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.

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.

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.

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.