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.

FiRsT DaY oF sChOoL: 2nD GrAdE

Surviving Cancer, My Story Part 5: 'Lady, cancer is an emotional emergency, not an actual one'

Part 5:  'Lady, cancer is an emotional emergency, not an actual one'

Friday came, but there was never a call. Not one from the doctor’s office anyway. Dan was at work while I spent most of the time with my kids, anxiously waiting for the phone to ring. Our doctor had promised he would call Friday morning, noon at the latest. By 2:00 I decided I couldn’t wait any longer. I impatiently dialed the hospital number. A nurse answered. I explained who I was, and what I was after. “I am waiting for my husband’s biopsy report, but haven’t gotten a call from your office yet. Can you check on it and see what the status is?” I asked as nicely as I could under the circumstances.

I was placed on hold close to 10 minutes.  My kids were on the floor watching baby Einstein. I was annoyed that I had to track down medical records we were promised to have had by now, but this was par for the course with doctors. Waiting for  ‘the word’ is not just an exercise in patience, it’s uncomfortably sitting on pins and needles. My husband and I had not talked all morning. Most days while he was at work we spoke over the phone at lunchtime to check in, and say hi.  We dreaded the news that we had both come to feel we would receive.

She finally came back on the line to tell me they hadn’t returned from the lab yet. “The latest you’ll hear back will be Monday.”  The tone of my voice started to adopt an edge, “Why is taking longer than expected?” She put me on hold again. My eyes rolled into the back of my head as my thoughts played out why the results were taking so long. Whoever said ‘no news is good news’ had to be an idiot, because what I was experiencing was not good at all. After several back and forth attempts to find out why, I convinced her to tell me which lab in Salt Lake City the biopsy was sent to.  I knew I had to either push my way through the system or live the weekend while painfully waiting in the dark for Monday to arrive.

I looked up the lab where the tissue was originally sent and hastily dialed their number. “I know you can’t give me the results over the phone.” The annoyance in my voice was starting to show. “Can you please just tell me why it is taking so long to get back to the doctor.” My questions started turning into a quiz of how the lab policies worked and what the standard time frames were for a biopsy test.  Our doctor had put a rush on the order and there was no reason it shouldn’t be back by the projected time.  It seemed no one wanted to help.  Although not personal, I felt like a number in a sea of ‘cases to be filed’.

 In the medical field, emotions affect nothing. Things will be what they will be no matter how hard you cry, no matter how much you want for them to be different.

Finally the technician passed me to a supervisor after realizing I wouldn’t get off the phone without answers. This was the third time that day I had told the same story, just to a different person.  I was starting to sound monotone. She gave me the same response I had heard from everyone else, “I can’t give out the information you are requesting, it’s against the law for us to release it.” There was a short pause and soft plea from my end of the phone, “Please, won’t you help me? I am desperate….” I heard the sigh on the other end of the phone and she asked me if I could hold on while she went and got my husbands chart. She came back and although she couldn’t tell me what was going on in exact detail, she gave me enough information to know what kinds of questions I could get answers to. “The sample isn’t at our lab anymore, it looks like it was sent out. That is why the results haven’t gotten back to your doctor yet.” Why would the sample have to be sent to a second lab I thought, “Where was it sent?”  I could hear her flipping the papers in his chart to find the small amount of information she thought would be okay to give, “It says it was sent to Sloan Kettering Memorial in New York.”  What was it doing in New York? I couldn’t wrap my mind around why that sounded familiar but knew that is was the next place I needed to call.  I expressed my sincere thanks to the woman for being the first person in a week to make me feel like I was human.

I sat on the couch letting the name of the new hospital replay over again in my mind. It was literally 20 minutes of saying it over and over again until the words ‘cancer center’ came after it as if the two belonged together; Sloan Kettering Memorial Cancer Center.  I had heard the name before, and instantly knew my intended phone call wouldn’t be necessary. It confirmed the 90% chance in my mind that my husband did have cancer.  It hit me like a bullet entering my chest, and then I went numb.  Time stopped, and I started having an out-of-body experience. I tuned out everything around me and although my thoughts were active, time stood still. A tear left my eye, and I snapped back into reality. My whole body began to shake and then the I started to cry. I laid on the couch as the tears rolled off my cheeks in steady streams. I couldn’t believe what I was being forced to imagine.  Only old people get cancer. How could this be happening to me? I picked up the phone and dialed the number of my best friend. She was the only one I knew I could be completely open with, have a meltdown on the phone to, and not have my situation be downplayed by. I just couldn’t bare to hear someone say, “Don’t worry, it’s probably not that bad,”or “It’ll be alright”.

 I needed someone who could really listen to me and acknowledge my fears were real.

I desperately recounted the unsettling situation to her. “What am I going to do?” I asked.  “How am I going to have a husband and two babies to take care of?…. I can’t do this.”  She listened and consoled me instead of telling me I was over-reacting.  A reminder to pray for comfort was mostly what I remember from that long conversation. How could she tell me it would be okay when she had no idea if it would be. I hung up the phone and ran to my room.  I knelt on the floor next to my bed and prayed like I never had before. I’ve always been very spiritual, and religiously devout, especially after becoming a mother, but I’ve never prayed for something as intensely as I did then. I plead first for comfort, second for my husband not to have cancer, followed by questions of 'why’.  My racing heart started to slow and a humble feeling came over my body. I started sobbing again, and finally asked for the strength to be able to accept the fate of whatever was supposed to happen. Before the prayer was over I had felt the comfort come.  My thoughts changed from, ‘how could God let this happen’ to ‘sometimes bad things happen to good people.’

As a returned missionary for my church I had heard this a hundred times. Now my faith would be put to the ultimate test. The hang-ups that people had against God and religion tied into injustices in their lives, especially medically related, and deaths premature.  My effort in trying to help them overcome these stumbling blocks in their faith was to explain that not everything happens for a reason, but that hardships of the world and life were sometimes left to chance.
Bad things could happen to anybody, even when they didn’t deserve it.

Being subjected to the elements in the world and this life were meant to help us seek out God, not blame him.

I knew that sounded right, but didn’t want that to be true. Blaming someone would give me something to focus my anger on. I felt better enough to make the other phone calls I needed to make.  Sloan-Kettering confirmed the fax result deadline to be early Monday morning. I knew we would need a new doctor. The one we currently had left me with doubts in his ability to follow things through. He had promised to call us Friday morning, but decided to leave the office early instead. I could see his lack of concern for his patients.  If he would have ordered an x-ray using the specialized equipment in his office before hastily casting his hand, he would have seen the pea sized tumor and we wouldn’t be taking the severe route we were now forced to go down.

I looked up cancer hospitals surrounding the city. I wasn’t about to wait to get an appointment set up. Huntsman was the one.  It was the largest and most specialized and I knew we had to start there.  After 5 transfers and again explaining what was going on and why I was trying to make an appointment, I got the office for the doctor who would handle my husbands case. Dr. Randall was the medical director for huntsman and specialized in musculoskeletal oncology. I had seen him in commercials on TV promoting the hospital.  I was relieved to finally be in the right place as I had spent my whole day on the phone, and I was ready to turn this burden over to someone else. We went through the circumstances that led me up to this phone call and I was eager to get the appointment set.  After thumbing through his appointment book he gave me a date that was 3 weeks away. “What?!” I exclaimed. “We can’t wait that long! We have to have an appointment this coming week, no later than Wednesday.” He told me we couldn’t see the doctor without having a cancer diagnosis in hands and he shouldn’t even be making an appointment for me until we did. I explained the emergency we were facing and that there was no way we could wait. After all, an entire bone in his hand was eaten away in just  30 short days. I didn’t want to wait another 3 weeks to see what other damage this disease would do.

“Lady, cancer is an emotional emergency, not an actual one,” he retorted. To this day his comment was one of the most vivid things said to me during this entire ordeal. Here I was, in the middle of an ‘actual’ emergency, and I was not human. Although my anger was seething from within, I needed to get my way no matter the cost. My smooth talking skills took over as I persuaded him to set up the appointment for me anyway for the next available date. He was not kind, but made the appointment for Monday just to get me off the phone. I was quickly learning that in the world of cancer, that the squeaky wheel gets the oil. I was told we would not be seen on Monday without that paperwork from our doctor. I promised to bring it to the appointment with us.

I hung up the phone and was relieved to have something else to look forward to. I couldn’t live through the weekend with the looming panic of not having a plan put together. My husband came home from work, and I decided not to send him into a spiral.  I downplayed the news and events of the day, telling him loose facts about what I had learned.  The appointment I had made at Huntsman was just precautionary on my part and we would not panic or assume the worst until it was confirmed to us in writing.  He seemed at ease and I was determined to have a peaceful weekend together with him and our boys. I allowed myself to tuck away my worry and the chaos; we both needed a break from it. It would be OUR weekend together, a pre-vacation to what was about to come. Monday was only two days away. We could never predict that the new course we would find ourselves on was right around the corner.

Surviving Cancer: My Story, Part 4: Ignorance Is Bliss

 

(Our family, the year prior to this ordeal)

Part 4:  Ignorance Is Bliss

“Are you ready to go?” he asked me while holding the door to the garage open. We left our small children with my mother and headed downtown to St. Marks Hospital. 

 The specialist recommended by our insurance company for my husband’s break had been anxiously awaiting the MRI results from the previous day, as were we.  Up until a few months prior, we looked like the picture of the young American family; a husband and wife, starting a family with the world as our oyster and general happiness our mantra. Although average and void of perfection, our problems were manageable and far from being real.  We were on our way to having a second child, and saving to buy a house.

Looking back, I compare my respective circumstances to those of my peers at the time.  We knew people around us who were in the same boat, trying to carve out a life and find their place in the world. We also knew people who had real problems, struggling, who were going through hard times.  We could empathize when these hard times would occasionally be brought up in conversations between friends, but in general these circumstances didn’t directly affect us.

Lack of knowledge and personal connections kept us safe from the ugly things in life.

 ‘As long as it’s not happening to me, it’s not really happening’.

The phrase ‘ignorance is bliss’ would soon take on a whole new meaning in my life.

The doctor finally came into the room.  He instantly drew his attention toward me, and I to him.  What had transpired in the appointment between this man and my husband the day before was something I was determined to get to the bottom of.  He sat down on the physicians chair with one foot firmly planted on the ground and the other in sprint starting position: heel up and ready to spring at the first shot of gunfire.  He flipped open my husband’s chart.  He buried his face in the notes for a several minutes. The room felt cold, and uninviting. Why was he staring at the notes for so long? My mind was already going down a list of possible scenarios of what he could possibly say. The look on his face made it clear that he had no need to review the file. He knew what he had to say, it was figuring out how to say it which he hadn’t quite figured out yet.

His eyes finally came off the paper. “Well,” he sighed, speaking in a slow monotone manner. “The MRI came back clarifying the origin of the fracture in your hand.”  He paused before he went on, “There was a small tissue mass growing near the metacarpal fourth ray.” Again he paused, looking up to see how much we were going to press him to say, “The pressure from the mass caused the bone to gain stress, weaken, and then break.”

“So what does that mean?” My husband was anxiously waiting to hear something he could understand concerning his condition. The doctor sat further down in his chair, his heel now dropped to the floor.  “It means the break was not caused by you opening a door.” This was getting us nowhere and I could see this game going on for hours. “Are you saying that this “growth” is what caused my husband’s hand to break?” I interrupted. “Yes”, the doctor answered, realizing he had a gun now pointed at his head loaded with specific questions.

I finally blurted ‘the question’ I knew my husband wanted answers to but couldn’t bring himself to ask. “Does that mean he has cancer?” I almost felt stupid asking the question out loud.  I already knew that my husband didn’t have cancer.  My husband’s eyes became fixated on the floor. “The probable presence of cancer is extremely low, almost zero chance.  I have seen a lot of tumors in the hand which have all resulted in being benign.” I recognized the word but felt little relief. Benign was the opposite of malignant. A strong urge kept me asking the same questions in variant forms.  I’m sure it was annoying to the doctor, but I really didn’t care. We were talking about my husband, and in that moment I felt responsibility to rescue him. I couldn’t stand to see him be reduced to words on a sheet of paper tucked away in a folder marked confidential.

I pressed the doctor for the next course of action. Reassuring us that it was a standard benign tumor with need for removal, he still wanted to schedule a biopsy for the very next day. It all sounded so simple, so why the urgency of all these appointments?  I suddenly remembered that the bone in his hand resembled a dinosaurs’ half eaten lunch. “What about the bone in his hand?” I continued questioning away, “Will it just grow back and become functional again after removing the tumor?”  My husband’s hand had become useless, his ring finger almost a disconnected part from his hand altogether.  The bone that secured the finger to the wrist and connected functionality was now MIA. “No, it won’t.”  It was like pulling teeth to get this so-called professional to give us the facts, and give them to us straight. Regardless of the tumor being benign or malignant the repair of his hand would be no easy task. One outcome gave us a fully functional hand after a grafted hipbone surgery and a year of therapy. With its 99.9% probability of success, considerable talk about this course of action was had before my mind would allow me to ask about the other.

Finally I asked, “What happens if the biopsy comes back malignant?” I wasn’t prepared for the brutally honest answer I was about to hear, “Then he will lose his finger.” Spontaneously a moment of silence had commenced and continued to linger until we left the office.  The nurse set up the biopsy for the following day. The elevator doors closed and sound of our breath returned.  Blood came back into our faces restoring a normal color to our cheeks. Gazing at the metal doors I announced that the doctor was crazy. “He doesn’t know what he’s talking about……that would NEVER happen.”

Now calm, my husband responded with confidence, “I am sure that is what will happen…..I am going to lose my finger.” We continued to disagree with each other as if we were talking about how the ending of a movie would turn out.  The seriousness of what we had just learned flew out the window for the rest of the night, although our discussion about it did not.

There was no way that they would just cut his finger off. 

The ridiculous notion abolished all my fears of a cancer diagnosis. Still my mind couldn’t refuse to ponder the possibilities of ‘what if’. We were living in the 21^st century. You just don’t get your body parts cut off. These thoughts replayed themselves over and over again in my mind. Even if it were cancer, there would be a way to repair the bone. Simple math, A + B = C. My brain, hard at work, had resolved the problems dancing around in my head. The skills of the right doctor could piece my husband back together again. After all, 15 years earlier I had been injured in a ski accident and my blown out knee didn’t leave me without a leg. It was repaired with materials that came from other areas of my body. My surgeon informed me that the body has spare parts, and most any break or complication could be repaired. Dan’s hand would just need reorganization of materials. If there was a will, there was a way. My denial began to set in. The remainder of the night was spent playing with our children.  I would not allow myself to be consumed by tumors and chopped fingers.

Before the biopsy we had lots of time to wait, think and talk.  From there on out we spent every appointment together as a team.  My husband seemed nervous. His cast had been off for two days and he had already begun coddling his damaged hand. The hospital gown made him resemble an old man, as he had undoubtedly lost weight in the last month. We nervously joked back and forth while we waited, only engaging in small talk as if we were on an uncomfortable first date. Soon the surgery was underway and I was left alone. The waiting seemed to go on for such a long time. I memorized the hideous pattern on the wall and the counted the stains on the ceiling. Hospitals are so gross in addition to being extremely depressing.

(Dan, shortly after his tumor biopsy)

His doctor came in and told me my husband would be awake in an hour and ready for me to take him home.  He told me very little after that, except that testing would be done in a lab and the results would not return until Friday. We would have to wait. Two days shouldn’t seem like a long time, but when your life depends on it, two days seems like eternity.  I had never seen my husband in a hospital before, or in any kind of real pain for that matter. The tables were about to be turned from the year he had just watched me go through pregnancy. For my body, pregnancy was its own form of cancer. Throwing up for a full 10 months, an 80 pound weight gain per kid, and a 10 pound tumor (the baby) of my own torn out from inside of my body left me emotionally worn and physically changed forever. Women are strong. They have babies every day with little sympathy and consideration from their husbands as to what it must really be like. My husband in particular, couldn’t fathom how hard it was for me to reclaim my body and identity, and I felt very abandoned by my partner in my time of need.

He should not have gone back to work the next day, but was desperate to be ‘normal’. He lied to his co-workers about what was really going on. I hid out at home with the kids, telling no one but select family members what we were experiencing.  

We were almost embarrassed, as if we would soon be told that we had a nasty case of cooties. No one likes the kid who had cooties.

No, we would keep it a secret for now.

Appearances are everything to those who can’t accept that they are imperfect. 

 As long as we kept those appearances up everything would be okay.

Surviving Cancer: My Story, Part 3: Cancer is an ugly word and nobody likes saying it

Part 3:  Cancer is an ugly word and nobody likes saying it 

My husband came through the door with a well constructed cast on his right hand, and wrist. “30 days!”, is all he said. 30 days to having a fully functional husband again. “That was a really quick doctor’s visit" I said somewhat puzzled.  "What did he say about how you broke it?” I asked inquisitively.  He had only seen the doctor for about 2 minutes total. “He came in and asked me how I broke it, glanced at the X-ray briefly and then ordered a cast for 30 days. He didn't even looking directly at me, or my hand, and then left me with the nurse to wrap it up, he seemed in a hurry", he explained, as if it were normal procedure.

"That seems odd", I thought.  I was forced to dismiss the nagging questions I had.  I wasn't a doctor, and if they weren’t concerned, why should I be?  Yet I was experiencing the same uneasiness in the pit stomach as I had before–a force that had led me most of my life– telling me that I should not dismiss the nature of this break.  

This time I did not listen.

I wanted to relish in our new baby, and new beginning for our family, instead of being borderline mommy figure nagging my husband to get to the bottom of something so minor.  A broken bone?  So what.  Everyone gets a broken bone in their lifetime.

There were warning signs that we didn’t recognize. The following 30 days consisted of a lot of complaints from Dan. His hand was sore and he was tired a lot.  I remember rolling my eyes when he would attribute needing to nap almost every other day to his broken hand, while I was living on new mommy fumes, never getting the rest I needed at night, let alone a nap every day. But I went along with it anyway, sometimes joining in on the nap, or just taking down time with our boys. His coloring had changed quite a bit which my subconscious dismissed to the lack of sun we were seeing because it was wintertime.  His skin had taken on a subtle greenish hue, recognizable in the family pictures we had taken later that month.

We continued on with every day life for the next 30 days.  Our baby would be getting blessed at church, and our extended families would be in town.  We were happy to be spending time together, and life went on like normal. The time came and went quickly. On his way to the 30 day appointment Dan was relieved to have the annoyance removed from his hand. The cast was finally coming off. That morning I had kissed him good-bye and went about the daily tasks of laundry, and planning out the day. Several hours later he returned. Immediately an alarm went off in my head when I saw his face as he walked in from the garage. Concern, disappointment, anxiety, and fear consumed him as he entered the room, and hastily walked passed me down the narrow hall to the bathroom. “What’s wrong,” I asked, immediately following him.

He hadn’t stopped walking until he reached the bathroom, and silently locked himself inside. I heard sobs. At the base of the door his shadow confirmed he was sitting on the floor.  My heart sank, and my knees buckled.  I found myself sitting next to the door that was now between us.  I was confused. Ten minutes of silence passed before I knew he had stopped crying. He knew I was there but hadn’t said anything. I finally got up the courage to ask him to open the door. “No!”,  he said. “Please……let me in. Tell me what’s wrong. What happened,” I replied as softly as I could trying to convince him to open the door. “You don’t understand.”

I finally convinced him to open the door. He sat there with his head in his hands sitting as he crouched on his knees. I moved inside the door and positioned myself right next to him. I had no idea what was going on. Something had happened and it was obviously serious.“Did something happened at the doctor’s office?” He only replied with the word yes.“Well what was it? I can’t know how to help you if you don’t tell me.” I tried to reassure him that whatever it was couldn’t be that bad. “There is something wrong with me”, he finally blurted, “and there’s something wrong with my hand.” He finally looked me in the eyes. Thoughts were exchanged between us, but no words were spoken. My mind raced over what he could be talking about. Maybe the bone healed wrong and he would need surgery, I thought.

“I don’t know what it is”, he tried to explain, “All I know is it’s bad.” I had never seen him react like this before. I was used to seeing a lot of emotion from him, but never as scared as he seemed to be then. He seemed broken, and genuinely scared.  Even though I was trying to counter-balance his fear and uncertainties by staying positive, I attribute my lack of real worry to being somewhat naïve.

He told me the details of the visit. Upon arriving at the doctor’s office they took off the cast and did a routine follow-up x-ray. The nurse left him in the waiting room for the doctor to come in and give the thumbs up confirming that the bone had completely healed.  He sat in the patient room for a considerable amount of time before anyone came back.  It wasn’t the doctor. The nurse had come in to get some supplies from the drawers. “So how did the X Ray look?” He said breaking the silence…..in an almost joking manner with a grin on his face. “Am I all better?” She averted her eyes from his direction and answered, “Well it looks like it hurt pretty bad….the doctor will be in soon to talk to you about it.”  She seemed eager to leave the room without anymore discussion.

My husband, now nervous, was anxious for the doctor to return. With the new x-ray in hand the doctor opened the door with the news that an MRI was needed, and possibly some further testing on his hand and the break. There was some discussion, and then my husband questioned ‘why’.  He recounted how the doctor seemed more nervous than even he was,  as he used medical textbook explanations. Dan finally told the doctor he didn’t understand what he was trying to say.  Sighing, the doctor finally stood up, and switched on the light to the x-ray box where he plunked the image from his hand against its light.  He pointed at the spot of interest–the bone that was once broken.

“Ok, you see this?” he began, pointing at the image, “this is where your broken bone was.” Dan was staring at what looked like the remnants of a bone that had been chomped off in the middle by a dinosaur. The bone was almost gone, dissolved, with only fragments left on either side. “Ok", he replied, sounding as if he were trying to follow where this story was going. “Something has happened to this bone in the last 30 days.  It’s gone".  Dan sat stunned. There was very little he could think of to say.  Being a professional at avoiding problems he wanted to pretend like he hadn’t heard what was being said, and that it wasn’t real. “What do you mean the bone is gone?” he asked. The doctor was evasive at best, not giving any information away. Dan was not an ideal communicator, and had no other choice to follow the doctor’s orders to make an appointment for the following day. He got in his car, and came straight home.

“What if it’s cancer?" came out of his mouth, still staring at the bathroom floor. “What??? It’s NOT cancer!” I instantly replied. Barely in my 30’s I’d only personally known older people to get cancer, or serious diseases, and just a few cases at that. Surely my young husband in his prime of health didn’t have cancer. “You don’t get cancer that way, not from a broken hand.” The foreboding feelings I had dismissed only 30 days prior crept back into my mind, and gave me a sick feeling in the pit of my stomach. Why didn’t I listen? I planned to go with him the next day to the doctor visit knowing it was the only way to get real answers concerning this situation.  There was no use borrowing problems at this point. We would soon find out what was really going on.

He seemed to let what I was saying calm him. The doctor didn’t say the words cancer, tumor, or disease. But my husband still knew by the look on his face, the urgency of these tests and appointments. Whatever was going on with his hand was very serious.

Surviving Cancer: My Story, Part 2: I think I just broke my hand

Part 2:  I think I just broke my hand

 Dan had just started back to work after taking a few weeks off to help with the new arrival of our new baby. He was tired, I was tired, but there was nothing suspicious about the level of fatigue in our house.  We were excited about the baby and enjoying the newness of it all while getting to know his little personality and establishing routines. Someone once told me that the birth of a baby brings many blessings into a home and family and I was certainly feeling them. We were eager to share him with everyone so we drove over to my parents house who lived about an hour away.  

It was winter and there was snow everywhere.  Sprout 1 helped grandpa shovel the walk while grandma bathed the baby.  It was relaxing and we found it difficult to pack up and leave and make the long journey home.  There was a strange calm before the storm.

We arrived  home late that evening and began unloading a car full of bags, toys, kids and groceries.  I took charge of the kids and started to get them settled while D brought in the last of the groceries. 

 Suddenly, I heard the door slam shut as he cursed in pain. “I think I just broke my hand!”  Nobody breaks their hand opening a door, I thought. “Well, what happened? I’m sure it’s not broken–it can’t be,” I said trying to reassure a man who had never had a cavity let alone a broken bone.  He obviously had no measure of pain and his tolerance was low.  

In his rush to get the car unloaded, he slipped the weight of the grocery bags down to his two bottom right fingers so he could turn the door handle.  He then pushed the door open without having to set anything down on the ground.  I was sure it was a pulled muscle at best, but he insisted that he felt a pinch and a small snap around his ring finger.  My sympathy was meager after a resume of two knee surgeries, a tonsillectomy and most recently, a painful stitch job after a cesarean. I didn’t trust his judgement and I had so many things to deal with let alone a sore hand that could be managed with some time and Advil. 

“I’m sure it will feel better in the morning. Sometimes a pulled muscle can feel as painful as a broken bone.” I was tired and urged him to get some rest for work the next day.

Things between us had started to seem better since the arrival of the new baby.  I began to feel closer to him.  The previous few years had been rough on our marriage and left a distance between us, contention in our home, and a void of the happiness we felt in the beginning.  Yet, we had always worked out our problems big or small and were determined to honor our commitments to each other and our children.  I grew up in a broken home and knew that I never wanted that for me or my family. I had a deep love for him and as his wife, my basic existence was completely dedicated to making sure he was happy and that his life was the success I know he wanted.

Three days passed and his hand was still very sore and painful so we decided it was time to see someone.  Our family doctor took an x-ray and confirmed the news that he had indeed broken his hand.  He called me as he walked out of the office to say, “I told you so!”  I was a little stunned.  Ok, a lot stunned.  Red flags were raised. How in the world could a bone be so fragile in such a healthy person?  I felt bad.  I had minimized the severity of the situation a few days earlier and my judgement was off.  

He returned home that evening with a copy of the x-ray and a referral to an orthopedic surgeon.  He was told that breaks in the hand sometimes require surgery and need to be properly set to heal and so we made the appointment for the next day.  Stunned and exhausted, I resolved deal with the inconvenience of a broken hand and possible surgery, in addition to the baby, but nothing would prepare me for the forthcoming news.

Surviving Cancer: My Story, Part 1: New Baby

Part 1:  New Baby

I had just had my second child, another little boy.  He was sweet, and quiet, and brought love back into our home, where stress and contention had become the norm between my husband and I.  My pregnancies were hard, and unforgiving.  I was still trying to recover from a nasty stitch job from my C-section, and a ten pound preemie.  I slept as much as possible, and tried not to disrupt my stitches in an effort to heal quickly.  A lot of that first month was a blur to me…but I do remember certain unsettling events leading up to our cancer diagnosis that were ominous, to say the least.

 

One stands out more than any other, The Trolley Square Shooting.  A teenage boy walked into an upscale mall and shot 11 random people, resulting in 5 deaths before he was shot and killed by an undercover police officer dining in a nearby restaurant.  The event remains vivid in my memory because I was there, in the midst, and middle of it all, the very store that he killed 5 people.  I remember him walking into the store, seeing his long black trench coat, holding guns in each hand. I was scared to death, frozen from the surreal nature of what I was forced to watch. I eventually began running toward the back door to a dark parking lot where my husband and two babies were waiting for me to pick up toddler bed parts at Pottery Barn Kids.  I always seemed to be in the wrong places at the wrong time, yet somehow managed to escape.  It was a combination of spiritual protection and inner drive to survive that minimized my risk, and potential crisis.

We started our outing with a plan for my husband and the kids to window shop the adjacent stores while I was running my errand.  As we approached the mall I had a nagging feeling in my gut that we should just go home and forget about the errands. I was tired, and in pain.  Despite the promptings, I decided it was best that my family wait in the car while I quickly ran in, cutting our family shop time out. My husband was annoyed, and tried to convince me that we should all go on in. I couldn't shake my uneasy feeling about him going in, so I leaped out of the car and ran toward my destined store before any more discussion could take place about it.

“Hi, I’m just here to pick up the bed parts that were ordered for a toddler bed.  I got a message saying they arrived,” I told a woman at the register.

“Yes, it looks like they are here in the back, let me go get them for you”, she said.

I waited at the counter, thumbing through their new catalog.  The store was full with lots of little kids discovering the kitchen play sets, and books.  Suddenly, without warning, there was a large crashing noise.....BOOM!  Everyone in the store paused briefly.  I exchanged glances with a lady standing at the register to the side of me.

“That was loud!” another customer said as she walked past us following her child to the book section at the front of the store.

The echo of the noise made it seem louder than normal, almost if a large window display was being hung outside the store, and had been carelessly dropped.  Everyone went back to shopping, dismissing the crash.  Less than a minute later the cannon like noise came again, followed by another, and another in a constant stream.  This time, everyone paused and all eyes began scanning the room in a panic.  Although it was one swift moment, it will be forever ingrained in my mind in slow motion. Everyone shifted their attention to the back storage room. Then there was running.  A woman pushing her green stroller with one hand, was dragging her young daughter in the other, and crying as she moved as fast as she could to get away from the commotion.  Right behind her was the source of the noise.  A tall, thin man in a black trench coat began shooting a large barrel shot-gun directly at the running crowd, children, as well as adults.  I stood paralyzed at the register watching the scene unfold, the voice in my head repeatedly telling me to “RUN!”  I saw people running in the opposite direction of the shooter as he fired one shot after another.  I had to get out.  I finally snapped back into reality, engaged, and dropped all the items in my hand as I instinctively ran to the back door leading out of the shopping center.  I was afraid of being shot in the back, but I took the chance anyway. I got to the door and tried to push it open but it was jammed. I started to cry.  I remember a calm feeling had come over me for a brief second, and a soft voice say, “pull”.  Screams and shots continued to pound less than 100 yards away.  I pulled the door open and was free. 

I ran to find my husband, but the parking lot was dark and I couldn’t see our car.   Fear and chaos lingered in the air.  He had been circling the parking lot keeping the kids entertained and pulled over when he saw me.  I ran to the car and opened the door.  I got in and shouted, “GO!  Get us out of here.”

I was in obvious shock and unable to immediately recount the details of what happened.  Fearing for the remaining customers, I called the store and was told they were all hiding behind a locked door in the office.  Several people had been shot and the shooter was still in the mall.  It was confirmation that what I had just experienced was real. I instantly remembered the promptings I had earlier. Had I not listened, my little family would have been in the direct path of the gunfire, and would surely have been harmed. The news coverage of this event went on for weeks, and the trauma remained in my nerves for a long time after.  As horrific as it was, I could never have imagined that something even more traumatic in my life was right around the corner.

FoUrTh aT tHe LakE, RoDeO tHe NiGhT

ronica came in town to holiday,

 we love to lake on the fourth.

not all the sibs could

come home, but 2 on the lake is 

still reason enough to go.

 

dad and the girls

 

my baby sister

is beautiful

sunbath

play-time

love the lake,

still miss flathead

summers

our montana roots

love the rodeo.

 dal,ronica, me, & mom.

 

still our

parents kids,

almost the same

as years growing up.

'FiX mY pToSiS' tAkE 2

eye surgery #1 did not work.

eye surgery #2 (today) hopefully will.

 

it was harder to have the second surgery 

than it was the first.

e's eye bled for a long time

in recovery.

i hadn't eaten all day

since my baby couldn't eat

anything.  

his surgery was at 1:00,

no food all day + my baby bleeding from his eye

while crying waking up from the

anesthesia = momma almost fainted.

 he did so well,

my baby was so brave.

a get well card from

our favorite 

super hero will

cheer him up

later.

WorD tO yOuR mOm...

when the sprouts

start to put out a little 

too much sas...

it's time to 

dish it out

right back in 

return.

word to your mom...