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Surviving Cancer, My Story Part 11: One down, five to go...

Part 11: One down, five to go…

I walked into the hospital room and said good morning to my in-laws who were shocked to see me back. My husband on the other hand seemed relieved I was there. A scowl darted across the face of my mother in law as she let out an exaggerated sigh.  I was used to her abrupt expressions of unhappiness by now.  She was an older mother by regular standards as Dan was her youngest child. She had behaved this way before, like the time Dan told her we were getting married.  It became standard for me to envision her with hands upon her hips and stomping her foot while saying, “Well I never…!”, like a scene from a black and white movie from her time.

I chose to ignore her pouting.  I knew it only worked on the men in her life. The baby needed to be held and I took him out of his car seat and handed him her direction.  She refused to take him, leaving me with only a second option to pass him to his grandfather.  Although both of Dan’s parents were as equally difficult as each other, his dad was somewhat softer when it came to his grandchildren.  He would always hold them when asked.  I don’t remember Marjorie ever holding either of my children, during the year we had cancer, or before.  She possessed such a disapproving attitude all the time.  I had never seen this woman smile, and after each short visit over the years it left my husband feeling disappointment. His own mother showed such little excitement or happiness for any of his real achievements or proud moments as an adult.  It was a huge let down to him, which gave me little hopes to have the relationship I’d so desired to have with a mother in-law once I got married.

I suggested they take the baby on a walk.  I wanted to ask Dan how the treatment went with his parents through the night while I was away.

“My dad tried to give me a sponge bath”…..he groaned and rolled his eyes at the same time….

A huge smile crept upon my face.  When he glanced over and saw my expression we both started laughing until we settled upon just looking at each other with only smiles on our faces remaining.  Earlier in our marriage it was impossible for one of us to look directly at the other and keep a straight face.  We shared a bond that needed no words to say ‘I love you’ when a smile was all that was required. During an argument or a fight I knew it was impossible for him to look at me even when he was mad and keep a straight face if my lips were grinning from ear to ear. “If you smile, it’s over”, would be my frequent phrase, when a cold war was in outbreak between us. I knew I had him every time as he desperately tried to keep his lips from turning up.  Most fights between us ended this way and my ignorance couldn’t allow me to appreciate how simple the love between two people could be.

“Why would you let your dad do that?” I asked while still laughing at his confession…..

“He just started doing it”, he explained, “ I told him to stop, that you would help me shower when you came back, but of course he wouldn’t listen.” We both knew a sponge shower was probably the last thing any man would want from his dad.

Since the Hickman was inserted taking a shower was a tedious chore. We had practiced the sterile routine several times in the week before we went to the hospital.  His Hickman would get a ‘dressing’ change.  The large stick pad would be removed and the area cleaned with alcohol.  Orange surgical soap was applied to the skin surrounding the opening, and a new clear stick pad would be replaced with no air or water trapped between it and the skin.  Hepron shots would be administered to the tubes twice a day and for showers Dan would get a ‘press n seal’ wrap 4 or 5 times around his chest to seal off the area from getting any water within a 12 inch proximity to the open wound.  He would need help whisking the water off the plastic before cutting it down the back and peeling it away from his body.  The doctors had scared us enough about ever getting it wet that we took all necessary precautions to avoid irreversible infection.

I asked him if he felt sick yet from the drugs, and wondered if he had started throwing up.  I listened to him tell me it started in the middle of the night, how horrible it had been. After being done with one session he still felt sick and knew he’d be back in the bathroom within hours for more.  The visions of sitting on the edge of the tub at home, holding my hair back with one hand came to my mind from when I was pregnant the year before.  Throwing up for nine months gave me some sympathy for the anticipation of knowing your going to be sick for a while and not being able to do anything about it.

We could hear his parents talking loudly in the hall and knew they were coming back.  I prepared myself to be nice but firm, as I knew they would try to continue controlling the situation.  Sitting on the end of Dan’s bed I watched his mom walk to the only seat next to the bedside.  I tried to avoid conflict, where they were concerned, and took the baby and sat on the couch and played with him while he was awake.  Dan’s mother started to force feed her son, shoving a peanut butter and jelly sandwich into his face, “here, eat this!”, she demanded as she let out a chuckle and watch her son move his head out of the way.  “Mom, stop!”, he pleaded.  She continued to chuckle and pursue her efforts while her husband looked up from his computer to also let out a low below in support of her comical behavior.

Dan was annoyed even though he tolerated her abusive joking.  I knew how condescending they were and it made my blood boil inside.  The nurse came in to check Dan’s vitals and told him he would probably go home in the late afternoon when his treatment was over.  As I spoke with the nurse my in-laws could see I planned to retain my position of ‘cancer patient’s wife’ and that meant I wouldn’t just pack up my intentions, go home, and give into their desires for me to disappear.

His mother scoffed loudly to draw attention to her announcement that she and her husband were leaving.  “Good”, I thought. The comforting words took on double meaning for me and would have been more appropriate if she would have just said, “at ease, soldier”, even if not followed by a salute.

With his parents gone for the day and his first treatment completed Dan was ready to be released from the hospital. We both knew the next couple of days and weeks would be another hurdle we would need to overcome.  We were prescribed half a dozen new drugs and instructions to come back the next day for a Neulasta shot.  So many of his white blood cells were killed from the chemotherapy that any infection could be life threatening.  The required shot would serve the purpose of reducing that risk by boosting the remaining white blood cells that survived the harsh treatment. 

We lived about a 45-minute drive away from the hospital and knowing we’d have to come back the next day made us anxious to get in the car and head home.  I called the neighbor watching Cole and told her we were finally leaving.  She seemed annoyed that picking my husband up from the hospital was taking so long.  I apologized and felt panicked to get back in order to not damage our friendship by inconveniencing her schedule.   As we made our way down the road toward the freeway, Dan held the pink bucket gifted to him from Huntsman close to his face.  He was already pail from the weekend of getting drugged, but he looked ghostly white and I knew it would be a difficult ride home.  He began heaving after the car started moving.  I drove slowly in the right hand lane unsure if I should keep going or try and find somewhere to stop the car.  The violence and noise he was making startled the baby who was now awake in the back and crying.   The only thing keeping this from being a terribly written sit-com on television was that it wasn’t pretend, it was really happening.

“Pull over”, he gasped. I desperately look for somewhere to stop.  We were on a main road with no turn offs and I knew he’d have to wait.  The first street we came to I found a spot large enough for us to pull over the car. He opened the door and finished the ‘session’ and emptied his bucket before he pulled himself back inside and permitted me to continue driving.  I felt horrible, helpless knowing there wasn’t anything I could do to make it stop.  He would have to ride this out until the sick feeling abandoned his body.  We only made it about 5 miles more down the road before he was begging me to pull over the car again, burying his face in his bucket.  This routine continued all the way to the freeway pushing our 45-minute drive to close to 2 hours before we made it home. 

My neighbor watching Cole had called us 3 times expressing her upset that we had not been there to pick up our son and that she wouldn’t watch him for us again.  I’m sure she could hear Dan throwing up in the background as I explained what was taking so long in addition to more apologies.  By the time we made it to her house my gratitude had turned to bitterness and Dan voiced my feelings for me as I was about to open my door to retrieve our son, “We are never talking to her again, she’s not a real friend.” 

I pulled into the garage and began unloading all three boys out of the car one at a time, first the baby, then our older son, and finally my weak husband.  My arm wrapped around his waist while his draped across my shoulders.  I helped him into our room and set up a station of drugs, throw up bins, and wet wash towels to aid his discomfort. My two sons in the other room could hear their dad being sick but thankfully couldn’t process the severity of what was really happening. I made them dinner and gave them the needed attention they deserved while my emotions kept me thinking of my poor husband alone in our room.  I had shut the door to keep the noise down and hoped he’d fall asleep.  Exhaustion was taking me over, I knew we all needed rest.

The next day we had several visitors.  My grandmother and aunt came to check on us while they were passing through town.  Dan hadn’t left our room once.  He only left the bed to hang his head over the toilet and even then sometimes he just couldn’t make it that far thus enlisted me to exchange him new bucket for old. Taking care of a cancer patient was far worse than the movies made it appear. He was sleeping when our guests came over and I allowed them to peer in at him from the door so as not to wake him up. It was interested to see the reactions on their faces when they would come over to visit and see Dan for the first time. It was like they were getting a close look at something that people rarely saw up close, perhaps the changes that occurred within a cocoon, or when something starts out one way and then ends up something completely different. They were getting a glimpse of the rare process between the two, and I the first hand experience of what he started out as and the different person he would end up.  I was blind to this process, frozen to what was really happening around me, only allowing myself to grasp things day by day. I allowed myself only thoughts of good times, of the sweet moments of our young lives and short time together. I remembered the butterflies he gave me at our wedding and the way he held our two sons.  I couldn’t imagine a man who might one day be unrecognizable to his own wife and two small children.

Dan got his $8,000.00 Neulasta shot that day and I felt as if round 1 was finally over.  If we could survive the remaining 5 treatments, we could get on with the amputation and put this all behind us.

 Our son had turned three in the previous weeks following up to chemo day, and commemorating his birthday had been placed on hold as less of a priority.   We held an intimate ceremony of mom, dad, and brother singing our well wishes to a boy with a humble heart and happiness to get only one present and a cupcake sized cake not traditionally home-made.

Dan’s affected finger and hand became a nuisance  after we had accepted it as a soon discarded part without use.  It was hard to wait to have it rid from the equation.  Lifeless and in the way it was still connected to Dan’s body and a painful reminder that we had a long journey still ahead.

Surviving Cancer, My Story Part 10: Babies DO NOT belong in hospitals

 Part 10 :   Babies DO NOT belong in hospitals

Dan’s rare cancer qualified him for a case study with the hospital.  Students, residents, and interns were constantly pouring themselves into our room. Clipboards and questionnaires in hand, they would perform pretend exams on Dan, taking his temperature, and feeling his pulse.  Huntsman was a learning hospital and being a patient there meant you belonged to the science of cancer.  As a new mom for the second time around, it was more than frustrating to try and nurse my infant and settle him quietly down for a nap with young ambitious ‘wannabe’ doctors bounding in every 45 minutes while we were there.   Still I was grateful for the doctors who were trying to better the industry and their eagerness to get their hands dirty with knowledge. 

The wait for Dan’s injection took so long that we had time to order lunch from the upstairs restaurant, play card games which we frequently did in our marriage, watch two full movies and then order dinner before we were told the prescription was almost ready and chemo time would be underway soon.  Why in the world did they require us to be at the hospital at noon if we weren’t going to get poisoned until 8 pm at night? I missed my other son and wanted to go give him a kiss good night, but was committed to being with my husband.  We were a team, and I was loyal to being his support.  I didn’t want to be away from him.  I needed to feel needed in order to avoid being left alone with my thoughts and their ability to run away with panic and worry.

Two ports hanging from his chest soon became five as technology of medical devises allowed ‘T’ ports to hook in allowing for more drug access at one time.  The button was pushed and the drugs began filtering down the tubes.  There would be no going back; we were stuck in the ‘wait phase’ of the great race.  Only time would tell who would win the gruesome battle. The room fell silent as we ran out of things to talk about.  Only so much can be said to distract from obvious.  Neither of us wanted to address the big elephant in the room. The emotional exhaustion and chemo made Dan drowsy.  I was tired too. He complained about the burning he was feeling as the drugs were pushed at full force through the tubes. I encouraged him to fall asleep.  I knew I’d get a chance to step out for a short break as soon as he did.  Within minutes his eyes were shut and his rhythmic breathing confirmed his body finally was at rest. 

Realizing I was off duty for a couple hours I wandered into the hallway. It was so quiet you could hear a pin drop, and I subconsciously tiptoed my way around. Each floor had a computer room and visiting quarters that was not only beautiful, but also open and inviting. It resembled an art gallery, clean and quite, a place to sit and reflect. I had regularly been sending out emails to update our family and friends. Feeling compelled to sit and write while my thoughts were fresh I went to the computer room first. The presidential suite we were lucky to have was right next door to this room and made it easy for me to go back and check on Dan and the baby.  They were both still sleeping.  I left Ethan in his car seat and sat by Dan in the recliner. His good hand was closet to me and I reached onto the bedside where it was and slip mine underneath his.  His wedding ring caught my attention and it made me think about the same finger on his opposite hand that was the cause for all this trouble.

 Stupid finger! It was almost an embarrassing story to tell people. “I almost died once from a broken finger”, didn’t nearly sound as dramatic as “I fell off a mountain and lived to tell about it”. There was no comparison to the two. My mind wandered into pointless thoughts like this the more I sat watching Dan, waiting for something to happen accompanied by the annoying sound waves from the machines pounding into my head.  I got up for another break.

It became a ritual of mine to go sit in the large visiting room, sit in different chairs, and zone out.  Often I would lie on my back across three of the chairs without arms and star at the ceiling as if I were trying to make out shapes from passing clouds.  People were always coming and going through this open area to gain access to the back hallway and a short cut to the patient rooms on the east floor from the elevators.  I became a habitual people watcher while I pretended to read a book or doing something else.  Several of us were on the same chemo schedule of 3 weeks off, and 1 week on, although most patients spent more time at the hospital because of complications during their off weeks than the ones on.  A middle aged woman with black hair sat by me a couple times and told me the progress of her teenage son who was in a neighboring room. He was an athlete before he got cancer.  Now he was so weak from his treatments he could hardly walk.  I felt bad for her of course, but never as bad as I felt for myself.  The timing of my trial couldn’t have been worse.  I was sure no one could compare. 

Babies don’t belong in cancer hospitals, and toting my 2 months old around the hospital gave me first place rights to complain.  During one my ‘hide-out’ breaks in this room I began to notice the same man coming to visit everyday.  He couldn’t be more than 5 years older than me.  He always brought a toddler with him and would disappear around the corner with her to the back rooms.  I could only imagine he was visiting a parent or an older relative. One of his visits, after he routinely disappeared around the corner, he reemerged chasing his toddler toward the room I adopted for alone time. A woman, young, bald and thin, followed him.  He continued to chase the baby girl with sparse blonde curls bounding from her head while the woman obviously tired sat down in the first chair she came to.  She was beautiful and wore a long skirt to hide her thin legs, and a smile on her face as she watched the grown baby stagger away from her father.  The man caught up to the baby and swooped her up in his arms.  He brought the little girl to the woman and set her in her lap and sat down in the chair next to them.  The baby was hers.  I couldn’t take my eyes away from watching them.  It was obvious the woman had been stricken with cancer for a while now, maybe shortly after her baby was born. The amount of weight loss and thick dark circles around the eyes always gave people away.  She was so thin there would be no way for her to lift that baby, let alone carry her anywhere by herself. My thoughts shifted to my own baby, who was back in our room still asleep in his car seat.  I felt guilt for being thankful our situation wasn’t reversed. I humbly turned over the first place complaint voucher to this mother in my mind and made my way back to our room.  I wanted to be with my baby.

Dan was still peacefully sleeping.  Preparing for sleep myself, I began the process of folding down the couch to a bed.  Although the hospital was nice, nothing replaced sleeping at home, and the make shift bed was stiff and uncomfortable.  I didn’t complain, realizing it could be worse, and I wanted to be with my husband even at a few discomforts along the way. I picked up my son from his car seat and lay him in a bed of pillows where he would be safe and close to me.  I was not used to sleeping solo and from that point on at all hospital stays I employed Ethan to sleep next to me and help me not feel alone.

The nights were restless as two-hour intervals would be checkpoints for the nurses to chart Dan’s progress and reactions to the drugs. Between feeding an infant and the hospital staff I was becoming accustomed to living without sleep.

Morning soon came and I was nervous to see what would happen.  I didn’t know what I should expect. Dan wouldn’t wake up on his own, the drugs were hard at work keeping his body in war with itself.  His energy was gone and sleep was all he wanted.  The nurses required him to wake up and try to eat something.  He hadn’t felt sick yet and tried to joke a little and be jovial about nothing bad happening yet. Everyone knows the classic side effects of chemo; losing your hair and a lot of throwing up.

He hardly ate anything and complained about the bad taste in his mouth.  The chemo was permeating his entire body by now and food was the last thing on his mind.

My in-laws had been staying the weekend with Dan’s aunt and came to visit in the late afternoon. I was grateful I would get in a longer break and knew the visit would lift my husband’s spirits.  I planned to go visit my older son and ground myself to a normal activity with him; like going to the park.  The door opened and Dan’s parents entered the room hold suitcases.  Although confused, I wasn’t surprised. It was obvious they were attempting to take over.  For as long as I knew them they were consistent and devoted to controlling any amount of their children’s adult lives as they could. As a result their children had married and moved out of state far away from them. They considered me an annoyance in their conquest and someone they could easily bully into submission. 

Early in our marriage Dan had a lot of conflict with his parents for the amount of disrespect they gave me not only as a person, but also as his wife.  We vowed to tolerate their antics for the sake of peace since we only saw them a couple of days a year at most.

“Hello dear!”, his mother said with disdain as she passed me and went to her son’s bedside.  She leaned down to kiss him on his forehead.  His father also said hi and then plunked himself down on the only couch in the room and set up an office of computers and telephones to keep himself busy with work, as he clearly planned on being there several days. After looking over her son for the first time in a year his mother sat in the chair next to the bed and grabbed his hand.  The wedding ring I was gazing at the night before was now engulfed by his mothers grasp. She looked at me and snidely said, “ok dear, we are here, and you can go now, goodbye!” Dan and I looked at each other at the same time.  We both waited for the telepathic message to come from the other to know what we should say or how we should react.

“Ok….”, I said with gritted teeth and a forced smile, “I’ll be back in about 5 hours”, I continued.  I already knew what they were going to say, but I refused to let them feel like what they were about to do was okay or going to be easy.  Somehow they never thought to talk to me about their plans before carrying them out.  I knew I was of little consequence to them, a thorn in their side. I hated feeling like a ‘nobody’ to them, even though I had bore two of their grandchildren.  If only they knew the difference it would have made in my feelings toward to hear them say, ‘thank you’, ‘we are glad our son has you’, or merely “how are you holding up?” These simple words would carry kindness into my heart and motivation to want them more a part of our lives.

“No, you can say goodnight to Dan now, we have brought our bags and are staying the night.  There is no need for you to come back, we’ll bring him home in a few days.” She rambled on without looking directly at me, as if she were looking for the remote to the TV.  I didn’t want a fight and although Dan had a worried look on his face that said ‘Don’t leave me alone with them for that long’, I knew I didn’t need their permission to be there.  If anything they would need mine if a challenge of guardianship arose. I walked over to Dan’s beside and gave him as good a hug as possible.  I knew every part of his body ached and anything touching him hurt.  Every part of my spirit ached, and anything threatening to dampen it hurt just the same.  I whispered that I would come back tomorrow and when I pulled away he had a reassured smile on his face.  We were like two kids who were keeping a secret from our parents.

I picked up my bags and the car seat carrying our son.  My shoulders were overloaded with weight, physically resembling the way they felt for several weeks without carrying anything at all. I walked to the elevator and pushed the button. As I walk to my car I felt the warm breeze on a spring night and noticed the sunset settling over the valley.  My mind was blank as I drove home.  I called my mother and asked her to bring Cole home. Although I disliked my mother in law a great deal, I knew it would be important for her to spend alone time with her son.  I needed alone time with my son too, and he needed that from me.  It would be the first time in months that I would get to snuggle his small body. I put the baby down in his crib and curled up next to Cole in his toddler bed.  He had no idea what I had been doing for two days, all he knew was that I had been gone and he missed me. He turned his body to mine and wrapped his arms around me as best he could.  He closed his eyes and instantly fell asleep.  I watched him sleep for a few minutes before I allowed myself to close my own eyes.  I still saw my three year old as a baby, and probably always would.  As much as I disliked Dan’s mother, I knew she felt the same way about her son as I did about mine.

Surviving Cancer: My Story, Part 9 'Envelopes from angels, and waivers of death'

 Part 9: envelopes from angels…..and waivers of death.

I went to the mailbox and found three envelopes.  One was from the hospital and two were from my aunts.  I opened the hospital envelope first. I knew it was a bill, which I considered ‘the bad news’.  The first thing that jumped off the page was the amount in big bold print, $24,000.  ‘Please pay this amount’ it read with a big black arrow pointing to it.  It was the first bill of many we would receive daily for his tests and treatments. This one was for a ‘PET’ scan, one of the most expensive tests done for cancer. Shooting radiation into your arm and scanning allows for seeing everything that is going on in the body from the cellular level, where malfunctions, mutations, and disease first begin, from heart problems, to brain disorders, to our affectionate cancer. Almost every curable disease could be detected before beginning with one simple test. When I found this out my mind reeled at how messed up the health care system really was. The last stitch effort to save people from their fates was more important than preventing tragedies before they occur. Preventative medicine was apparently still in the stone ages in concept and development. Not all patience with cancer got a PET scan due to the astronomical cost.  Insurance companies rarely agree to pay for it, however Dan got PET scans all the time.  I was half jealous he knew everything that was going on in his body at all times during this process where I was left to wonder if there was anything scary going on inside me I was unaware of. I still dream of getting my fortune told from a PET scan one day. Our health insurance was very good during this time, with the exception of ‘out of network’ doctors.  Huntsman hospital and our specialized team were not in the network.  This presented a problem since our doctor was one of very few who would even take him as a patient and who was qualified to treat his type of cancer.

I hastily threw the envelope and it’s contents onto the counter and pulled several other papers already lying there over it.  I had no desire to look at it anymore since I knew there would be several more to come.  I’d have plenty of time to address it later.

The other two envelopes each contained a handwritten note and a check.  Ironically the amounts were identical, $1000.00.  I looked at them twice to confirm that it wasn’t just $10.00.  When I realized what I was looking at I set the checks on the counter next to each other.  A grateful tear fell down my cheek as I closed my eyes to say a silent prayer of thanks.  I had been holding in so much for the sake of being strong for everyone.  Any gesture of kindness, help, or true understanding for what I was going through would break my fragile emotions, although I didn’t let anyone see me cry, I saved that for when I was alone. This happened several times over the following four months.  I would get envelopes, mostly bills, occasionally mixed in with notes containing kind words, and almost always accompanied by a check.  It was very humbling to see our less financially fortunate family members and friends digging in their pockets to send us money to help cover our bills when they were probably in need of extra money themselves.  I can recount the families these envelopes were from. They were good people, lived Christ-centered lives, or had gone through their own personal Gethsemane sometime before.   One friend of mine had lost a baby followed by several miscarriages, an aunt who had gone through cancer twice, another aunt whose young husband had suddenly died because of an unkown heart defect, leaving her alone with five children.  Why do these humbling experiences make us more empathetic to others, when without them we probably would not be?  I knew the envelopes were sent from angels….the help I sought for in my prayers.  I had no idea how we were going to survive each month and pay to rid the cancer from Dan’s body. The burden on my shoulders to make everything work was heavy and hard to maintain balance. Between these envelopes and help from our community and church we were able to manage our finances and the worry moved it’s way down to the bottom of the list. 

I had also started my campaign to the insurance company applying for a GAP acceptance.  If there were no doctors in our network who could treat Dan then the chances for partial coverage of one out of network were higher.

Insurance companies historically don’t give in easily and I spent a large amount of my time on the phone with United Health Care being passed from one supervisor to another.  I was usually good at getting my way, especially if I needed a good deal on shoes I couldn’t live without, or to get my cell phone bill reduces from huge overages. With the perfect blend of ‘sweet’ and ‘annoyance’ I believed I would win what I was after.

We were all set to go to the hospital a few days after Dan’s Hickman surgery. They had reserved a bed under his name. In my prior ignorance I used to think that cancers were all the same, just named differently, therefore chemotherapy was a standard drug to treat them all. Little did I realize that cancer hospitals play host to a lab of mad scientist creating experimental potions and theoretical mixtures to poison their subjects with and see what the outcome will be…..to live or to die.    

  The fourth floor would become our hotel for 3-4 days a month.  The potion prescribed to Dan would be a mixture of cisplatin and doxorubicin, both as nasty as they sound.  Cisplatin named for platinum, the substance being pumped into the body, was reserved for the more rare and deadly cancers due to its harsh nature.  The clear liquid carried high risks of permanent side effect such as nerve damage, kidney damage, hearing loss, and ironically cancer. Dan signed the waiver signifying he understood that the treatment to kill his cancer could cause him more cancer.  Doxorubicin carried the nickname of ‘red devil’, or ‘red death’ because of its bright red color and risk of life threatening heart damage. Most patients who fit into the risk category for doxorubicin would not survive any complications. Both drugs would continuously drip into the tube that fed directly into my husband’s heart over a two-day period each time we would be scheduled for chemo.  The pre and post treatment to the chemo kept us between a scheduled 4-7 days total at the hospital.  Vitamins and potassium bags were required for several hours before and after the chemo would be administered. 

Because we had an infant and were first timers to ‘Huntsman chemo camp’ we were given the best room on the floor. A double ‘celebrity’ suite with full amenities, including two full rooms, refrigerators, two televisions, and two double fold out couches.  Cherry hard wood floors, along with crown molding made it feel nicer than our own home. I knew the luxury and beauty of these rooms were meant to offset the horror being experienced in them. We were still rookies in this game and had no idea what to expect.

We decided a tour was in order because we would be waiting almost 6 hours until the prescriptions came through and all appropriate tests were taken before injection time. I had arranged for a relative to take our older son for the weekend to spare him any inkling that something terrible was going to happen to his daddy.  Although grateful I found someone to take him, it was hard for me to turn my non-talking, still potty-training, not yet three year old baby over to someone else.  I wanted him to be with me, and the rest of our little family. I can only imagine what was happening to our little boy that year as he experienced so much change and upheaval in his small little world. From days spent with his mom, to a new baby replacing that time, to having no dad around, to rarely seeing his mom, and practically living as a foster care child, it broke my heart that I couldn’t do anything to change it for him, and knew he would be forced to grow up faster than he should have to.  Because I was sensitive to this I tried to shelter him from as much as I possibly could. 

We left the baby asleep in our secluded room and took a stroll down the large carpeted hallway, holding each other’s hand.  Nothing seemed real yet, it felt like a stroll through an upscale air conditioned park.  It was quiet and a peaceful feeling was there.  All the rooms were oversized and came with a view of the valley.  Several patients had left their door open exposing a preview of what would surely come for us.  They looked tired, scruffy, and faces full of distress. There were no balloons, laughter or smiles at this hospital, people didn’t come here for a one-time visit or fix, they came here to stay, they came to call it a home away from their home.  After passing a couple more doors we both turned around and walked back toward our room.

Dr. Chen was there.  She came to greet us.  “Come”, she said, “I think they need your help.”  Huh? What was she talking about? Who could possibly need our help?  No one here knew us. She ushered us into the wrong room.  A middle aged man and a woman were sitting on a loveseat facing the view through their window.  They had moved the couch away from the wall and had their backs toward the doorway and us.  “Here they are”, she announced.  Dan and I watched them turn around as the woman stood up to come meet us.  Her husband was tethered to a machine and tubes. He didn’t move.  She introduced herself and welcomed us into the room and over to meet her husband.  Feeling awkward now I wondered if this was hospital initiation.  Do we pass if we aren’t freaked out about how horrible he looks and keep our reactions normal?  What would be the prize…… free chemo at happy hour?  We said hello to the man.  His facial hairs were overgrown yet patchy.  He looked old, even though his wife seemed young.  She pulled out some papers while I tried to avoid eye contact.  I was more focused on the bags of his chemo, one thick and milky white, like gel.  How could that be filtering into a vein? It seemed painful. The machine pump made a low rocking noise every few seconds as it pushed the drug into the tube feeding into a port in the man’s arm. This rocking noise would soon be a metronome haunting me every time we would visit the hospital.  I wondered what type of cancer he had; he hadn’t lost his hair and had a port in his arm underneath the skin instead an external one coming out of his chest like Dan.  Dr. Chen left the room and we were alone with these strangers. The woman explained that they needed a witness signature for a ‘Living Will’ they were drawing up. Oh no, I thought, why would they ask us for that.  Couldn’t she see that we were scared, and this was our first time here?  This WAS initiation…..’sign here to play God please’.

We watched them each sign the papers and turn them over to us. We signed our names to the witness line, shook their hands and walked for the door. I looked back as we kept walking to see her sit down next to him and wrap one arm around the back of his shoulder and resume peering at the view through the window.

My body gave a shutter after we were safely back in our own room.  

“That was creepy”, Dan said to me with his eyes widening as he plunk himself down on his over-sized bed.  I agreed and went to lay down with him while we waited for our turn, we were now in no hurry.  We didn’t say much to each other, but just lay there side by side, our hands clasped together between us and my head resting upon his shoulder. I was careful to not put pressure on his chest near the painful tubes cascading down his ribcage. He turned his head to mine and kissed me on my forehead.  I snuggled closer to him with my eyes shut trying to imagine we were back at home. Visions of Dorthy and her red shoes danced in my head convincing me that if I just clicked my heels together this would all be a bad dream and I’d wake up, releasing me from this hell. Dan continued to give me small kisses of reassurance on my head and face while his eyes scanned the room and his thoughts busy contemplating life.  I felt the peace a wife needs from her husband; protection from her fears and worries.  That would be the last time he would hold me, the last time I would feel we belonged to just each other.  The cancer would soon grow within our marriage and eat away at us just like it did to the bone in Dan’s hand. We had contracted ‘the small grade cells’ that travel slowly, undetected, and ultimately destroy everything in its path.

Surviving Cancer, My Story: Part 8 'Take a number please'

Part 8: 'Take a number please'

We were given another appointment set for three weeks later.  What is the deal, I thought.  Here we have this rare fast growing cancer eating away at my husband day by day, yet no one besides us gave it the seriousness it demanded.  “Why do we have to wait that long”, I asked Cherry,  Dr. Chen’s nurse. “That is the first available appointment that the surgeon has for this type of procedure”, she explained.  Surely there must someone else in the Utah Valley that could schedule him for this supposed simple procedure sooner. than what we were being told. I asked her a list of questions before she informed me that only certain surgeons and sometimes radiologist were allowed to insert a Hickman due to its potential complications and precision needed. “Okay then, I want to make the first appointment we can schedule with the Radiologist”, I insisted. 

She was unable to give me anything on his schedule earlier than the following 2 weeks.  This part of the cancer journey was by far the most frustrating.  For all the modern medicine out in the world for rare diseases like cancer it was literally impossible to get them scheduled in a timely manner.  The excuses to the delays were as ridiculous as, ‘your insurance still hasn’t sent us approval for this test/procedure so we either need cash in full beforehand, or to wait for the insurance to response’, or ‘the few amount of doctors we have on staff who can get you what you need are all booked up and you’ll have to wait your turn’, and ‘well we know it’s your week to get your chemo but we ran out of beds so please call back each day to see when one opens up and we will try to reserve it for you.’

How is anyone suppose to get better or have a fighting chance if the tools they need to overcome the disease are kept from them?

I knew that even from the beginning I was going to have to get strong, and demand the attention we needed. 

 Otherwise suffer the fate of negligence that would affect my children and me the most.

“Please give me the Radiologist direct number”, I politely asked.  I called and explained the urgency of getting the Hickman for Dan. I even asked to be placed on a cancellation list.  We only waited a couple days before we were fit into the schedule.  Dan would get his Hickman and be eligible to get his first chemo in less than a week.

The procedure itself ran a high risk of complications; therefore Dan would be kept awake during the surgery preventing mistakes from going unnoticed. My father in law had come into town just for the surgery date.  Historically in our marriage my in-laws created friction between Dan and I. In 5 years the visits were few and far between, void of peace and good memories.  No woman that had married into their family seemed to be ‘good enough for their four sons’ and they had no problem showing their disappointment, leaving my sister-in-laws and I wagering whom they hated most.  I was glad to finally see them support us in something since we had gotten married.  I didn’t know it at the time, but this would be the beginning of the loyalties between husband and wife coming to a close.

The morning of the Hickman surgery was very stressful.  My father in law was on his way up to our house, and both kids were either crying for attention or needing something from me.  Dan was on edge and moodier than the kids.  I just knew we had to get through the day.  The stress in our home was mounting, and headed toward explosive disaster. Right before we were to pack up the car and head to the hospital an insignificant argument broke out between us.  The argument was clearly a distraction created in lieu of dreading going to the hospital again.  He stormed out of the house.  I was baffled at where he thought he was going an hour and half before our appointment.  I packed up our small children, and a bag of books and snacks to keep them busy. I was now playing mommy to three kids instead of just two. I would have to track him down to get him to the hospital.  I found him stomping down the main road of our neighborhood with a scowl on his face.  If things in our life weren’t so serious at the time I might have laughed at his child-like behavior. I slowed the car and rolled down the window.
 “Where are you going?, are you walking all the way to the hospital?”, I said half joking, half mad.
 In the last few days I had started to feel him resist the inevitable course we would need to be on to save his life.  His only response was, “Leave me alone!”  I continued inching the car along the sidewalk waiting for Dan to realize I would follow him at this pace all the way to California if I had to. 

“Well if you were going to run away from home then it was a really bad idea not to pack a lunch…..you might get hungry later”  I was trying to use humor to lure an adult child throwing a tantrum into reason and logic so he'd let me take him the hospital.  He wouldn’t let up, and my efforts seemed to give him reason to point his anger toward me even further.  I would become the blame for my husband getting cancer from that day forward, my in-laws in full support of this ‘theory’.  I felt like enemy #1.  Dan soon turned around and started storming back to the house. He dialed someone on his phone and disappeared around the corner of our street.  I stopped the car for just a minute on the side of the road. I was so tired, and my mind full of thought.  I pulled the car in the garage and went in to find an empty house.  Out the front door Dan was sitting on the porch. Before I had a chance to go out and try to smooth things over I saw my father in laws white van pull up through the window and Dan jump in the car.  Was this a jailbreak, aided and abeded by his own father?  I dialed his mobile number. His father took the phone and hastily told me that he would take his son to the hospital, I wasn’t invited to come and then hung up the phone.

 In tears I called my own mother for support and asked her to come be with me.  She arrived at my house and took the boys and I up to the hospital.  I found the Radiology department while my mother took my kids for a walk around the hospital grounds. I saw my husband sitting in the waiting room.  His father was sitting next to him on one side and I took the seat on the other.  The waiting room was packed full, some dressed and waiting, and others were patients in hospital gowns. I couldn’t grasp why Dan’s father would encourage his crazy behavior. I refused to let dwelling on it take priority over an appointment that was not only scary to Dan, but that was just as scary to me. When the nurse called Dan’s name, he stood up. I could see his father start to push away from his chair.  I quickly jumped up and ran over to Dan’s side. I knew he could only have one person go back with him to the surgery room. I grabbed his arm and followed him down the hall.  Anxiety had calmed his anger and he turned to me for comfort. “I’m really nervous”, he said.  I listened to him tell me he didn’t want to be awake for the surgery.  They would be making an incision in his neck and jamming a tube down a tunnel to his heart, hoping to not get stuck or damage other organs on the way down.  The tube would be routed through the right atrium of his heart and come out of his chest fastened with two external ports. Such a dangerous procedure would make anyone nervous. 

He lay down on the table.  I kissed him and told him it would be alright before he was wheeled away. I had several hours of sitting in the same room with a man who had earlier invalidated me as partner to my husband, in life as well as in this cancer journey.

I watched all the sick people sitting around me. It was really a horrible sight.  A vision of what our own future would hold.  People sick, worn down, and depressed by the disappointing lots they drew in this life.

After what had happened I loathed my father in law, and decided to move to a seat as far away as possible from him.  The nurse soon came in and called Dan’s name to see who was there to claim him.  I again jumped up quickly, holding the bag provided by the hospital to put Dan’s street clothes in.  

(Dan's Hickman port)

When I went in the room where Dan was recovering, I immediately noticed the thick stitch line on his neck. He could almost be mistaken for a bullet wound victim.  He was permitted to sleep right after the surgery for a short time to help him relax and accept the new addition to his body.  I sat by him and held his hand for a while, waiting for him to wake up.  I wasn’t eager to get back to Dan’s father, and the drama that was always associated with him.   

I didn’t need more stress in my life. I needed to feel some of the burdens I was carrying lifted.
  

He started to stir a little and I knew he would be awake soon.  I mentally prepared myself to be positive for him.  It wouldn’t be that different from a child who falls down and looks to him mom’s reaction to know how he himself should react.  His hand reached over his chest and he examined the change by touch.  He finally opened his eyes and looked down.  The nurse removed the bandage so I could help him get dressed.  Long tubes, exposed, hung down his chest from his insides out.  It wasn’t natural, and gave me a desire to tug on them until they came out. The instructions were that it could never get wet, or infection would surely enter, and go directly to his heart.  A cleaning of tubes would be required twice a day with a substance called Hepburn, which would be done by me.  I would learn how to use syringes and medical devices like they were common household appliances.

Dan rode home with me in our car and with our kids, instead of with his Father.  I felt united again after a day of chaos between us.  The incident was never spoken about between Dan and I, or our parents.   

The damage being done to our relationship and us would be irreversible and wreak havoc on my emotions permanently.

He immediately went to bed when we got home, while I continued tasks like feeding the kids and starting laundry. I was tired and wished I could go lay down with my husband.  Although I was still mad at him for how he had acted earlier, I wanted to pretend that the incident hadn’t happened and just utilize our time together the way we should have, making every moment count.  I knew that what had happened today was just a taste of the awful things we had signed ourselves up for.  There would be plenty of hard times at the hospital, which would surely mean hard times for us at home.  I had to figure out a way to minimize those difficult times in an effort to keep our family together and our relationship alive.  Little did I know the true effects the cancer would have in store for me and my family.

Surviving Cancer, My Story Part 7: Will you remember how much I love you?

Part 7:  Will you remember how much I love you?

(Dan and Cole, right before Chemo)

We started making phone calls and sending out the emails revealing the news about my husband’s cancer.  Oddly enough we weren’t really alone on this front.  We had two young neighbors who had cancer the previous year, both in remission at the time we got our news.  One had suffered from breast cancer, and the other had cancer in his throat.  I had no idea at the time how significant their stories would play into mine later on.  I remember hearing about our neighbors four houses down the street. Not knowing them personally, the announcement of a young 30-year-old man receiving cancer news didn’t strike me the way that it should have. I probably allowed myself to say, “that stinks” and then went into the kitchen to make dinner.  

I regret regarding other’s tragedies as a minor inconvenience.

My husband and I were both surprised at the how easily our families took the news.  I wondered sometimes if they had heard us say the word ‘cancer’.  Maybe they were thinking, “it’s just a little cancer, no big deal”. What is the appropriate response anyway? The members of our church congregation were sympathetic and concerned, but when Sunday hit I felt as if all eyes were on us as we entered the room.  We were now wearing the dreaded scarlet letter, only it was a “C” for Cancer.  Looking back I am positive that this was more of a self-projected fear than actual reality.  Feeling normal was just not an option when there was a loom of uncertainty following us everywhere we went.

There were lots of tasks to complete before we could begin doing chemo. Now that my husband’s life was on the line, we had to explain to our son that daddy was sick and would be away from home a lot and would not be able to play with him anymore.  The weekly daddy/son swim dates would end as well.  My husband would be getting a double Hickman placed in his heart as soon as possible, which would not allow for anything but sponge showers until it was removed. We decided to get our family picture taken.  No one said it out loud, but if he were to die it would be the last opportunity for us to have a healthy looking photo to remember him by. Our doctor recommended the embarrassing task of banking storage of my husband’s sperm. This was a special prescription strongly urged since we were still a young couple and would surely want more kids. The chemo he would be getting was equal in strength to what Lance Armstrong underwent to rid his body of over 12 large masses throughout his various organs, including lungs and brain.  Our chances for conceiving after the treatments were slim to none and the hospital did not want liability for that.  There would be a minimum of 3 appointments for this at a whopping $100 per deposit along with monthly fees while the storage was active.  With an infant in arms sitting in the waiting room at the clinic, also doubling as a fertility treatment center, I felt the stares of the women in the office desperately trying to get pregnant. It was as though they were saying, “Why is this lady here, she already has a baby?”  There was paperwork I had to fill out and sign agreeing to be the beneficiary of the deposits in the event of my husband’s death.  Although having another child was not even close to being on my mind at the time, I wondered if there would even be a future to consider additions to our family. We had talked about having six kids when we got married and I was realizing I may be left with just two boys. I felt sorry for myself.  My husband had cancer, and I may never have the little girl I so desperately wanted.

(Dan holding baby Ethan a few days before Chemo)

My husband got off the phone with his work after explaining to them he wasn’t going to be coming in for six months or longer and needed to start disability leave.  There would be a week without pay before we qualified for the benefit–a type of punishment for our becoming such an inconvenience to society I guess. 60% payouts of our income hardly covered our bills, especially with diapers and formula added to the expenses, not to mention the monthly storage fees for our unborn children.  Would I have to get a job? There would be no way I could work, and take care of my sick husband and the boys at the same time, barely a month after having my own surgery.

The only thing we could do was exercise some faith and hope the finances would work themselves out, but of course they never do.  We were never wealthy, or lived a lavish lifestyle, but always had enough money to be comfortable and were never left wanting.  This made it especially hard to be in the position where help would be necessary.   Thankfully, our church stepped in and set us up on their welfare program.  I was grateful, but deep down inside I was embarrassed, and annoyed.   

We were starting a very public medical battle, one you can’t hide when your bald, thin, and look like your knocking on death’s door.

The position of needing help forced us to wear all other aspects of our lives on our sleeves for everyone to see and make whatever judgments they wanted.  I was humiliated to say the least about our financial predicament.  The era where ‘everyone else knew how to make better decisions than us’ began.  I felt judged. I realized this when our church leader told us we ought to be grateful for the two kids we had and told us to immediately destroy our ‘new kid storage’, sealing the fate of our never having any more kids if we were to survive this horrible injustice. Was I really expected to give up my agency just because we won the lotto of worst diseases? Again it seemed more of a punishment than a hardship.  Every week we would have someone coming over to our house to scrutinize what groceries we would need and write-up a food order for approval before we could get the limited items we needed. There would be no more grazing aisles at the grocery store looking for food we might be in the mood for that day, or snacks our son was used to having every day which were now considered a luxury item, and not a necessity. I almost hated this more than I hated the cancer. I would have such little control over anything from this point on in my own adult life. I knew my attitude was bad, but I didn’t care. No one wants to be a charity case.  I felt like I was being forced back into childhood where you need a mommy to manage your life because you can’t do it for yourself. My own health was not good as I suffered from Poly Cystic Ovarian Syndrome (PCOS), a liver malfunction that mimics diabetes resulting in insulin resistance. As long as I ate a strict diet of range free, organic, and low carb foods accompanied by daily exercise, my body resumed normalcy. I was accustomed to being picky with what foods I bought and ate to maintain my health. My options for managing my own health went away now that I was enlisted to take care of my husband and was at the mercy of others.

We had so many T’s to cross and I’s to dot that it was impossible to keep the details of what was happening on the down low.  The first couple of times I told the current events I would melt down into tears. Soon it became routine. I resembled a broken record; I became emotionless.  This survival technique made it possible for me to be normal everyday.  It was as if I was talking about our neighbor or someone else, when I was really talking about my family.  These problems weren’t mine, they were someone else’s and I was merely gossiping about it.  In this way I could give others the comfort they needed to not feel awkward around us.

I only remember two things we did as a family before we started the chemo journey.  We needed reminders that we were still the same family as we were before we got this terrible news. We needed down time from all the stress.  I posted a blurb about taking our kids the movies on my mommy blog.  This was the first lesson I got that people were indeed watching our every move. We got a phone call from a church leader who scolded us for spending any money on such wasteful activities. Being on the receiving end of assistance qualifies everyone else telling you how and when you should spend your time and money.  He had received a phone call from someone who had read my blog post and was upset that we would spend any money while we were on welfare assistance.  He refused to tell us which one of our neighbors felt this way. Surprisingly this didn’t make me mad, it just really hurt. $11.00, was the grand total spent on the matinee.  I don’t remember what show was playing, but the genre was of the kid variety. From this point on we would be under quarantine, locked away in our house, watching our back as to not create reasons for people to idly gossip about our situation. I stopped blogging that day.

(Cole and daddy)

Our family picture day was the second good memory amidst the storm.  It was at a park. The natural environment made it easy for us to let lose a little.  Over 100 pictures were taken, with us traveling to different areas for variety.  With each new shot came feelings of happiness for us because we were wearing smiles for the camera. Soon it was like the camera wasn’t even there.  We were just a family at the park spending time with our loved ones.  We did love each other, and the soon battle ahead would threaten those bonds and take priority away from it.

My husband was standing by the pond with our 3-year-old, holding his hand staring at the swimming ducks.  Cole didn’t talk much at this age and communicating with him was frustrating to us both, but they looked serene. I watched them for a while. I let them have time to create the moments that would be important to Dan later.  He crouched down so that he was right next to his son.  Still holding his hand he looked at Cole and began to speak softly, as if he were asking, “will you remember how much I love you” while his thoughts finished the sentence with “…if I die?”  I knew this was on his mind.  I could feel his soul whisper it to me while we were having our picture taken without our children.  We faced each other, exchanged a million thoughts while not one word was spoken between us.  Any hard times we had in our marriage up to that point were forgotten and dismissed as unimportant.

That day I accepted that he would have an amputation. I just didn’t want him to die.

Dr. Chen’s office called to schedule a surgery for the Hickman placement. A long tube with two ports coming straight out of his chest from his heart would be access the chemo would require.  It was too powerful for regular veins and would need immediate disbursement from his heart valves into the blood stream. This was the only way to prevent his veins from melting in the process.

 The Hickman would be our new best friend and worst enemy.

Surviving Cancer, My Story Part 6: 'You Promised You Would Never Die'

Part 6:  "You Promised You Would Never Die"

Our families and most of our friends, though caring for our situation, couldn’t see how much help we really needed at the time.  I must have made 9 phone calls before I found someone who agreed to watch our small children while we went to 2 different hospitals. Asking and finding those who were willing to help us would be one of my biggest challenges during that year.  I never fathomed that asking for help could feel so bad. Every time I went to dial a new number I got a twist in my stomach and started a ritual chant, “please don’t say no, please don’t say no”, in my head. It was easier to hire a teenage babysitter than face the rejection of adult relatives and friends under such dire circumstances. The ratio of “I can’t” to “I can” was astonishing.

I was grateful and relieved when my cousin agreed to watch our three-year old all day. I wasn’t accustomed to leaving him for long periods of time with anyone.  I worried about how being away from me this much was affecting him.  Before the baby and my husband’s cancer it was just the two of us and he was my world.  Our days were filled with the simplicity of taking walks together, reading books, going to the park, and engaging in our scheduled play dates with other children his age. I often found myself napping with him at nap time. It was strange and unfamiliar to have things turn upside down so fast.  Not only was my life sent into crisis mode, my poor son had to give up the comforts and routines he’d known his entire short and simple life.  None of this was explainable to him, and being passed around to mostly strangers for full days undoubtedly affected him.  Barely one month old, the baby came with me everywhere.  His car seat became his crib. Change wasn’t welcome for any of us.

It was not easy for me to adapt, and it seemed my life was unraveling at disastrous speeds.

On the way to the hospital we called to confirm our paperwork was in. “Yes there is a large manila envelope waiting for you at the front desk”, the nurse said, well aware of who we were at this point. We pulled into the parking lot and decided there was no point to both of us going in to retrieve it.  Our appointment at Huntsman was in one hour and we were eager to get to a facility that fostered panicked cancer newcomers.  My husband returned to the car with the envelope still sealed. We already knew the contents would permit us the cancer appointment but we were still desperate to have ‘the golden ticket’ with the words spelled out for us: “High Grade Myxo-Fibro Sarcoma”.  I had no idea what I was reading. Dan opened the envelope but couldn’t bear to read the results so he had handed me the pile of papers. I was surprised at how foreign every sentence read.

 

Huntsman Cancer Institute

Our car pulled up to what would soon be our new home away from home, ‘Huntsman’ –named after the governor’s family.  It was the most beautiful hospital I have ever seen, more like a hotel. We were greeted by valet parking and I quickly pulled our infant from the car and headed for the doors. Aside from the valet attendants and front desk staff, we were the only young people I saw. As we entered the elevator a bald-headed woman in a wheel chair smiled at our baby and motioned for me to lean in so she could take a closer look.  Something new met something worn; it broke my heart.  I wanted out of there quick. The man who had set the appointment greeted us as we approached the Sarcoma wing of the hospital.  He wasn’t lying to me about wanting our paperwork before he’d permit us see Dr. Randall. We eagerly turned over the envelope along with the chest x-rays, MRI’s and CT scan which had all been preformed the prior week.  No less than 20 pieces of paper were presented to us to fill out and sign while we were left in a large open waiting room. The hospital offices were the gold-standard of doctor facilities. Everything was much bigger and nicer. I could tell by our surroundings that cancer was big business.

 

Dan and I at our Huntsman appointment.

There was a sense of relief as we sat in this larger than life, specialized hospital that was dedicated 100% to cancer patients. Stress left and concern flew out the window while we waited for our turn.  I took out my camera and started taking a few pictures of my baby. My husband grabbed the camera from me with his good hand and stretched out his arm. He flipped it around and commenced a photo shoot of the two of us.  His playful goofy side had returned and I remembered why I married him. “Try to be cool in this one,” he instructed, pulling face after face. I played along. I didn’t even care that I was barely a month postpartum–a woman’s least favorite time to be photographed.  His silly demeanor brought intimacy back between us after a week of literal hell.

After a 4 hour wait, a team of doctors entered the room. They all introduced themselves, each possessing a unique specialty. Dr. Randall looked over my husband’s hand with complexity in his expressions.  He reviewed our notes and began to give us ‘his opinion’. We expected to hear what we had already heard along with a plan to save my husband’s finger from dismemberment.  I knew this doctor would fix everything even if over a lengthy time period. He would be our salvation and would put humpy dumpty back together again.

My delusional thoughts of a happy ending did not prepare me for the cold hard truth about to hit me in the face. “I recommend that you enter a course of chemotherapy for 6 months and possible radiation before we do a ray resection of the 4th metacarpal of your right hand…” he rambled on although I stopped listening when I realized what he was saying.

My husband continued listening intensely as the doctor still held his hand as they spoke. How could he be saying we had to go to such extremes? This couldn’t be right, I thought. “Well, before we move forward, we might want to get a second opinion if that’s alright,” I interrupted.  My husband seemed to agree as he moved his wounded hand from the doctor’s grasp to mine. “I think if you want a second opinion you should definitely get one,” he responded. “I can give you the numbers of doctors who would be able to treat your complexity of cancer.  One is in New York, the other, Texas,” he went down the list and explained that the rare specialists who were qualified to treat a sarcoma in the hand amounted to about four doctors total nationwide. They all sat on a specialized board with one another for case studies and were close colleagues and friends. My hope for other options diminished. Ever since I had heard the first doctor tell us that my husband would lose his finger I had become obsessed with finding a way to not let that happen. I had no idea that it could be the least of our worries in the long run. I asked the doctor if there was any chance that the outcome would change and an amputation not be necessary. He saw that a real explanation was in order and that I needed to have that before I could be at peace with what we were about to endure.  He pulled out the X-ray and did what our previous doctor should have done. In the next 5 minutes I learned the words “high grade” meant emergency cancer; it was code for fast growing.

The reason my husband’s hand was missing a bone only after a month was because the cancer had gotten in the bone and ate it from the inside out.

Sarcoma’s are the most rare and deadliest forms of cancers. They only account for 30% of all cancers and within the Sarcoma family the kind we were dealing with only accounted for 3%. We later tried to ‘google’ the cancer we were diagnosed with zero results showing up. Our predicament was the outcome of a chain of events. The growing tumor had put pressure on the fragile and complex bones in his hand. When the bone broke it punctured the pea sized tumor. A tumor is like the yolk of an egg, and when punctured it had leaked cancer cells right into the bone marrow exposed from the break.  The cancer ate the bone from the inside out and was now threatening all other components in his hand, blood, muscle, bone, and tissue. The hand is extremely delicate and intricate and so was my husband’s form of cancer.

It was in that moment that I began to grasp the severity of what was going on.  No wonder he was talking about chemo. I was under the impression there would be a swift amputation at worst and then life as usual.  Again my mind reeled at what I was hearing and forced to have to accept as real.  Cancer was leaking all over my husband’s body and it had been exposed to his blood stream for a month. “You have a 50/50% chance of beating this thing,” the doctor said pessimistically while bringing to light the reality I had never considered.

  My husband could die.

I did not see this coming. The rest of the day was spent going through the motions of meeting Dr. Chen, his chemo-therapist doctor. She was a very sweet older woman. Her job as she explained, was to take my husband as close to death as possible– several times –in order to kill the cancer. The art was in keeping him alive. The high-grade factor in our cancer diagnosis was something chemo, nor man-made treatments could kill. The goal was to stunt its growth by killing the slow grade traveling cancer cells. Then it would be safe to remove the affected area. We also learned that my husband would not just be losing his finger.  There would be a chance he could lose his whole hand, and even a part of his arm. In short, if you have a sarcoma you are not getting out of it without some sort of severe amputation or being buried in the ground. The only good news was that there was literally no way the cancer would be passed genetically to our children because of its’ rarity. It was no more than a stroke of really bad luck.

Silence had again resumed between us as we drove to pick up our older son.  Memories of our short marriage shot through my mind. One memory in particular stood out.  Five months into our marriage we had an argument that left us in different rooms avoiding making up.  We were both content with being ‘right’ and waiting for the other person to realize it.  Earlier that week my husband had purchased a movie made after my favorite childhood book “Charlie”.  I decided as long as we were fighting I would start watching it while he cooled off in the other room.  Half way through the flick he had come out of the other room, probably to see why I hadn’t come to make-up.  He saw me watching the show and sat himself down on the opposite end of the couch. He started watching the movie in almost a defiant act against me being able to enjoy watching it myself. There was a child-like hostility between both of us as we sat with our arms folded watching the movie together yet separately.  I knew the plot of the story we were watching even though he did not, but watching it on-screen made it more real. Boy meets girl, they get married. They have a baby and a year later she gets sick. I painfully remember my anger toward him leaving me as we watched the movie unfold….I know the same was happening to him. Young, full of life, and in love, she passes away.  The shock and horror yet beauty of this story left us both in tears over our fight.  We never resolved the argument but ended up holding each other and making the other promise we’d never die.  It was juvenile and childish, but so young in our marriage we didn’t comprehend what was important and what was not.

As I sat in the car replaying this movie night ‘fight’, I felt immense anger building up inside me. My teeth were gritting and I could feel tears welling up in my eyes.  My husband had been watching me out of the corner of his eye while he drove. “What is it?” he sounded confused. “Why do you seem like you are mad?” I couldn’t force my thoughts down, “You promised you would never die!” I shouted out.  A full-blown cry session had now began.  He could see my obvious pain and knew exactly what I was talking about.  His reaction was to laugh, almost ridiculously. He grabbed my hand with his cancer-ridden hand and squeezed mine with his good fingers as well as he could.  “I cannot believe you are mad at me for getting cancer,” he said.  I looked at him with my cried out blurred vision and started laughing hysterically until I found a healthy balance between sobs and laughter.

How ridiculous it was for me to be mad that he got cancer. How else could I handle my predicament?
  My girlish dreams of being mommy and wife to the perfect family were about to be shattered.

I was facing a loss of a husband, being a single mother, and carrying the burden of how to provide a life for two small innocent children….. alone.