AcDc DaNcE PaRtaY

sprout two loves to dance.

this was not coreographed, 

nor rehersed.

this baby of mine has 

 spontaneity, and fun

every day, 

demonstrated in 

this impromtu 

dance.

Surviving Cancer, My Story Part 15: Chemo Brain

Part 15:  Chemo Brain

Driving up to the appointment Monday afternoon I was anxious to hear what the ‘Tumor Review Board’ had decided about Dan’s MRI results.  With Dan on the fence of whether the chemo was working or not I needed to hear solid news. If the chemo was working then we would be back up to the hospital Wednesday for round three, which was sure to be brutal.  If the treatment were not working then an amputation would be scheduled right away, and he would surely loose more than just a finger, possibly his whole hand. I had accepted an amputation as the end result, but wasn’t ready to accept him loosing the that much of a vital organ.

 We made our way down the long corridor to the Sarcoma wing of the hospital. Our team of doctors took about an hour to gather up before they came in our room with good news.  “The chemo seems to be working”, Dr. Randall said, “we can’t know everything for sure until we are in surgery, but the tumor has stopped growing so we can assume that cancer cells are being killed”.

Finally we felt a sense of relief.  He went on to explain that although they were confident the treatment was effective, they did not know which grade of cancer cells were being killed off.  They gave statistics on our case, only to be determined during the surgery. There was no possibility of knowing more before then.  Was the chemo killing the high-grade cells, or the low grade? That was the question.  High-grade tumor cells are far more dangerous and are the threatening nature of cancer as it enables for traveling through the body where the low-grade cells just sits and spreads from the source point.  We needed 90% of the high-grade cells to be dead inside the tumor.  If we were that lucky we would only have 2-4 post surgery treatments and some minor localized radiation. However if only 80% or less were dead, 12 more rounds of treatment would be required.  As weak as Dan had already become I knew he wouldn’t survive the treatments even if he survived his cancer that long.  We needed the 90%. 

I put all the future case scenarios in the back of my mind for the time being.  It was too much stress that I couldn’t afford to add to my already full list.  We were moving forward with the chemo and would be back up at the hospital in 36 hours for round three.

Between the good news and the hot sunny weather Dan acted like he was feeling a lot better.  He hadn’t spent any time with our son since he had been sick.  Cole was used to his dad taking him on outings twice a week, including swimming. He felt the sting of separation the cancer was putting between them. How could a three year old understand that it had nothing to do with him personally? I pulled his tricycle out of the garage and Dan his mountain bike.  Cole peddled as fast as he could down the alleyway behind our house.  Dan peddled slowly following him just enough to say, “don’t go too far, turn around little boy.”  I saw the happiness on Cole’s face. They resembled each other, both with pale translucent skin and freckles.  Chemo affects the pigmentation in the skin, making Dan’s ability to attract baby freckles strong.  All of our summer days should have been this way.  We ended our activity with popsicles in the back yard, enjoying the sun.  I was happy to see Dan not lying in our bed or attached to the couch as he had been the last several months.  I wished that could have lasted longer.

He finished his third round of chemo the same as the first two, sick and miserable.  I knew what to expect when he came home from the hospital.  The symptoms weren’t shocking to me anymore, even though they still shocked those that came to drop off dinners or pay courtesy visits.  Dan had become so withdrawn that it was eerily noticeable.   I had been in a state of non-reality since the whole thing began, mostly so I could continue on in our morbid quest with the positive attitude that was just as necessary in making my husband well as the treatment itself. 

People always wanted to know how the progress was going, and secretly wanted a glimpse at the man who had cancer; undoubtedly looking scary.  After round three Dan assigned himself to the far end of our leather couch with 2-3 bins and nothing else.  He would have me cater to his needs from there, replacing bins, and helping him readjust his body to prevent sore muscles from lying down for so long. He was in no state to get up and move around, or even try to function as a fully ‘living’ human being.  Although his appearance was obviously shocking to others upon first sight, I had accepted it without much thought, even though I noticed him more of an empty shell this go around.  His eyes were much more sunken in, dark and distant. He had lost more weight, down 60 pounds.  I would put on a movie, or offer to read to him but his eyes never focused on anything, not even me anymore.  I would give verbal updates about his condition and the treatments to our friends visiting.  A look of shock always across their faces as they watched him just over my shoulder in the same room.  I remember glancing back at Dan and then turning back to our neighbor who wore an expression of horror as she listened to me talk but never took her eyes off Dan.  I stopped mid-sentence in the update and clarified that he couldn’t hear anything we were saying, “he’s awake, but he’s not totally in there”, I explained as a matter of fact.

Hearing myself say that now sounds as haunting as it would sound to others I would say it to, but then it was nothing more than part of a story.  The story I was forced to tell, the story that wasn’t real, and therefore wasn’t to be feared.

Dan had chemo brain. The medicine had been killing off just as many healthy cells in his body as deadly ones.  I was living with a man who was slowly dying.  Half alive and half dead he was a body on my couch.  His eyes were open but nobody was home.  He would stare off into the distance in the direction of his view but I knew he wasn’t looking at anything. He was lost inside himself. 

A home nurse had been coming to our home a couple times a month to train me on new things to keep Dan’s port sterile and functional.  This time he would train me on intravenous injections and programming pumps.  Dan wasn’t keeping anything down, and had abandoned all efforts to eat anything at all, taking his already thin body to a dangerous weight.  The pills to alleviate these symptoms came up as soon as they were swallowed leaving no other options than to pump them straight into his system.  I didn’t want to do the needles but had no choice. 

My boys watched me practice programming the portable pumps while referring to paper instructions and hooking them to high levels of IV potassium fluids.  In between bags I would alternate drawing drugs into syringes and shooting them into his tubes, and watch the medicine travel up toward his heart.  Credits of a ‘nursing degree’ should have been awarded to me for all the things I learned and did for Dan. I always wondered how nurses could do it all day long.  Seemed like such a horrible job, to care for sick people.  What I slowly learned from taking care of Dan was that my love for him was increasing.  He was a hollow man at this point; his lack of connection toward me became more obvious. I only felt my love for him deepen as I cared for him through acts of service. It was clearly service and not just love that I was giving him.  You cannot serve others without developing love for them. I had already loved him as his wife, but there is something about loving and caring for someone through a near death experience that can’t be described.  It’s unselfish, emotional, and bonding.   I only felt this way for two others before I added Dan to the list.  I loved my husband when I married him, but it was not comparable to how I felt about my children when they were born.  I felt protective over them, infatuated with them, obsessed with the little being that I had nurtured and grown just shy of a year in my own body.  Only a mother can understand the immense addiction to the well being of her child, and the undying love they feel toward them as they care for them in stages of their growth. 

Testing on his blood cell counts were now conveniently done at home when the 'home nurse' came.  The next day we received a phone call from our doctor instructing us to come to the hospital for a blood transfusion.  Dan’s red blood cell count was too low.  We had never been to the general chemotherapy wing of the hospital.  It was outpatient and most cancer patience who got chemo received their treatment for 4 hours only. They were assigned to this area where they could read a book, or watch a movie while getting their drugs and then go home or back to work right after it was over.  They brought Dan to one of the over-sized chairs and hooked him up to a bag of blood.  We both felt faint even looking at it.  I left the hospital and promised to return in 4 hours to pick him up. Two hours into my short break the hospital called me and let me know they had admitted Dan to the hospital and sent him back up to the fourth floor because an infection set in from the transfusion and his white blood cells were now dropping to a dangerous count.  It seemed like every complication that could be thought of Dan would get.  I was worried and frustrated at the same time.  I was ready for this whole thing to be over.  I was going through the motions of a caregiver and I knew the wear and tear was starting to affect me and my ability to cope.

When I got back to the hospital Dan was shivering in his hospital bed, he had a fever, obviously in pain.  I tried to comfort him as I had done before but he angrily pushed me away, telling me to leave him alone.  At a loss of what to do I began to take things personal. His behavior had become so passive aggressive after round three that I never knew what I would encounter in dealing with him; Dan or his evil twin.  I tried to talk to the nurse about the situation. She was less than sympathetic to the emotional strain caused by all these complications.  Her loyalties were to the person with the physical cancer and told me that he probably didn’t want me at the hospital and I should just go home.  I had never met this nurse before and was shocked at her candor.  I wanted our regular nurses I had come to know more personally who cared for us during his treatment schedule.  They were kind, patient, and understanding to the shocking changes care-givers are sometimes forced to see and deal with. They let me know I wasn't alone in feeling this way. This particular nurse that day seemed to support Dan’s subconscious theory that I was the cause for his cancer and therefore a big thorn in his side that needed to be removed. Emotional abuse is common for caregivers to experience from their cancer patients but I couldn't reason that this is was what was going on.

Before going home I left Dan’s room and went to my favorite spot in the hospital, my sanctuary away from my life.  The big museum like room always gave me comfort.  I sat for a couple minutes reviewing what was going on between Dan and I making sure I wasn’t inventing something that wasn’t real when an older man wearing shorts, a Hawaiian shirt, and a baseball hat came over and sat next to me. He had been circling the halls several times. I recognized him.  He was another person I saw at the hospital every time we were there. “This little baby of yours sure is a looker”, he announced with a large grin on his face.  He told me he just became a grandpa a couple days earlier.  The excitement was apparent with how much attention he was giving Ethan.   I was sure he was visiting his wife for as much time as he spent at the hospital. I introduced myself.  He baby talked Ethan for a few minutes more before he told me his name was Larry, and that he had Leukemia.   I couldn’t believe he had cancer.  He looked so happy, so healthy and vibrant.  Larry’s type of cancer made it too dangerous for him to live outside of the hospital, so he was there full time, with no real plan to leave until his white blood cells stabilized at an acceptable number.  It had been 6 months so far with no luck for him.  He never wore hospital clothes and frequently walked around like he worked there, to keep his body active and his mind busy.  He saw my upset and after talking to me explained that the nurse I dealt with earlier was the worst one of the floor and not to let her get me down.  He also told me cancer was a crap-shoot and you never know how it’s going to turn out, “no matter what kind of a person you were before, good or bad. It won’t determine your fate through a nasty disease you can’t control", he explained. It made sense to me. I heard nurses in the past tell me stories of kind patients, good people who would come to Huntsman and die from their cancer when it was some of the meanest, nastiest people who would come for treatment and be cured and go on to be mean and nasty; living just as miserably afterwards as before.  It didn’t seem fair.  People also were known to change completely after experiencing a taste of death and that is what I felt was happening to Dan.

Larry became my friend when we went to the hospital and I wished for all cancer patients to be more like him.  His family lived out of state, he hardly had visitors, but he had what he needed to get through his lot in life.  He had a positive attitude and a grateful heart.

The fourth of July was a couple days away.  Dan’s birthday was the day after. If he weren’t released from the hospital from then we would have to bring some celebration to him.  If that were the case I planned to invite Larry.  He radiated happiness even in an unhappy circumstance.

I picked up Cole from the sitter and took him home to an empty house.  He ran to the locked door and began banging on it with his fist.  “Daddy, open the door, let me in!”, he shouted anxiously.  He had been away all day and expected his dad to be home when he got back.  I unlocked the door and pushed it open.  He saw the darkness and knew he wasn’t there. “Ok mongie”, he said in his 3-year-old language. 'mongie' was his term for ‘mommy’, “we can call daddy to say good night?”

“Ok”, I replied as I looked down at him and grinned.  I picked him up and held him in my arms. I put him down to bed while talking about daddy’s birthday that was coming up and asked him what we should do to make him feel special.  Life for Cole needed to go on, even with my sadness in feeling our family was falling apart.  I focused on my husband being well enough to come home for the holiday and his birthday so we would have a couple days together at home before it was time for round four.  Things felt like they were speeding up, heading for the surgery faster than they were before.  We just needed to get past the fourth round of chemo.  He would get a break for his body to gain strength for the surgery and I was hopeful our relationship would regain strength during that time too.

fEsT oF CoRnBelLiEs

punkins and halloween mean

play time at point of 

thanksgiving...

batman

 

robin

Surviving Cancer, My Story Part 14: The Damage Is Done

Part 14: The Damage Is Done

Dan's stay at home was short lived as he acquired a fever, mouth blisters, and couldn’t stop vomiting the following week.  Anything over 105 temperature and we were to rush to the emergency room.  His fever at 108 had us worried.  We drove to the closest hospital.  Luckily when they knew we were getting our treatments from Huntsman they called over there to reserve a bed for him.  No one could give him better care than a hospital designed especially for cancer patients dying from overdoses of chemotherapy.

Going back to the place you just left less than a week ago was hard to do.  It was another routine of calling neighbors and friends to watch Cole on an emergency basis to spare him anxiety, Dan the pressure of being ‘daddy’, and me the freedom to chauffeur him around. The shock of how many people would say no because they needed to mow their lawn or it was just plain inconvenient to them was wearing off and it became frustrating.  My mother who was an hour south of us and my aunt an hour north were the only babysitters we could ever find.  The amount of driving I did between my home, the hospital 40 minutes away from my house and our distant ‘sitters’ was astronomical.  I spent more time in my car with my thoughts than anyone dealing with what I was should have to do.

 The nurses spent the rest of the day managing Dan’s fever.  He was admitted to the hospital without a projected release time.  ‘We will see how it goes’, is what we would always hear every time we were up there.  It was like being in jail.  You get arrested, put in a holding area, and are told to wait and see what happens next, or see what the judge will say, ‘yes you can go’, or ‘no, you will be staying here for awhile’.

His mouth was full of sores, making it hard for him to swallow or talk.  He was also dehydrated and immediately hooked up to IV’s and bags of fluids. The sores in his mouth were diagnosed as thrush, a fungus in his mouth, common for chemo patients.  He was administered IV antibiotics to clear it up.  Although we weren’t at the hospital for a round of chemo he was suddenly hooked up to just as many bags as he was a week ago for his  last treatment.

The fever didn’t come down enough to let him come home.   He would be spending the night.  I hated to leave the hospital without him.  I wasn’t prepared for him to be kept overnight and had nothing packed for the baby or myself.  While Dan sometimes pointed his anger for the situation toward me, I pointed mine toward the nurses and hospital for taking my husband away from me.  Although absurd, my subconscious believed that they were giving Dan more reason to be dramatic than necessary, and catering to his every cough, whine, or look of discomfort. I was sure they were encouraging him to act sicker than he might actually be.  The mind can be a dangerous place during the unknown times.  I just wanted them to put a band-aid on him, pat him on the head, and send him home to be with his wife.  

The following day was Sunday.  Dan was still very sick. I was desperate for him to come home.  Some members of our church offered to come up to the hospital to give him a blessing.  I have always had a lot of faith in priesthood blessings and the power they possessed to heal the sick, and comfort the weary.  Dan was a priesthood holder and had given me a blessing when we received the word that it was cancer and were on the schedule for his first round of chemo.  His hands placed on my head along with his fathers to give me a blessing of comfort let me know that I would be able to handle this burden and that I wouldn’t be alone in my trial as long as I turned to my Heavenly Father for help.  My father in-law and Dan’s brother also gave him a blessing the same day of strength and faith to overcome the disease in his body.

I was grateful for the offer and agreed to have them come up to visit us in the hospital.  After the blessing and the two members of our church had left Dan began to improve.  A few hours later he felt well enough to get up and stretch his legs on a walk down the corridor. Still attached to his bags of fluids he pulled the IV unit with him as we walked around.  He joked about the awkwardness of having an added extension of himself but it was normal to see bald headed people toting around what looked like a giant coat hanger draped with medical tubes and fluid bags with them everywhere they went.  I was glad the blessing had eased some of his earlier symptoms and I was hopeful he would get to come home soon.

Monday morning they did some blood work and by afternoon they released him to come home.  I was relieved he was feeling better but on edge knowing we were scheduled to come back in two days for testing. 

He had so many appointments scheduled for tests that it was hard to keep them straight.  Just getting your chemo wasn’t enough when you have cancer. You have to have test to make sure it’s working and find out what other effects are going on in your body during the process.

The MRI was most important, as it would directly give us insight as to if the chemo was working or not.  Dan’s rare cancer left doctors unable to pinpoint what would surely work and what wouldn’t.  His blend of poison was just a guessing game.  A battery of tests to see what the chemo was doing to his body was next.  It was a routine of poking and prodding to see what hurts and what doesn’t.  Dan’s heart was healthy so far but his hearing and nervous system were less fortunate.  Hearing damage had set in, leaving Dan with permanent loss and a ringing that had began to taunt him when it was too quiet at night.  Numbness on one side of his body and in his back when he lay down was another side effect of the life saving drug. He had nervous system damage.

With the possibility of the chemo not working and us not finding out those results for 4 more days depression from the bad news began to set in.  The damage was already done and even if the chemo wasn’t working there was no going back and starting over again.

We would wait until the following Monday to hear from the ‘Tumor Board’ and the reviews on the MRI.  The drugs had to be working in order to continue chemo and have the best possible outcome of the amputation that was inevitable.

Sunday was Father’s Day. I made Dan breakfast in bed.  He didn’t feel well enough to eat, but let us sit on the bed with him and listen to him read our Father’s Day cards. We went to church as a family.  Dan kept his distance from everyone trying to avoid infection. He was like a new baby, with an immune system fragile to everything, unable to fight off the common cold if he were to catch it.  Our bishop announced over the pulpit for people to not touch him or come close if they were sick.  I was surprised Huntsman didn’t prescribe a human bubble for him to be placed in while when we were out in public.

We headed to Springville to get away for the night.  Dan finally ate some food from the Father’s Day dinner my parents had prepared.  He had been losing weight so rapidly that any amount of food he ate would be important to keep him healthy enough to stay on his chemo schedule.

The drive home we talked about the MRI and whether we thought the news would be good or bad.  A network of doctors from the hospital and specialist around the country would hold a meeting Monday morning called ‘The Tumor Board’ where suggestions and brainstorming would take place before giving us the word on what was the next recommended step.  The hospital was conducting a case study on Dan and it was pertinent to future science on his cancer that the smartest brains were contributing to the ongoing diagnosis and course of treatment.

“I don’t think it’s working”, Dan said as he looked down at his hand.  “Why would you say that?” I responded in shock.  It had better be working for all the trouble we were going through.  “I don’t know, I just feel a bump in my hand, I think it’s the tumor getting bigger, “he said passively, as if he had been feeling this way for a while without bothering to tell me.

My mind reeled in what we would hear the following day.  I felt nervous as I try to sleep that night. It would be hard to accept that we had already gone through so much just to find out that it was for nothing other than to find out the treatment wasn’t working.

sLeEpLeSs iN SaLt LaKe

i couldn't sleep last night/this morning.

my brain won't shut off even when i am very tired.

writing parts for my 'cancer story' made me want to finally look 

at the filming we did.  we recorded most everything and planned to 

make a short documentary about it. 

my intention is to still do this once i find someone who can convert the material to a better format and help edit it.

i haven't opened that box in four years, and never watched

what we filmed once until now.

i only watched 1 and a half of 7 tapes we filmed.

it was weird to see my boys so young, and dan with hair.

painful yet validating to watch him talk to me while i held the camera.  he spoke softly and sweet to me; nothing that he is now.  

i only watched to where my cancer stories are currently. although not surprised that my memory is identical to what was filmed, i am amazed at my ability to recall details of almost any event in my life.  

my memory is a gift and a curse.

i love knowing who i am and the details of my life,  but with the sweet memories also come the painful, sad ones that i would prefer to forget.

i'm not ready to post the details saved for future parts in the story, but the films made me miss my husband.

he is not him anymore.

he is someone else.

i have accepted this.
i have learned to be happy.

                                                                                                                                                                                                                                                                                                                                                                

Surviving Cancer, My Story Part 13: Cancer love letters

Part 13: Cancer love letters

 After Dan was hooked up to round 2 of his chemo we got out a deck of cards and began to play a game.  Somehow games had been a great distraction in our marriage when one of us was sick.  At the end of my pregnancy with our first baby, I was in so much pain I was pretty much housebound.  Dan would come home from work and set up a station of games around the bed and we would play for hours.  We were both competitive in nature, which kept us motivated to keep playing until we individually felt we had the upper hand at winning. Games were a good distraction for the hospital stay and kept our minds on superficial subject matter.

He finally looked like he belonged at the hospital. He was bald headed, and 40 pounds thinner.  His clothes hung on him like he was a teenager wearing his dad’s clothes.  His head became shiny, as all cancer patients do, with no stubble to take the glare down a notche.

The room we were assigned this time around was in the back of the hospital.  It was a smaller room, with a view of rocks on the mountainside where the hospital was built against instead of the cityscape like we had before.   It was dark and cold.  I didn’t want to be there, I longed for the comforts and luxuries my own home and bed provided me that the hospital never could.

 A hospital routine soon settled in for us. I would stay with Dan at the hospital with our baby until he was administered his chemotherapy and spend the night on the fold out couch. Depending on how Dan’s system handled the drugs I would leave during his nap the next day to pick up Cole from the various houses he was being passed back and forth between, spend some time with him and then head back up to the hospital for another night or two before bringing him home.

Dan soon gave into the drugs and fell asleep.  I tried to do the same but my mind raced with worry and stress.  ‘Is this chemo working?’ ‘It better be working.’ ‘How can I get the insurance company to pay for Dan’s treatments?’  ‘I miss my Cole.’ ‘I still can’t believe this is real’. My thoughts never settled but my body eventually gave into exhaustion.

One of the rules for cancer patients is that their guests are not allowed to use their private bathroom.  A high risk to infection made it important to keep everything sterile and hospital approved.  When I woke up I walked down to the community bathrooms and showers still in my pajamas. This was common in the morning, to see spouses and caretakers with wild bed hair, wearing pajamas, and bags in hand making their way to their ‘assigned areas’ for bathroom and shower privileges. It reminded me of Holocaust films where the Jews and outcasts were herded into separate sectors.

Caretakers of cancer patients bear so much more burdens than anyone ever realizes.  They also take a backseat to the cancer patient in all areas.  The responsibility of keeping everything together for the cancer patient lies within their hands. All responsibilities’ are turned over to them, emotional, financial, mental, and physical. Ultimately the sense of personal duty to make sure everything does turn out the way you promise and want it to becomes the central focus and an obsession to fulfill.  No one is ready to fail his or her loved one.

Dan was awake when I returned and we talked about the daily plans.  The chemo he was getting made him want to sleep most the time we were there.  Around five o’clock that night he was ready to close his eyes.  I said goodnight and kissed him good-bye. 

In the morning I took both boys up to the hospital to spend with Dan. It was Cole’s first time visiting.  He had gotten used to his dad looking different from all the other dads, and took on the changes as if they were normal.  He behaved as if others should feel that way too.  Broken hands were not weird to him, and he frequently held one hand with the other and confessed a fib to various strangers that he had a broken hand, and could magically pull his hair out. When we first walked in, Cole looked scared to see his dad hooked up to so many machines and colorful bags hooked to tubes filtering under his shirt.  He was aware of the sensitivity his dad felt in his body and was usually careful when around him.  Any worry he had soon abandoned his mind after he was able to sit up in his dad’s bed with him and watch cartoons like he used to at home.

We stayed most of the day.  We had been lacking in family time and although the circumstances were less than ideal it felt comfortable to be together as a family.  Something about being separated during a crisis makes everything seem ten times worse.

I know Dan was happy to have the boys there, but he started feeling sick this time around during his treatment and became irritated at everything.  This in combination with the chemo plus eight other medications for pain, nausea, including a strong steroid made him physically ill, emotionally unstable, and mentally unsound. I packed up the boys to take Cole home and planned to return after my mom came to stay with him to help Dan during the night. He had been snappy in his tone about everything that day toward me and open about his discomfort.  He was mad at me for his being sick.  I tried to ignore it, knowing it was the circumstances making him act this way.  Tension in the room became thicker as the time for me to leave approached.  I knew Dan didn’t want to be left behind, that he prefer to just get up and come with us. Everything in his life was out of his control.  He was tethered to the hospital by machines and would remain a prisoner there for at least another day.

I remember this moment signifying the beginning of Dan subtlety pushing me out of his life.  Keeping me at a distance made it easier to attach the negative feelings from our circumstances and shift blame of the cancer onto a liable person. He began making me the enemy in his mind.

“Why don’t you just stay home tonight since you’re leaving”, he said as he turned his head away from me like a pouting child. 

I was too annoyed to let my hurt feelings control my emotions, “is that what you really want?” I asked him.   Although I knew that wasn’t what he wanted, a crying hungry baby and toddler jumping on me kept me from playing mother to his childish game.

“Yep!” he replied coldly and pursed his lips together.

I leaned over his bed to hug him good-bye.  I knew he was mad at me, and deep down inside I was mad at him.  He was making things harder on me than they already were.  He loosely threw one arm over my back with his head still turned to the side as if he were being forced to hug his worst enemy as punishment for fighting with them.  When I was younger my dad used to make us hold hands and walk half a mile down the road with the sibling we were at war with.  It was torture.  I knew Dan needed someone or something to blame for the misery he was going through. I hated that he picked me to be that ‘someone’; even though most people blame those they are closest to for things they are unhappy about.

 “Why are you pushing me away?” I whispered as I began to pull away.

He didn’t answer, but wouldn’t let go of me. He pulled me closer to him finally taking me into his arms.  His grip tightened and I felt his sincere embrace as he held me on his chest for a few minutes longer.  I didn’t want him to let go.  Nothing more between us was said before I left, just an exchange of glances that said, ‘I get you’.  I waited until I was in the car before I let myself cry.  I subconsciously felt the inner conflict Dan was adopting between loving me and blaming me for what was going on.

 I fed the kids and put them to sleep.  Before I got ready for bed I got on the computer to check my emails.  One addressed with no subject was from Dan only an hour earlier.

i wanted to send you a quick note.

i love you.

thank you so much for coming up to see me.

 sorry i was being a pain.

  it means the world to me to have you hug me. 
that touch was what my body needed, it was hard to let you go.

 felt like the old days, when we were dating,

 before we got married.

i really love you.

 i cant wait to get home and be apart of the family again.  we can
make it through this.

Dan

My mind flashed back to the time he was referring to.  Our relationship never felt perfect or without problems even then, but I knew he loved me, and it made me love him.  His email confirmed my thoughts and that we felt the same.
Dan wrote me a lot of letters before we got married. Reading the email he sent from the hospital pricked my heart reminding me how I had carefully chosen him as my mate.
My childhood broken home left me with fears about finding the right person to
share my life with.

I printed the note for safekeeping and quick retrieval for future bad days that were sure to come. My self worth was fragile and cracking. The small confirmations that Dan gave that we had each other, and we were in it together were the only things that gave me reason to keep going and act strong.  I needed to feel that same love he had for me in the beginning. I craved it, although I could feel it slowly slipping away the longer he had cancer.

We picked him up from the hospital the next day.  The boys decided to be with daddy, and brought their toys into our room so we could be together. Things felt better for the moment and I dismissed the hospital incident in my mind. 

Love is forgiving the ones you have relationships with, regardless of if they are sorry or not.  I knew by Dan’s ‘cancer love letter’ that he was sorry, that he didn’t want to push me away, and that he loved me.  I believed his letter that ‘we would make it through this’, meaning his cancer. I just didn’t suspect that there would be other things happen that we might not make it through.

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. 

GiRLs NiGhT OuT

having good friends to be silly with is a must.

tara was my date to see 'dream house'.

i have a unhealthy obsession with scary movies

but never want to see them alone.

wouldn't have been as fun with anyone else.

SkeLeToNs On ThE LoOsE

sprouts on too much ipod