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.
