False Hope

False hope. Hope – faith, trust, believing, expectation. False hope, there was so much of it along the way. In the beginning, at the very start of this ugly diagnosis…my dad had a colonoscopy. He was 58. Sure, he was supposed to start his preventative screening earlier than this. But no doctor had pushed for it, and he wasn’t one to volunteer for medical tests. He went in thinking it was a routine test. And when he awoke he quickly discovered the test could not be completed. There was a tumor so large it blocked the way and the study could not be done. The doctor said it didn’t look good. A doctor he would never see again. The nurse assured him colon cancer was easily treated and he had nothing to worry about. Perhaps if they had discovered it early, perhaps stage I or II cancer this might be the case. But this large tumor had already spewed its malignant reaches into dad’s lymphatic system, washing his lungs and liver with poisonous cells. The false hope started with a nurse speaking out of turn. Probably in attempt to reassure, but dad only clung to the fact that he would be fine.

And it continued, the false hope. With the oncology team. People are living so long now with stage IV colon cancer. Five, even ten years. There are so many things to try. Never mind the five year survival rate of stage IV colon cancer still hovers around ten percent. Even though 90 percent of people in his shoes would be dead before the end of five years, maybe my dad will have ten. Maybe he will be the one. Nevermind he had a particularly aggressive form of cancer where the tumor had a specific gene that made it notoriously more difficult to treat and more resistant to the standard chemotherapy. There is still so much that might work. One day, you might beat this. Just a little more poison in your veins. Just a little more nausea, vomiting, incontinence, diarrhea, neuropathic pain, anorexia, exhaustion, just power through because you will be the one where this noxious cocktail might actually take hold of these cancerous cells and buy you time. Nevermind that time will be riddled with confusion and fatigue and your life won’t be a thing like it is right now. You should try this out, it might work.

And on to Johns Hopkins. When my mom first called the colorectal surgery office, the physician said there was nothing he could do. Imagine that. A surgeon who won’t cut. You’d think that would be enough to convey hopelessness. But they fought. They got into see the oncology team for a second opinion who somehow convinced the surgery team to take my dad’s case. Even though stage III colon cancer was usually the worst case they would operate on. And there it was. A beautiful glimmer of false hope. They lopped out a huge hunk of rectal tumor, of rectum, of colon. They hacked off 70 percent of his liver. They took so, so many lymph nodes they created a leak in his lymphatic system where fluid drained and drained into a plastic grenade my mom had to diligently empty every half an hour. Almost two weeks in the hospital. They hacked him up. And then they told him he was cancer free. Cancer free. Imagine that. A body riddled with cancer and now he was free. He endured radiation, extra, extra strength clinical trial level radiation, strong chemo, hours and hours of surgery. Pain and pain and pain. Rides in the car to Baltimore and back over and over and over again. MRIs and Ct scans and Pet scans, but all because there was hope. Hope that somehow he would come out ok. Hope that all this treatment would buy him some quality time. Time to tie up loose ends and to live and to love and to make things right.

But only a few months later, the scars still running deep. The bag on the side of his belly a constant source of irritation and embarrassment, the scans show the cancer is back. It was never gone. And his liver is worse, and now it’s filling his lungs. And the scar tissue on his liver is now stuck to his diaphragm and between the tumors and the scar tissue it was so hard to breathe. So back to Hopkins, to sew up the bag and hack up part of his lung to chase the tumors that are still spreading like wild fire and to zap his heart to kill a few crazy cells that are making the beats irregular and uncomfortable. But there is still so much to be done. Continue on with your chemo. You look great. All is well. I asked to the doctors to help dad with pain meds and with some Ativan to help him relax. No need, he doesn’t need Ativan. No morphine needed. Try some Tylenol and a muscle relaxer for the tumors that suffocated your organs. Surely, you are not dying. There is so much left to do.

Back to the chemo. Weight was dropping off. Not ten or twenty but over 100 pounds. And the confusion and the incontinence. Life was without dignity, and full of embarrassment and loss of pride and loss of self. Something formerly unacceptable is now just a way of life. And dad was so confused. He stopped eating. Clearly he was dying. He was slipping away. We asked the doctors. Of course he wasn’t dying. There was so much more we could try. They prescribed TPN. Artificial nutrition pumped through the port in his chest right into his veins. He will not eat. His body is shutting down. But we will make it take nourishment. There is so much left to try. Never mind the burden on my mom. The house that has turned into a mobile clinic. She has no emotional support. Anxiety is through the roof. There is no preparation for what is to happen next. No one know what happens next. She gingerly and eagerly and lovingly poured the viscous, sticky white honey thought his veins. To keep him alive. There is hope.

Dad is dying. He doesn’t know the day. He doesn’t know it is Christmas. We ask the doctors again. No, he’s not dying. There is so much more we can try. They stop the TPN. His body is railing back. His belly and lungs filling with fluid. He can’t continue the artificial nutrition. He is confused. He falls. We take him to the hospital. The oncologists come. They say maybe he has malignant meningitis. Maybe cancer in his spinal fluid explains the confusion. But, there is more left to try. We can try a spinal tap, do more scans and then radiation. Radiation on a body that is almost a corpse. How do you transport someone to radiation five times per week who is too confused to sit still? Dad is dying. But he still doesn’t know. There is so much more to try. The doctors from Johns Hopkins are long gone. They have retreated, given up. But neglected to speak up. Just faded into the background. There was nothing left, but they didn’t have the courage or decency to say. The appointments were canceled without even a goodbye.

Dad was dying before my eyes. Can we please just go home? With hospice and morphine and a hospital bed and help and support from nurses and a social worker and a chaplain. No, just home health would be fine. Dad is not dying. There is so much left to try.

They finally told dad he was dying. Two days before he died. They told him and he gave up. Went to sleep and never woke up. Maybe that’s why they waited. That false hope was keeping him going. That false hope helped allay the fear and anxiety that waited ahead. That false hope kept him from making amends and tying up loose ends. Was the false hope good? We all knew he was dying. But he didn’t know. He just knew to fight. To fight. To fight for all the things left to try and all the things that were to come. The false hope helped to bury the fear. I don’t know. Maybe the false hope helped soothe the deep wounds. But it also left so much unsaid and undone. It is hard. It is really hard to tell someone there is nothing left to try. There is no hope. To take away the belief the hard disease is beatable, curable. The mistake of the nurse trying to soothe, the misguided advice of the doctors trying to be humane. Trying to shine a light on a situation clouded in midnight. I don’t know maybe false hope is the answer. Maybe it is. Maybe it is.