Tag Archive: Tumor


On an early weekend morning, I rolled over to the edge of the bed and realized I couldn’t get up. (At least initially I couldn’t get up.) “F●●●,” my body groaned. I reached for my cane, pulled myself upright, steadied on the bed’s edge.” I am getting old. Quickly. There’s a sobering likelihood that I will be one of the seven 65-year-olds who will be disabled before death. I’m not looking forward to it, but I find myself continually negotiating with ‘Father Time’ for a snippet’s reprieve.

Nora Ephron wrote, “What I believe … is that at a certain point in life, whether or not you’ve been diagnosed with an illness, you enter into a conscious, ongoing … negotiation between the two … This negotiation often includes decisions as trivial as whether to eat the second piece of pie as important as whether to have medical treatment that may or may not prolong your life.” I’m at a point where second helpings are intolerable. I know it. My body knows it. Call it intuition. Call it the ‘sixth sense.’ Call it, ‘Joe.’ Call it whimsical. Doesn’t matter. Most dying can name the time, and date life shifted.

July 15th, my body shifted. My back, stomach, intestines, and right hip awoke pissed off, as if to say, “We’re in charge, Obiwan. And we decided to drive off that cliff in the near horizon.” My former sister-in-law described a similar feeling. She awoke one morning, feeling something wasn’t right. “It was an ominous feeling,’ she casually noted during an afternoon lunch. A little over a year later, cancer claimed her life. Therefore, any notion that “70 is the new 50” never occurred to me, as I never expected to get to 70. My physician will test whether ‘60’ is my never ‘70.’

Several tests, including complete blood count and tumor marker, have been ordered. I won’t stumble into the results. I won’t get to read it online before hearing from my doctor. Post-results, I will hit ‘pause’ to wait and see what happens. I’ll internalize everything until I know just how true this ‘intuition’ (my decline) turns out, for I do not want to claim to be a victim. 

I never thought that anyone would be sorting through my life history 30 years ago. And at this point, there’s no optional editing that can be performed. History is written. I know how the scales of justice both God and man weigh each detail on trial. Afterward, everyone alive will understand I was no victim. It’s unavoidable. Accept it and move on. 

Moving forward is an interesting concept. Buddhists believe most illnesses are primarily karma’s negative energy-consuming the sufferer. If so, I have acquired a s●●●load of it. Such karma stems from greed, anger, and stupidity, including eating pizza, beer, and onion rings. I suppose a lot of cancer is avoidable. Not smoking reduces lung cancer significantly. Avoiding red meat reduces other forms of cancer. Protection from sun exposure reduces skin cancer. For me, cancer is … cancer. Just is. It’s part of life (at least mine anyway). I will take this situation like others and make it part of the path. The path is exclusive. It’s not filled with only right situations, but any situation. Fortunately, I have time to prepare. 

When told of the odds of my survival (a couple of good years), I instructed my physicians I was not interested in hearing about weird drug trials, new medications, or life-saving operations. What good would it do me? I decided to live until death. I refuse to get waylaid by the kind of emotional baggage that frequently accompanies others. Life is short. Admit your wrongs, make amends when you can, and live until death.

After learning being diagnosed with “high-functioning” autism, writer Helen Hoang never told her mother. “I hadn’t really known how to tell her. More than that, I’d feared her reaction, so I’d simply avoided the topic around her altogether.” When I was diagnosed with a tumor last year and Parkinson’s this year, only five knew of my tumor, and only three (my doctor, my case manager, and a friend) knew of the Parkinson’s. Only three knew both, those being my doctor, my case manager, and a friend. Avoidance will either be my enemy or friend.

My doctor has routinely asked why I haven’t told any relatives. Chagdud Tulku Rinpoche said, “Death and dying is a subject that evokes such deep and disturbing emotions that we usually try to live in denial of death.” My brother is not particularly adept at dealing with it. And to be fair, most of us aren’t. Dealing with a terminal illness is hard enough without family instructing me to suck it up, swallow some Vitamin C, or work it out. Such a pronouncement would change every interaction; none of them are genuine. When I told my brother about the tumor, he was driving on the highway after flying lessons. Rather than waiting for a more suitable time, he listened to my diagnosis, demanded a second and third opinion, complete several other medical tests, and get back to him. He never called again, even when the date of the surgery came and went. The process of hiding or masking fits better in America’s society.

My military call-sign was ‘Chameleon,’ meaning I could almost on cue, adapt to any situation. I’m very good at it. I learned to blend as a kid because I saw people treated me, ‘different,’ ‘not socially adept,’ etc. Underneath that easygoing facade, was a soul struggling and found the minutiae of social interaction draining. The military changed that and trained me to adapt. It’s an acquired skill I continue to leverage and flawlessly execute.

I’ll admit, for months, I have considered coming clean. I almost came clean to my boss at work about the Parkinson’s diagnosis, but I know its impact on my career, for he was the second person informed of the tumor. Beyond that, I don’t want to have my illness define me, turning every conversation into a series of “how are you?” and every email into “here’s the latest cure you must investigate.” Nor do I want someone telling me to suck it up. Such conversations would provide neither meaning nor purpose. I aim to find out what the truth is for me and to live without vulnerability.

Vulnerability mustn’t be turned against me. It’s bad enough to battle a tumor Parkinson’s at the same time. I am unsure if I can fend off youth’s naysayers, demanding I fit into their mold. I don’t want to be the guy who seeks every nuanced therapy that provides marginal to no benefit. I want to live but live under my control, not under another’s umbrella.

Before the end of the year, I will tell my family. In subsequent days, conversations will become harder, and silences will grow. Relatives living in Chicago, Wisconsin, Florida, and elsewhere will email and either express regret or outrage at being uninformed. The ultimate question for every conversation will be, “Why?” And, it’s a fair question.

I have read many blogs where readers posed such philosophical questions of determining the proper moment to inform others of their terminal illness. Blogger Molly Kochan stated, “I have chosen to navigate this journey privately, with a handful of supportive friends and family. It was important to me to not be seen as a “patient” or as cancer.” I do wonder if my selfishness would impact others to such a degree that those affected would never move on. And so I say, “Yes. Eventually, they would find it within themselves to move on.” Therefore, I hope everyone focuses not on my final days (or year(s)), but rather upon leading the kind of life that will impact others. And should that be the result, then I would be truly inspired.

No one has an incurable disease until someone tells you they have it. You may have symptoms for weeks, months, or years, but until a doctor sits down with you, looks squarely in the eyes, and says it, you just don’t know about it. Of course all your symptoms could be something else. They could be nothing. Symptoms could be major, could be minor, laughable, painful; all of the above or none of the above.

As mentioned before, I went to the neurologist earlier this year expecting to be expected to be laughed out of the office, similar to years before. However, in a twist of fate, the doctor looked me squarely in the eyes and said, “You have Parkinson’s.”

I never fully processed my initial meeting, never got the chance. No sooner had I received my prognosis, COVID arrived and all hell broke loose – twelve hour a day shifts, bad food, and political leaders refusing to provide any semblance of what they were hired to do, like leadership for one.

There’s always hope that the last neurologist made a mistake and my current neurologist would say. “our bad. Sorry. you are just fine. Go forth and propagate.”  In reality, how many of us really have such luck, as we all die from something. Yet somewhere inside me, there was a little speck of hope that somehow, all this, the Parkinson’s, the tumor, and poor prognosis would be explained away by a bad burrito eaten several years prior. 

No such luck. Within minutes of my telehealth appointment, my neurologist confirmed my plight. 

We had your scans and physical assessment reviewed by another neurologist. And that neurologist confirmed your diagnosis. You have Parkinson’s.”

There was no mention of being years late. There was no, “Sorry dude for being tardy.” None of that. After usual conversation of current symptoms, medicine schedule, and symptom management, we ended on prognosis.

“Basically, we think you will get anywhere from 1 to 3 good years. This will be our ‘golden period.’” 

“Golden Period?’” I thought. Since this has been raging undiagnosed for years, how much of my ‘golden period’ was swallowed by bad burritos? Ah. Maybe I should be grateful. I have more  time remaining than others. Many people experienced diseases which have taken them quickly and way too soon.

I used to have no identifiable issues. And, all the symptoms I do have, l used to be able to successfully mask. That’s no longer the case. Tremors, stiff muscles, and dropping things are common. Nightly hours of insomnia are taxing and l am unsure just how long I can physically work. Lastly, Lord only knows if my tumor has grown or not, for a surgical, post-op follow-up was washed away during COVID’s tsunami.

The ‘golden year(s)?’ What the hell is that? Last March, I was told I would have a couple of good years left. My neurologist is saying if the tumor, or remnants thereof, doesn’t wipe me out by two years, maybe I will get an additional year or two … or … maybe not.

Sigh. Experiences from just a year ago seem so far away. No matter. I remain exhausted and wish for nothing more than one pain-free day.

Humor

I’ve read that fear of cancer returning represents one of the most common concerns. This fear can last years. I have no such illusions and presume the consequences of my lime will return – just a matter of when. I wonder how I survived until sixty.

I have a funnier fear. Back in 1996, a car dealer general manager in Minneapolis said he was going shove a golf club up my ass. And that’s my fear – that in fact – he snuck into my home last weekend, took my prized Calloway nine iron, shoved it up my ass right up to my neck, and left. “Damn,” I said to a friend. “Someone has to clean that club for the upcoming best shot tourney.”

My doctor stated not to bend over. No worries. My neck is so stiff I can barely bend over. And therein lies my greatest fear: I can sit on a toilet and be unable to raise my underwear. Yeah. Yeah. I know. Some people fear about cancer’s return, I worry about wiping my behind.

A friend inquired, via text, about the latest?

“I am still old, bald, and fat.”

“Yeah. Knew that already. Anything I can do for you?”

“Yes,” I replied. “I drop my cane and can’t bend over, and I text you. Will you come and pick it up for me?”

“What if you drop your phone?”

“F•••.”

I hope I am humorous until the end. I do not fear death. I fear not being able to laugh. For instance, if I have to die in 2020, I hope it’s just before the election, “Tell Trump I’m not voting for him.” Or may something like, “Hey? Anyone want to see a dead body?” Being a computer forensic geek, I could claim, “S•••. Forgot the browser history.

You know, maybe it’s crucial to be like Tig Notaro. In 2014, on Late Night With Conan O’Brien, Ms. Notaro commented:

“Before I had a double mastectomy, I was already pretty flat-chested, and I made so many jokes over the years about how small my chest was that I started to think that maybe my boobs overheard me…and were just like, ‘You know what: We’re sick of this. Let’s kill her.’”

In 2012, I wrote that by shining light on a dark road to guide others also lightens yours. The very nature of which is both Christian and Buddhist. Yeah, some days suck, but some do not. Like everyone else, I get up and continue forward. Ultimately, when I’m at my lowest, God becomes His greatest.

When a coworker asked how I dealt with the pain, I quoted a Buddhist I had read.

Well, I simply reflect upon the moment and remember I am not having a bad day. My body is, but I am not.

Yes, I have ups and downs. Moments of pain get intermixed with moments of relief. I forgive and continue on. By injecting humor, and using humor as an essential support tool, I’ve found pain lessens. Sure making fun can ruffle feathers, but for those like me, it’s about survival. Humor can be dark. But it can be fun. And it can be healing.

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