Surviving Cancer, My Story Part 17: 'She is my wife'

Part 17: 'She is my wife'

Dan purchased a bike shirt, biking shoes and a can of coke with his gift cards he got for his birthday.  I watched him sit on the couch in his orange bike shirt that looked ridiculously large, while he looked over his new shimano shoes and clips.  He loved to mountain bike; it was his true passion in life. I knew he wished he were out on a trail rather than sitting in our house day after day.  Truthfully, I wish he were out doing that as well.  It was strange to be together all the time, not really doing our usual married roles of divide and conquer.

 Dan also got an updated MRI and CAT scan worked into the day of his shopping trip. Monday was only two days before we were scheduled to be back up to the hospital for round 4 of chemo, our last round before the amputation.  The tests were reviewed as usual, in addition to discussion about Dan’s poor health and his extreme low weight, which was now becoming a problem.  Dr. Chen and Dr. Randall both agreed that at full strength Dan would not survive the next round of chemotherapy.  They decided to lessen the amount of chemo for Wednesday by 20%.  He would be at the hospital the same amount of days and have the same amount of time for the medicine drip but it would be pumped into his veins a lot slower, hopefully to ease some of his symptoms.  They didn’t want to see him back at the hospital between rounds anymore.  The treatment was becoming too dangerous and almost more life threatening than his cancer.

Dan was admitted to the hospital on Wednesday. I was eager to get him checked in so I could go home to rest.  A nasty chest cold, and infection had settled into my lungs; taking my voice to a low raspy whisper.  I could barely speak and I felt miserable. No one was taking care of me, and with Dan coming home a few days later I needed to be in a position to be his ‘beckon call girl’ rather than his ‘death bed buddy’.

As the nurse checked us in she stood next to Dan’s bed reviewing his chart, checking off a list of questions she needed to ask.  I answered some of the questions while Dan’s mouth was getting looked at. My voice was so horrible, I sounded like I ought to be the patient checking into the hospital. In the least I could be categorized as a former chain smoker whose voice was permanently damaged by it’s effects.  I let him answer the rest of the questions while I stare at Ethan sitting in his car seat, wishing I had a throat lozenge. She proceeded to get his vitals. As she was waiting for the machines to give her readings she started some small talk with Dan. I was hardly paying attention to what she was saying.  My throat was so sore, it was all I could focus on. My brain was in a fog and the conversations around me muffled.  A few minutes later I pulled out of my daze and heard the nurse still talking to Dan, “That’s nice your mother came with you today", she said.

I pulled my head up from staring at Ethan in his car seat and looked directly at the back of her head. Was she talking about me?  She wasn’t looking at me, but if she had glanced back she would have gotten the death stare I was beaming into her poofy blonde curls.  Dan must have saw the shock on my face as my mouth hung open because he started laughing and said, “no, no, no!...she isn’t my mother, she is my wife.”

The middle-aged nurse stopped what she was doing and flipped her body around to see my horrified look.  Embarrassment flashed across her face and she began apologizing profusely. Excusing her mistake by how young Dan looked it was clear she didn’t see his birth date on his chart, nor did she imagine that the baby I had toted into his room could be his.  It was hard to blame her after she had listened to my harsh, deep, manly voice.  I’m sure the dark circles and bags under my eyes added to her conclusion. My body still hadn’t had a chance to fully recover from having a baby five months prior leaving my look anything but resembling the wife of a young cancer patient.  It was the most insulted I’d felt in a long time.
Cancer made my husband look young, while it made me look like I was old.
It was confirmation that I was in need of some serious rest.

Alone time at home gave me a chance to get caught up with everyday chores I couldn’t do while I was taking care of Dan.  Laundry had piled up and dishes needed to bed done. I spent a good part of the day doing chores.  The doorbell rang and Cole ran to see who it was.  He loved visitors.  One of my neighbors stood there with a box full of groceries, including diapers and luxury household items our church welfare system didn’t supply.  Cereal, baby wipes, nice laundry soap, and dryer sheets caught my eye instantly.  I hadn’t been expecting this.  She came into my house with smiles and a hug, explaining that she had way overbought at Costco on accident, even though we both knew that wasn’t the case.  I had been assigned to visit this neighbor from our church roster once a month the year prior.  Although very nice when I would visit and check up on her I sometimes wondered if she liked me very much. It was hard to read how she perceived our visits. I attributed my insecure feelings to social awkward moments at the time.  I liked this neighbor but didn’t know her very well at all.  My heart felt humbled as she came into my son’s room and sat with me on his bed while I folded his clothes.  I had never seen her be so outgoing as she reached out to me in kindness.  Her attention to my fragile emotions and situation where exactly what I needed.

She was God’s angel on an errand and she didn’t even know it. 

I had never cared for the assigned visits at church before but at that moment realized their potential in finding unexpected friendships and was grateful I’d been assigned to visit her in the past.  She was a working mother who didn’t have a lot extra.  I knew her efforts to help me provide for my family came straight from the goodness of her heart. 

I wasn’t fully aware at the time but people were watching what was happening to Dan and I. Several times when we came home from the hospital and opened the front door there would be plates of home made cookies and a note, or a card attached to fancy lotion wrapped in cellophane.  A boy from our youth program wanted to have a car wash for an activity to raise some money for our family.  I was hardly aware of the behind the scenes efforts. I usually first learned about it only when the act of service was complete. When answering the door and seeing a boy with a humble smile on his face and his hands outstretched to mine holding $400 cash in small bills, I felt a warm shudder of humility travel through my body as he told me what he wanted to do and how he wanted to give.  I knew it was the spirit, confirming that God hadn’t forgotten me in my trials.  He was sending me love and help through others.

I was the beggar who wasn't forced to beg.

Dan was kept at the hospital several days longer before he came home from this round.  The doctors found it imperative to get his nausea under control before they’d release him this time.  My voice was still gone when I brought him home.  Dan was managing his symptoms with medication and home IV potassium fluids, trying to not throw up. Neither of us had any desire or ability to talk.  We sat in the living room together and watch Cole ‘mother’ Ethan. He had recently developed a number of unrecognizable words and began talking the baby’s ear off.  It was cute to watch him play and talk to his brother, oblivious to the elements surrounding him as being something other than normal.

Round 4 was over.  It was the beginning of time away from the chemo. Dan's body needed to heal.  He would need to be in good enough health to have the amputation, the surgery that would save his life and dismember parts from his body.  It felt like we had crossed a hurdle, even though the race was far from over. 
With a small break from chemo, Dan put himself on detail to mend while I was forced to focus on the secondary aspects of our situation….the bills.  The ones from the hospital had been coming every day, never one under $1000 for our portion to be paid.  I had been stacking them in a pile on my microwave, sometimes unopened.  I only paid the bills to keep us living in our small home and able to get by every month.  I rarely wanted to talk about bills to anyone; my first option in conversation was always how Dan’s cancer was doing.

 Opening my financial life to others was painful. When you need help everyone wants the details and every financial transaction becomes public for scrutinizing. It reminded me of needing help with my remedial math homework in grade school. I hated asking for the help and sometimes felt like I was failing in the subject of our financial life, as most people who get cancer do.

The truth was simple.  Ignoring the bills weren’t making them go away.  I shifted my thoughts and prayers from Dan to the bills. 

dR. LoTioN & mAsSagE mAsTer

dinner date and 

movie night just we three,

 

 gave sprouts ideas to 

spoil me.

"momma lay down, 

put up your feet,

your turn, relax,

this time we treat."

 my young massage master 

and dr. lotion 

rolled up their sleeves

and worked a potion.

new soft skin

and smile on face,

gave these sprouts

team points of first place.

LoSt BuM-sNuGgLeS

e was sick today.

usual mornings he crawls in my bed 

 and wakes me up 

with a 'bum-snuggle'.

last 3 days my 'bum-snuggles'

have turned into nose wipes and 

ouchie tummies.

 

reminders of my sweet boy

 on 'bum-snuggle' days.

i LoVe tO sEe ThE teMpLe

i miss home.

this is where i was married.

it is beautiful.

i want to take the sprouts there.

they love the angels on the tops

of the temples.

Spokane Washington Temple

Surviving Cancer, My Story Part 16: Walking Dead

Part 16: walking dead

After being in the hospital for more than a week Dan was finally released to come home.  It was July 3^rd. I had been running all over town getting things ready for the next couple of days. I scrounged up some money to buy mini fireworks and sparklers for the fourth.  Dan’s birthday was the following day. I needed to order a cake and wrap presents. Cancer needed to be out of the picture, even for only a few days.

Although he was well enough to come home Dan was still very sick.  He felt weak and looked frail.  Pneumonia had crept into his lungs while he was at the hospital. His throat was sore, and a nasty cough kept him throwing up several times a day.

(Fourth of July 2007)
We attempted to attend a get together with friends for fireworks. They had three young boys close to our own son’s age.  They hadn’t seen Dan since we started treatment.  Everyone tried to act natural, but were obviously shocked at his pale thin body.  He had dropped so much weight; 60 pounds at this point from his tall and lengthy build from before.

Nobody said anything as we got ready to start the festivities.  Dan sat on the couch and zoned to his half zombie-like state. He called my name a few minutes later and as I sat down next to him on the couch I already knew what he wanted.  “Take me home, I’m not going to make it”.

I didn’t know how to feel; worried, panicked, fear, anxiety, sympathy, sadness, annoyance, bitterness and loneliness. Did I feel these things for my husband, or just the cancer? I knew he was legitimately sick.  I also knew I was living in two different worlds. I was young wife and mommy to two beautiful boys moving forward with the ‘American Dream’.  But I was also old, worn, broken-down, nursemaid to a man I didn’t recognize but had been married to my entire adult life.  It was hard to separate the two.

 Dan climbed back into the car, and I took him down the street to our home.  I helped him into bed and told him I wouldn’t stay long at our friends.  Cole was left behind to not miss out on any fun and I intended to go back for 30 minutes before bringing the rest of our family home.  The sadness I felt not having a complete family trumped my desire to do anything without my husband.  He had been the center of my world for 6 years, and the boy of my childhood dreams that I would spend my ‘happily ever after’ with.

My children were tired from the lack of routine, naps, and all the chaos that surrounded our lives because of what we were going through.  Dan convinced himself to participate in a family sparkler party on the front lawn for 15 minutes.  It was just the four of us, not quite dark yet.  Three parachute guys were shot up in the air for Cole to run and catch.  He was fascinated by them and the colors of their chutes.  After retrieving them from their landing spots he ran into the house to hide them away for playtime later. My three year old was undoubtedly suffering from the same symptoms I was suffering from. He grasped at anything that meant security and happiness, even if it was temporary. Dan lit some mini tanks and a fire engine, less entertaining than the pricey packages had promised.

After a few sparklers the day was over. It had gone by too fast.  I was happy to have Dan home from the hospital.  My heart ached inside telling me a different story.  I forced those feelings to stay deep inside, keeping them from forming into words or emotions.  Dan had become a physical zombie by this point, but I had become an emotional one. How could I act so normal when everything around me was anything but normal?  I couldn’t handle a realization that I was a mere 30 year old doing what I was doing everyday.  

 Where were my 'Norman Rockwell' moments?

Dan went to bed right away. I wrapped up presents for his party the next day.  Phone calls had been made to my family members weeks prior, reminding them of Dan’s birthday.  I asked them to send something to make it special for him.  Our funds were non-existent, and my time to hunt for meaningful gifts were short.  Although he was becoming a man I didn’t fully know anymore my convictions for him were deep and my loyalty strong.  If love could cure a disease, he would have been healed instantly.  I finished getting everything ready for his party the next day and crawled into bed next to him.  My body curled up next to his 'Ethiopian' frame. The bones in his body stuck out everywhere. I was snuggling a skeleton, yet grateful my bed wasn’t empty. The nights he spent at the hospital were the times I got up half way through the night, crept into my son’s room, slipped under his covers, and held him close just to not feel alone.  

 I was a child that needed comforting.

(My parents, Cordell & Starla Briggs)
My parents drove an hour up to our house for Dan’s birthday.  Our son, who was enamored by ‘Thomas the Tank Engine’ obsessed over the birthday series we watched on a regular basis.  Balloons and silly hats were the theme for a successful party according to Thomas.  My mom brought balloons and I furnished the silly hats to personalize it for Cole.

“Happy Birthday Dan”, I whispered to help him wake up.  If he only stayed awake for a couple hours I wanted him to remember that he had a happy birthday and that he belonged to a family who cared about him.  My brother, had driven up the night before from Vegas to visit with us.  Ryan, who developed a unique form of epilepsy when we were in grade school, could sympathize with what we were going through.  He had been through horrible things that were life changing for him and our family. As newly weds we visited him in the hospital for his own scary surgery on his brain. The connection we had through disease and it's impact gave us an unspoken closeness. Dan fit into my family well. He was youngest in his own family, well behind his siblings in years. They hardly seemed close. My siblings and I were a close year apart from one another and they adopted Dan as their own. Both sets of my parents took more interest in his life than his own parents who rarely called or visit did.

 (My brother, Ryan Bird)

I wrapped Dan in his 'bio-hazard' safety plastic so he could take a shower before I whisked myself off to the kitchen. I helped my mom make a late lunch.  My dad and brother played with the boys while they waited.  Dan emerged from the bedroom and came down the hallway.  He sat himself down at the decorated table and tried to smile as he said hello to everyone.  The mood was somber as we sat down to eat.  Dan piled his plate full of food, but never took one bite.  He picked at it while he chatted with everyone at the table.  It was painful to watch.  I desperately wanted him to eat something.  He obviously wanted that too.  Everyone must have noticed because lunch ended rather quickly and we lit the candles on the cake. We began to sing.  After he blew out the few candles we could find for his cake he just sat and stared at the frosting.

“How old does today make you?”, my dad asked trying to carry the conversation.

“Twenty-Seven”, Dan replied.  He paused, and then said it again, “twenty-seven years old”.

(27 years old)
He grazed his finger across the side of the cake, brought his finger to his mouth, and licked a small dollop of frosting for a taste.  Presents were next.  Cole sat next to him eagerly waiting for his dad to hand him the present. Dan would quit half way through because he couldn’t open it. From his speech to his thoughts and movements he was slow.  My family had come through for me and sent him gift cards and a few things to open.  It meant a lot to me.  I missed the birthday’s we spent with each other before the cancer, as a couple, on a private date.  I wasn’t certain if there would be more of those in the future or if they were a thing of the past.

Dan’s eyes were tired and distant as always.  The short party was over, he needed to go back to bed.  I was sad to see my parents leave.  I secretly wanted them to stay, to rescue their little girl from the hell she was in.  My breakdown never happened and my mom kissed me good-bye.  I was left to be 'the mommy', the one in charge, brave and rescuing everyone else from the hell they were in.

The house fell quiet after Dan and the boys were all down for naps.  I cleaned up the kitchen, put away the presents, and gathered up the balloons.  I walked in the kitchen, picked up a fork and plunked it into the cake.  I took bite after bite without taking much breathe in-between.  I had to force the lump in my throat down.  I was loosing the battle I was trying to fight.  Soon the tears fell fast down my cheeks. The fork fell to the counter and I wrapped my arms around both sides of my body and leaned over while I sobbed.  My mind was blank.  No thoughts or words could get me through all the emotions pent up inside. They would have to come out, even if only through rare moments of sudden breakdowns and uncontrollable tears.

Dan was oblivious to my pain. Cancer was never about me. 

I lived in the shadow of his disease.

Later that evening we spent more time with just the four of us.  I carefully planned out small tasks for us to do, understanding the importance of keeping us all bonded together somehow.  Dan forced himself to participate as much as he could. He was void of human ties and emotions most of the time; just existing and enduring what he had to, in order to get him to the point of remission and a body that functioned as if he were alive inside it. Until then I couldn’t expect much more from him than a walking corpse in my house.

The air in the night brought an eerie chill to my bones.  I was able to sleep, but felt dark and cold.  Before Dan had fallen asleep he had been dry heaving for several hours.  He hadn’t eaten anything solid for so long. There wasn’t anything that could come up except stomach bile.  The only thing I could do was sit next to him, hear and feel his body involuntarily shake, and pray that it would stop while hoping the knots in my stomach would go away. I was relieved when the drugs kicked in and he passed out. 

The next morning he was icy cold. His eyes were open, staring at the ceiling when I awoke and looked over at him. “How are you feeling?”, I asked.  “Okay... I guess”, he responded slowly.  The doctor told him a couple days after he came home from the hospital the medicine prescribed for the pneumonia would fully kick in and he would finally start to feel better.  He opened his mouth to say something, but paused before he said it.

“I thought I was going to die last night…I didn’t think I would wake up.”

My eyes glossed over for a minute or two before I grasped what he had said.

“What do you mean? Why didn’t you tell me?”….what and why questions were pouring out of my mouth expressing my horror.

“I didn’t want to scare you”, he explained, “I could feel my organs shutting down”.

For a moment I felt like my husband had come back to me.  He held me close and we comforted each other without words.

What the doctor had told him was true.  After the scary brush with death that night Dan started to feel better.  Mr. Jekyll had slipped away while ‘Hyde’ slowly came back.  He ate a little food and kept it down.  After most of the day, he felt well enough to get up and move around.  He had several gift cards in his possession and expressed his desire for some alone time to do some birthday shopping.  I was nervous about him driving a car considering he could barely walk his skeleton body to the bathroom from our bed, but agreed to let him try it.  Being a prisoner in your bed or your body was one of the worst things I could imagine.

While he was gone I called my mom to unleash the secret I forced myself to downplay all day long. I was panicked as I told her what Dan had said about dying in the night.  There was no shock on the other end of the phone, only explanation of a similar fear.

“On the way home from your house Dad said he didn’t think Dan looked like he was well enough to make it through another night.”

Although conversation on the drive home from our house eluded to seriousness of Dan’s condition I think they dismissed the feelings and talk as paranoia.

I was horrified at her admission, and immediately thankful that I didn’t wake up to a dead husband.  I couldn't stand to think of what would happen if he died.  What would I do if that had happened?  No matter how hard what I was going through was, as long as he didn’t die I knew I could get through it. 

What I hadn’t considered at that point was 'death in increments'.  Dan was dying, in small doses. He was changing and different every time I brought him home from the hospital. The possibility I failed to consider was that the body might survive the cancer although the soul it harnessed might not.

GhoSt Of E

sLeEpLeSs sTilL ...

why can't i sleep like this?

 

past few weeks have been very

difficult to sleep.

my eyes are heavy and i know 

i'm tired...my mind is wrestless

and full.

shut off mind!

i need beauty rest!!

posting part 16 tomorrow or monday,

needed to rest from thinking 

of time that is gone.

the sprouts have been full of questions 

and supposed solutions...

"mom...do we have a babysitter this weekend?"

"no"

"if you don't get a babysitter how will

you ever get a date?" :/

"mom...when i go to daddy's house i'm going to find his

'marry card' (temple recommend) and bring it home to give to you".

"that isn't how it works" :/

"mom...when i grow up i will look for valerie

(ko's gf, she moved far away with no forwarding information) 

and if i can't find her i won't

get another girlfriend and never 

get married."

"really? you won't want to try and like 

other girls?" :/

"no one will ever be as pretty as valerie".

"like...momma, i like u a lil bit...."

(eef's new way of being funny

as he's giving me the look of 

'is she buying this?')

:/

"like...i have to sleep in ur room 

cuz the spikeyman (woolverine which 

he has not seen) (?) is in

my room"

:/

"like...how many more

minutes til howoween"

minutes? :/

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.