how his tumor looked once they removed it, it was because the ‘high grade’ cells were 100% dead.  Six months of built up stress waiting to hear these words, were suddenly released.

A second nurse grabbed some scissors and began to cut at the large bandage on Dan’s hand.  I could see the excitement on his face.  She began to peel away the casted outer layer she had just cut, only to find other layers of gauze, cotton wrapping, and tape.  His face winced as she picked it away from his skin.  It was obvious that it hurt.  As the physical pain was felt, the emotional shock began to take it’s place as first vision of his hand emerged.  He pulled his good hand to his mouth in a fist, gasped, and looked away.  The nurse could see his anguish.  She stroked his arm and asked, “Are you okay?” She began to reassure his obvious fears, “I know it looks bad right now, but as the swelling goes down and the muscles in the palm of your hand get built back up, it will take on a more natural look.”

(Dan's right hand,after the initial bandage was removed)

Dan looked at his hand again, and from then on never looked away.  He became fixated on it, stretched out in front of him, a part of his body, whether he like it or not.  It was a lot smaller than either one of us had expected. He tried to move his fingers. The pinky lay still, he had zero control over it.  He looked nauseated at the new realizations. The nurse instructed him not to move his hand until he had permission from the doctor and she got up to go get him.  Dan couldn’t take his eyes off his hand. He was speechless. I saw his silent panic.

His head swayed back and forth behind his fist, still covering his mouth. “Oh hunny!”, he mumbled as if he were talking to himself, “it just looks so weird….i didn’t know what it was going to look like.”

I knew he needed my reassurance. “Look at me”, I told him.  He seemed to not hear me. He didn’t move.  “Look at me”, I said again more firmly.  He allowed his eyes to leave his hand and looked into mine, as I spoke to him with absolute confidence, “It’s okay… It’s okay!”

He repeated one word, “okay”, and then grabbed the towel the nurse had left him and began to wipe his arm.  The cast had been wrapped so tightly that parts of his arm were lightly bleeding, the other parts covered in faint iodine, and scabs.

(first movement after surgery)

While he did this I looked at his alien hand from where I sat, trying not to draw attention back to it’s deformed appearance.  Logically I knew it could look worse, and I was confident that the surgeon had made his hand look as cosmetically good as possible, considering all that had to be removed. There was undoubtedly more emotion connected to what the look of his hand represented opposed to what it actually looked like upon first sight.

 I began to break the silent streak in the room by telling Dan in a less serious tone that as soon as the swelling went down and the stitches were taken out it would be hard to notice at first glance that anything was different from a regular hand.  Dan needed all the positive reinforcement he could get at that moment.  No matter how scary his hand looked I was committed to telling him otherwise.

Over 30 outer stitches began at his wrist atop his hand and roped around the top and down to the bottom center of his palm. Where they held the skin together, there were large amounts of peeling, and small scabs.  Any weight placed on the hand could rip it right open.  His palm was now void of the middle indenture every hand had.

As our team of doctors and surgeons came in, he still couldn’t stop looking at it.  He held out both of his hands to compare.  One healthy and free from restriction, the other deformed, skinny, and lifeless.  Dr. Randall looked over each part in detail and confirmed that it looked amazing considering.  He prescribed him to rest his hand, put it into a secondary minimal wrapping, leaving the fingers exposed.

Dan was to manually stretch his fingers several times a day in effort to gain the first stage of mobility back.  Before we left Dr. Randall gave us the good news that we had beat the 90% goal of tumor cells killed.  Although low-grade cells remained alive through the treatment, the most dangerous high-grade cells that had been killed off moved Dan’s cancer into the stage we wanted it to be in.  Even though he was scheduled for 2 – 4 rounds of post surgery chemo, we were grateful it wouldn’t be anything near the 16 rounds it could have been.

That night we lay in bed and talked about the day’s events.  “I was overwhelmed when they took the bandage off”, Dan admitted, “they cut a lot more out that I thought they would.”  He continued to tell me how freaked out he was at his alien looking hand, and was only able to focus on the reality of everything once they had re-bandaged it. There was a certain safety behind the bandage of something ugly, something ashamed of. No one need know the details or complete truth of what was going on underneath.  Dan wore the sock and bandage to hide his hand from scaring our son, our friends, and himself.  He was afraid of the reactions he would get from revealing the truth of what it actually looked like.

Dan’s hair was starting to grow back a little by this point.  Peach fuzz made his arms and legs itchy, and tickled my face as he kissed me, from his upper lip.  His body was slowly trying to recover from all that he had physically been through.  He was starting off in a far worse state this time around from when he first started chemo, and it both concerned us.  Instead of 200 pounds, he was barely at 142, a weight he hadn’t been since middle school. 

He told me a story from before his surgery, at his shock when discovering his lowest weight. He had gotten out of the shower and looked in the mirror.  He didn’t recognize the skeleton he saw. He was so thin he could hardly believe it was him that he was looking at.  His shoulder blades poked out like wings on his back minus any muscle or meat attached to the bones. We were both halfheartedly laughing, mostly to keep the pain of sadness from creeping in while our minds envisioned the thought.

 Chemo can do a nasty number on the body. It’s strange to realize all the damage it can do when at the same time it’s power against a mutation in cells has an effective rate of only 50%.

We talked over the factors of whether he would be able to do that again.  The side effects alone put concern and doubt in our minds that he would be able to physically survive 4 more rounds.  Whatever it turned out to be, we were happy to be where we were at the time, past the hurdle of amputation.  It was all we had been working toward for 6 months.  The surgery was over, the cancer out.

(most cartoon characters have 4 fingers instead of 5)

Our conversation turned to funny business as we joked about his hand looking like a cartoon character’s hand, with only four fingers.  We laughed about how his hand would look in his gloves. I offered to perform a “removal and stitch” job to make them customized for his fit.
Laughing about cancer was far more healing than crying about it had been.

The following days as the “new hand” was introduced to Cole and into our home great lengths were taken to let Dan know we loved him AND his new hand, no matter what it looked like.  Our son had witnessed some horrible things as a three year old, but always acted like he understood what his dad was going through and showed him empathy, and love. 

A counting game between the two at bedtime became a way for them both to accept the change.  One to five is what Cole would count on his hand, while he counted his dad’s right after. “One, two, three, four”, he announced as he took Dan’s hand and held it up to his comparing the difference.  He blew on the stitch line, kissed it better, and offered a bedtime prayer, blessing his dad’s broken hand.  He became so protective over his dad’s feelings, and hand, that he saw it as his personal quest to make sure it got better, even if it meant telling his dad not to touch his own hand. He was as desperate to get his dad back as I was to getting back my husband. 

(Dan, Cole, and Ethan)

 We both had been missing an intricate part to our hearts, leaving our happiness incomplete.  We had centered everything in our lives around making Dan better.

If he were better, our family would be too.

Living life without him was nothing our family could consider.

As my young son found things around the house and asked me to help him bandage his own hand, I saw that what we were going through as a family was teaching him lesson of love and empathy, lessons he probably wouldn't learn at that age otherwise.

I wanted to believe our whole family was learning this lesson together.  I had been told a lot over that year the well-known phrase, ‘Whatever doesn’t kill you makes you stronger’. I had never taken that quote so literal as I did while fighting the battle against cancer. I was looking forward to the part of our journey where the bonds we had as a family became stronger.  After all, the strength my young family deserved, I imagined, would come because we conquered this trial together.