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.