Jay’s voice rose with tension. “So, you’re going to give up, huh?” My partner crossed his arms and glowered at the floor.

I could feel my jaw muscles bunch, teeth clenching. “Hospice isn’t giving up,” I said.

Jay shook his head. “You’re giving up.”

“You just don’t get it,” I said with a gusty sigh, patience evaporating. Wincing as a flash of pain cut through my right side, I turned and shuffled out of the room.

Why didn’t my partner understand? Why did being accused of giving up make me so angry? After nearly three years of brutal treatments for advanced breast cancer, my ravaged body couldn’t take it anymore. I had zero quality of life and faced incessant pain coupled with a dizzying spectrum of infirmities. If I continued this path the treatments would kill me, not the cancer. Hospice care was the most sensible action to me. However, my family bluntly opposed the idea.

Since being diagnosed I’d been subjected to seven different types of chemotherapy drugs, four surgeries, and a cumulative ten weeks of intense radiotherapy. I’d been hospitalized for an infected abscess, and at one point, required a blood transfusion after my body’s hemoglobin production was decimated by chemo. I was a crawling, vomiting, hairless wreck.

Despite these vigorous ministrations, the cancer had metastasized to some of my bones, right lung, lymph nodes, and soft tissues. Obviously, the treatments weren’t working. Bound by his profession’s staunch devotion to saving lives, the oncologist was unwilling to give me an expiration date. He wanted to administer yet another medicine. Like the doctor, my family also preferred to perpetuate life whatever the cost. Treatments gave them hope and the idea of hospice took it away.
Understandably, no one wanted to be associated with the cessation of my medical regimen, which was equivalent to quitting in their eyes. To quit was to give up. A common misconception is that hospice hastens a patient’s demise. Since they were not in my shoes, no one realized the extent of my misery. A decision had to be made between trying a harsh new drug or palliative care for pain. As the patient, the ultimate choice was in my hands.

Life and Death
Biting my lip, I stared at the yellow piece of paper requiring my signature. The letters D-N-R stared back. Do not resuscitate.

Hand weak and trembling from neuropathy, I signed on the dotted line. I felt a combination of relief and anxiety, glad I was proceeding with what I really wanted yet worried over loved ones’ anticipated reactions. More papers were signed. This was it. I would finally receive thorough palliative care while allowing nature to take its course. No more debilitating treatments.

Since I was ambulatory and self-sufficient enough to cook and bathe, I received in-home hospice care. Once a week a nurse would visit, and a chaplain and social worker would occasionally stop by to address emotional or spiritual concerns. Help was just a phone call away. Importantly, the awful tumor pain and associated symptoms were mitigated. I could finally relax and focus on making the most out of my remaining life.

Seeing the difference and finally accepting the facts, my family’s attitudes shifted. I was relieved when my partner admitted he’d been selfish. He naturally wished to keep me around as long as possible and had erroneously equated continued medical treatments with prolonged life, forgetting about my acute pain and physical deterioration. Anticipatory grief intensified as loved ones struggled to cope with the new course of care. In their eyes hope had been traded for uncertainty. The pressing question became: how much time did I have?

So Now What?
Spending more time with loved ones and engaging in meaningful talks helped resolve their fears. It irks me that this society tends to treat death as taboo and leaves people reluctant to discuss it, lest they say something they consider too shocking. Family members often avoid speaking to a patient in depth about the subject, afraid they’ll offend. Likewise, patients are often unwilling to share their innermost fears and concerns. As a result, valuable discourse is neglected, as is a chance to establish deeper bonds lost forever. Defying such useless and obsolete social norms, I resolved not to allow this to happen.

My lifespan an unknown factor, it is up to me to take advantage of the remaining moments, to secure loose ends and socialize. I refuse to cower in a corner and allow a disease to control my mood or activities. I’m in the pilot’s chair of my life, not cancer, and certainly not society’s ridiculous norms. Voicing the most colorful expletives an ex-boat mechanic could utter, I lifted a middle finger and sneered in cancer’s face. It may’ve taken my body, but never my spirit.

Facing Fear
People wonder how I can be so positive and defiant in the face of an incurable illness, so I sought a logical explanation. Honestly, I really don’t know. Is it because I don’t fear death? I am afraid of any pain that might accompany the dying process, but I harbor no trepidation of what happens afterward. This could be partly due to my ethnic background and upbringing.

Culture surely plays a role in how I view death and have overcome the natural human mistrust of the unknown. Through my native Siberian-Sami side, I was raised with the belief in a many-layered spirit realm and the presence of animal and angelic spirit helpers. We also have a strong incentive to behave since there are lower, rather hellish levels in the afterlife where misbehaving souls will land. Likewise, people who are good in life receive placement in higher levels. If we behave, we can take comfort in knowing a heavenly abode, beautiful beyond words, awaits us after passing. If a soul needs to continue the challenging lessons of earthly life so it can evolve into higher levels, reincarnation occurs.

Such an ideology also contributes to my open-minded view of the supernatural and presumably makes it easier for me to experience paranormal encounters. This was in spite of the fact that I am a stubbornly skeptical individual who doesn’t blindly believe everything I am told. I have to experience it first.

The unseen didn’t waste time trying to convince me. As a young adult, there were times during the wee hours of the morning when I’d wake up beyond my physical body. The real “me,” presumably my soul, was aware yet nonphysical, and able to pass through walls and fly in the air. Some may regard the experience as delusion, but that doesn’t explain the instances I’ve been able to describe. For example, once, while traveling out of body to a friend’s house, I witnessed a scene that I described the next day to my perplexed friend who affirmed that what I described had actually occurred. I had limited control over these occasional excursions, but they were unforgettable.

Spirits or ghosts were another phenomenon I’d sometimes encounter. Again, it would be easy to dismiss it as fantasy, but other people have validated what I’ve seen. In one instance, I had the compulsion to describe a ghostly gentleman to a woman at work. He’d appeared out of the blue and started hanging around her. My co-worker was receptive enough for me to risk sharing what I saw. After I described the ghost, she burst into tears and, showing me a photo of someone who resembled him, explained it was a recently-deceased uncle. I had no idea she’d lost a family member much less what he had looked like. This brought her closure and the ghostly uncle, who’d likely been trying to let his favorite niece know he was still OK, moved on.

Living with Purpose in Death’s Shadow
Bolstered by ingrained cultural beliefs and the occasional ghost, I’ve managed to make peace with death. After escaping a dysfunctional family many years ago, I had learned early on to live with purpose. After the cancer diagnosis, this meant spending as much quality time with loved ones as possible. Savoring the little things in life also mattered more: admiring a colorful sunset, trying a strange new food with my only sister, or secretly doing a kind deed and watching the resulting ripple of positivity. When I was still able to work, I focused on jobs I enjoyed. Trust me; you’re far more productive and successful when you like what you do.

This attitude carried over to hospice. Working around physical limitations, I have endeavored to keep busy. Recording thoughts and experiences in a journal has become an enjoyable activity. The book-like journal I’ve been keeping will be left behind for loved ones to read after I’m gone. This is something anyone can do. Not only is it therapeutic for the patient, but it’s a wonderful gift for grieving family and friends. Of course, I was sure to write things I didn’t mind loved ones reading. I also secretly wrote long letters to each close family member and friend, sharing fond memories of the individual and how important they are to me. These letters have been concealed so they’ll be found only after my passing. While initially they may provoke tears, in the long run the letters will be treasured keepsakes and a way to connect.

I realize that if I have something to say, it’s best to do it in person before it’s too late. The ideal is to leave this world with no regrets. We must endeavor to forgive and not take unresolved bitterness to the grave. I had the most difficult time learning to forgive my abusive, alcoholic father. The complicated process of absolving his cruelty took a long time. My dad hasn’t been in my life since young adulthood, but I was able to eventually resolve ill feelings without his presence. Tying up loose emotional ends is a must for a peaceful passing. One of the secrets to life, something many find elusive yet deep down know to be true, is kindness and unconditional love.

A hobby in visual arts is another way I pass the time and my finished works are donated, sometimes sold, to various places and individuals. One doesn’t have to be an artist to engage in creative work. From the easy task of enjoying a coloring book made for adults to experimenting with fabric paint, art can be a relaxing and mindful activity. For some reason my paintings have been exploring the subject matter of angels. Gee, I wonder why.

It’s OK to Laugh
Since I have a nutty sense of humor, I frequently lift a gloomy atmosphere by pranking friends and playing harmless jokes. People can’t focus on depressing thoughts when they’re too busy laughing. For some inexplicable reason, our societal norms dictate we must maintain a strictly formal and grim stance around the subject of death. As if laughter and positive attitudes are somehow impolite. That bizarre assumption can’t be further from the truth.

Ignoring society’s absurd norms, I’ve been guilty of using an electronic fart machine and wearing ridiculously crazy hats in the chemo ward. There was the “exotic pet” in a hat box that I pranked people with (it was my wig), as well as a rubber gecko and fake puppy poop. The more laughter my mischief brought, the more creative I became. Clowning around was much more fun than moping. Of course, it’s crucial to be sensitive and respectful to anyone who doesn’t wish to be bothered. Most people are OK with witnessing or being subjected to light-hearted jokes. People crave laughter but often need someone else to come along and break the ice.

Does being negative and depressingly serious all the time improve a situation? No. It won’t dispel one’s illness and just makes those around the miserable person unhappy as well. What’s the point of that? Of course, we have a right to express negative emotions along with the positive. A poor mood needs to be faced and understood, not suppressed. I may be unable to renew my body, but we humans always have the power to work through and heal emotional and mental issues.

Negativity only becomes problematic when it perpetually overrules everything else. Breaking out of a blue mood isn’t easy though. It takes effort and the first step is the most difficult but it’s not impossible. If depression or anger persists it’s imperative to reach out to others, in my case sharing with the hospice staff, a nurse, or confiding in friends and family. There are also online support groups for the computer savvy. I refuse to die unhappy.

What do Dying Patients Think?
Past chemotherapy treatments and current pain medicines have addled my cognition and short-term memory, but I’m still acutely aware of the situation. Many people wish to know what we terminal patients close to death are thinking, yet they’re afraid to ask. The answer depends on the individual and how much they’ve been able to prepare. Being terminal can be an exceptionally difficult situation. Some patients experience anxiety over the unknown and others fret over things they wished they’d done differently. Parents with young children despair over the prospect of leaving their family behind. I’ve met a few patients who were incredibly angry and unwilling to accept the turn their lives had taken. I don’t blame them.

Personally, I’m frustrated by the physical degradation, constant fatigue, and inability to do things I once took for granted. I frequently wonder when my tumor ridden body will finally give in. Not knowing is positively vexing. Will there be warning signs? Will I become immobilized and stuck in bed, being spoon fed mush and crapping in diapers? Horrified by the prospect of becoming totally dependent on others, I’d rather pass on before that occurred.

I also fear the possibility of acute pain when my body’s functions cease; a common concern. Yet I look forward to leaving my damaged form behind and flying to freedom in the spirit realm. I’ve had a good share of adventures in life and am satisfied by the actions I’d taken. I’m grateful for the memorable connections made with others over the years, and glad to have been able to forgive my father. Dangling ends have been tied, peace made with family and friends, and with death itself.

I am ready.

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