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.