Surviving Cancer, My Story Part 12: "I look like a cancer patient"

I look like a cancer patient

After people got the word we were back from the hospital we were called on by several visitors, some scheduled and some unannounced. Details began to blend and blur from that moment on.  Only significant changes and upsets scarred my mind from that point on.  I was in the thick of the maze and my goal was just to make it out and journey to a time where I could look back on what we were going through and be able to say, ‘that was hard, but I came out still standing’.

Meals were brought to our home several nights a week by members of our church congregation accompanied by well wishes and inquiries of the latest cancer updates. I felt overwhelmed but knew going through a public battle was not an easy thing for people to ignore.  Cancer makes everything feel awkward.

Dan’s parents were still in town for one more day and called to say they were coming over.  My home hadn’t been cleaned since the ordeal from our first diagnosis.  As an OCD neat freak it was embarrassing to have anyone, especially my critical in-laws over to see piles of unfolded clothes and toys not put away. They arrived and I had hoped the visit would be short.  Dan had only been home for a few days and was physically unable to leave our bedroom yet.  The combination of non-stop vomiting and zero food consumption left him with no physically ability to get up and walk around.  Sleep was his only method of recovery.  I had taken on protector of that recovery time and made sure any noises in the house were limited to whispers and kept the kids outside playing as much as possible.

“Will and I have decided that we will come out for Dan’s treatments and take him to the hospital.  We will take things over from here and we’ll let you know how things went up at Huntsman when we bring him back”, Marjorie said as she stood on one side of my dining table holding the chair under her hands.  Sitting on the couch trying to remain calm I felt the knot from the center of my chest rising to the top of my throat.  I wanted to reply as casually as I could.  I stood up, faced here, and began to approach the other side of the table.  My father in-law, always a second thought shadow to his wife stood there with a blank stupefied look on his face.  I could tell he didn’t make the decisions in their relationship but that he knew he better support them if he wanted to remain a good rank to the captain.

“Thank you Marjorie, but that won’t work for me”, I replied.  In conversations with my father about her past attempts to bully me he had advised me this simple phrase to get out of every demand she made of me.  It was polite and simple; surely to leave whomever it was being said to without any response at all.  “What will work for me is visiting Dan while he’s at the hospital or in between treatments if you prefer.  It’s been really hard taking care the kids all by myself and I would love to have your help.”

I knew she had no desire to do anything with my kids.  Her nurturing instincts left when her kids had outgrown needing mothering and left her an empty nester.  The very suggestion would give her reason enough to abandon her duel to be in charge.  I knew I would win and we would have less conflict that wasn’t wanted.

“NO!”, she persisted, “there is no need for you to be up there with him, I am his….” I cut her off mid-sentence for the first time asserting my right to feel respected, “I understand what your saying, but this won’t work for me, but thanks for the offer.”  I turned and walked down the hall toward the bedroom where Dan was.  My body was shaking not only from fear of standing up to such a threatening woman in my life but from the anger I felt from her dehumanizing me as someone who was going through something as well.  I was also a girl whose husband was dying from cancer. 

I could hear her getting upset in the other room complaining to Will as I closed the door to the bathroom.  I shrunk onto the floor, just as Dan did when he learned his life was about to change.  Our bathroom had become a place to hide away, not only from scary in-laws but also scary diseases and anything bad.  An innocent child like gesture of hiding gave comfort and space to regroup thoughts and regain courage to face the things that scared us most.

I sat in there for more than 20 minutes before I felt composed to go out and play ‘grown-up’ to people who should have allowed me to cry on their shoulders like a small child.  Dan forced himself awake for a couple minutes to say good-bye to his parents.  It was a difficult time for them and I both.   I wished for things to be different.  I wished to wake up and have this all be a bad dream.

My in-laws left town and Dan started to feel better. Food was still far from his mind but he had stopped throwing up every hour.  He tried to eat but after one bite of anything he quickly rejected whatever he thought he could handle.  His appetite gave us no concerns, as we were just grateful he was feeling better.  I was relieved to have him awake and wanting to rejoin any area of the house besides our bedroom.  Things were starting to feel as though he just had a really bad flu bug and it was now over.  We had been home for a week and a half by that point and color was coming back to his face. 

He wanted to take a shower and maybe get out of the house.  We talked about a small walk.  My mother had arranged for us to take Cole to Heber City to ride Thomas the Train, his obsession at the time.  Our planned outing was for the next day and Dan wanted to test out his sea legs and make sure he would be able to make the long trek up there.  Someone from church had come over to sign our weekly food voucher and to check on us while he was getting clean.  I don’t remember the subject matter of the conversation we were having, only what happened right before he left.  Dan came out from the back bedroom.  He seemed aloof, not looking at anyone in the eye.  He barely said hello as he entered the room and promptly sat himself on the furthest edge of the couch looking down to his lap. He was fully dressed, but his face was a bead of sweat and his hair dripping wet from the shower.  It was the oddest behavior.  I acted natural as if I didn’t notice that something was wrong and ushered our guest out with a ‘thanks for stopping by’. 

“What is wrong”, I asked turning his direction. It took me asking him several times, coming to the couch, and sitting right next to him before I could get him to look up.  He had panic on his face. “What is it?”, I pleaded for him to tell me.

“Look!”, he said as he lifted his arm up and ran his fingers through his locks of blonde hair.  From the top of his forehead down the back of his neck his hand fell to his lap with a fist full of hair.  I sat looking at it in disbelief for a few minutes.  He opened his hand and the hair fell to the ground.  Tears strolled down his face as he sobbed, “I don’t want to look like a cancer patient!”

I moved closer and held him while he cried.  I reassured him it was all right because he ‘was’ a cancer patient, even though I felt the same as he did inside.  It’s one thing for your family and friends to know you’ve got a nasty disease, but it’s another to have every stranger who sees you on the street know as well.

A plan was devised to keep him looking normal until we came home from Heber the next day.  We wouldn’t touch a hair on Dan’s head, not comb it, nor wash it, nothing.  Dan needed to feel normal just one more day. 

When I opened my eyes and rolled over to wake up Dan the next morning I saw clumps of hair everywhere.  As he lay sleeping I gathered up as much hair as I could and ran to the bathroom to dispose of the upsetting evidence.  He was still shocked at how much he saw on his pillow when he woke up, despite my efforts. My husband would soon be bald.  He complained of how badly his head hurt.  No one told us losing his hair would be painful as well.  The roots of the hair had been severed leaving the hairs in his scalp disconnected poking through the scalp with no inner support.  Any touching he did to his head moved the strands in and out of their individual placement stinging like needles entering the skin at every point.

The train ride began and Cole sat next to his dad.  I watched the breeze from the open cabin blow through Dan’s hair.  Strands easily blew away like a dandelion from a gentle breeze.  We didn’t talk about cancer and pretended to have fun with our kids.  All the other families were genuinely carefree and happy; enjoying a relaxing outing.  

We arrived home just before nap-time and had prepared a sit down talk with our young son.  We sat on the couch and told him that something was going to happen.  The extent of his knowledge was that his dad was sick. “You know how daddy goes to the hospital to get special medicine?”, we asked him as if we were teachers at a school.  He nodded his head looking directly at Dan.  He still didn’t talk very much but we knew by his eyes when he understood what we were talking about.  “Well that special medicine is going to make daddy better, but it also is going to make daddy’s hair fall out.”  We knew he was seeing his dad with hair before nap-time and after he woke up he would look different.  Our effort was to prevent scaring the poor kid or giving him cause for upset. “See look!”, I said as Dan grabbed as much hair as he could and yanked it out.

Cole looked shocked.  He tugged as his own hair to see if he’d get the same result.  “No”, I said grabbing his hand and leading it to his dad’s scalp, “only daddy’s hair, because of daddy’s special medicine.”  I helped him make a fist around a clump of hair and pull it gently out. I felt sick inside, as I played it casual for the sake of Dan and my son.  “When you wake up daddy won’t have any more hair, but he will still be daddy”, I said in my best somber calm like voice. Cole seemed to understand enough of what we were trying to tell him.  Dan walked him down the hall and put him in his bed.  I retrieved my clippers and sheers from my old work bag.  I knew from being a professional hairstylist that I was capable to rid the remaining hairs from his head though emotionally I didn’t feel ready at all. I started with a number 2 buzz.  Without a ‘cancer patient losing his hair guide’ I had no idea how short to take it before letting nature take over the rest.  “Shorter!”, Dan commanded.  Reluctantly I  snapped on the number 1 clip and buzzed it away.  It didn’t even look like there was anything left.  I was strictly his hairstylist now and I stood behind him with the clippers waiting for more directions.  If I were to switch to being his wife I would have to walk around and look him over from the front.  I sat in disbelief that I just cut off all his hair while he looked in the hand mirror and touched his head.  “Take it to the scalp”, he said. “I don’t want to”, was the first thing that blurted out of my mouth in response. “Do it!”, he commanded.  I was mad he was being so tense to me, but I was clearly more affected by the anxiety of the situation.  I shaved his head to the scalp, with no guard on the blade. I turned off the clippers, set them down on the counter, and swiftly walked to the back bedroom without looking back at him.  My heart was racing and I didn’t want to act upset.  I let the natural rhythm of my heart return and chocked the lump in my throat back down before I went back to the kitchen.  There would be no crying from me I decided.  He was still sitting in the chair, the same as when I left.

 The hairs in his scalp were like needles imbedded in the skin, burning at every touch.  “They have to come out!” he said, as he put both his hands around each side of his head in pain.  I reacted on autopilot in devising a plan to get the stubble out.  I retrieved a sticky roller and began rolling it back and forth across his head.  It was working, trapping the hairs to the paper and pulling them out quickly.  We used up two refills to get them all.  It was done.

He went to the bathroom to inspect the newness in his look.  I swept up the last of his hairs and threw them in the trash.  We met back on the couch and sat numb by what we just did.  ‘What next!?’, was all my mind could rehearse over and over again.

Cole emerged from his room with a wondering look in his eye.  They widened when they spotted Dan sitting there on the couch next to me.  He walked over to me with his arms reaching up asking me to pick him up in my lap while never averting his eyes away from his dad.  He sat staring at him until I said, “that’s daddy.”

Dan reached over for his son and took him out of my lap and into his own.  Cole squirmed and reached my direction, looking desperate for me to rescue him. “No”, Dan said and grabbed him desperately trying to make him look up his face. Cole’s only reaction was to assume fetal position and bury his face into his own arms. “It’s me buddy, it’s daddy”, Dan whispered trying to sound convincing. Cole never looked up.  He was in shock as we all were.

 Dan looked disappointed at the rejection.  I knew Cole’s feelings were temporary, but were still hard for me to watch. I turned on a movie about Thomas the train to alleviate the stress.  Dan and I escaped away to our room where we lay down on the bed and look at the ceiling.  Our brains were running serious thoughts through them non-stop for over a month now and there were no amount of words to accommodate all that could have been said. “My son doesn’t know me”, Dan whispered softly to the sky, staring out the window next to our bed.  “Yes he does”, I disagreed, “this is just hard on him, hard on all of us”.  So many changes that meant so many things never left anyone feeling certain or secure about potential outcomes to those changes.  Dan wasn’t the only one who had cancer.  We all carried the burden of the disease and the harm it threatened to cause us.  I began to realize that none of us would walk away from this unscarred.  I would have to take things one day at a time and hope that our young family would have the best possible outcome to things I could never have imagined would be factors in this game of Russian Roulette.