Friday: April 20, 2012

You might notice a large gap in the narrative. All I can offer are excuses.

 

I've sorely lacked the energy or words to commit anything to print. But I've begun to feel better. The flu-like funk is dissipating, but I still lack energy.

There are days even now when I do little more than sleep. A medical appointment or trip to the grocery store will cause me to slip into a sleep-filled fugue for several days.

My appetite is spotty. Mary Lou suggested I start drinking health shakes and smoothies again. I think she's right.

I've tried several times to write something in recent days, but quickly surrendered to my ennui. It's been too difficult. Words are elusive. I'm having cognition problems, the result of a mental fog known as "chemo brain."
 

I forget things that Mary Lou may have told me yesterday.

"Really?" I'll ask, incredulous. "You said that?"

 

She'll nod her head, her face a portrait of concern. I hope that, like this Godforsaken fatigue, it's temporary.

 

Some weeks ago, I mentioned that my brother-in-law's brother, Dick, had been diagnosed with an interstitial lung disease. After a biopsy several weeks ago,  his condition deteriorated to the point where he had to be flown from a hospital in Northwest Ohio to the ICU at Cleveland Clinic.

Doctors immediately put him on the list for a lung transplant. A week ago, they found him a lung. Yet before they could prep him for surgery, a blood clot formed and he died.

I did not know Dick well, but we had played golf together and found him to be a good guy. He fought hard to get a second chance and missed by a few hours. So unfair. He had just turned 60.

While the last month has been a much-needed period of recovery from the rigors of treatment, my respite won't last long. Next Thursday is the CAT scan that I hope will show I'm cancer free. On Friday, I will be fitted at the Clinic for the mask that I'll use for 15 sessions of prophylactic, whole brain radiation.

I've read just a bit about brain radiation and its side effects, which can be fairly severe. Here's a partial list: brain swelling, head aches, cognitive deficits, psychiatriac problems, nausea, vomiting and (yikes) fatigue.

I'm trying to fret about possibilities. There's nothing I can do but to tolerate and mitigate the side effects as best I can.
 
And I've not thought too much about the CAT scan. I don't have cancer. That's my story and I'm sticking to it.
 

I need to muster the strength to fight the most immediate threat – fear. I need to banish it as best I can. Living in fear is no life at all.
 

INTERLUDE: March 27, 2013

I've joined a gym. More specifically, I've joined the rec center, its front entrance just a half-mile from my back door.

Don't be impressed. I drive that half-mile. It's too far to walk in this cold, windy weather, especially when I'm soaked with hard-earned sweat.

I've joined the rec center, but I haven't pedaled out all the lazy yet.

My motivation for exercising? I don’t want to collapse and die of something. And it might help my golf game.

I recently finished a series of physical therapy sessions for a creaky, arthritic back. One of the therapists, who I suspect of having spent time in the Israeli army, basically told me I needed to get off my flabby ass and get some real exercise.

So, for once, I've taken some helpful advice. I'm trying to develop good habits.

Last night, I had a window of opportunity while the tater tots crisped in the oven (healthy foods, right?) to run (drive) to the gym for a quick workout. Given that my left knee is made of high-grade plastic and titanium, running and jumping is not an option, which leaves me pedaling and walking.

As is my habit, I first took a look in the large gym adjacent to the staircase that leads to the exercise machines and running track. Basketball gym rats can't help but look, wondering if there’s a game even when they can no longer play in them.

Women were jazzercising in one half of the gym; on the other half, divided by a large dropdown curtain, a group of boys dribbled basketballs around cones near one basket. At the other end of the gym, a small boy of 9 or 10 shot mid-range jump shots two-handed. Nearly every shot he launched whistled through the nets.

I decided to get involved and play a role shooters always appreciate -- rebounder. Shooters get more shots when they have someone chasing down their misses. But this kid, who seemed small for his age, did not miss much.

I tossed crisp bounce passes to his left and right, depending on the direction I sensed he wanted to move. With no real pattern, he moved around the arc above the free-throw line, shooting and scoring.

Basketball is an intuitive game, a blending of intentions and effort. A team in synch is a beautiful thing to watch. A squad working in concert can shred and embarrass opponents who are nothing but disparate parts playing as individuals.

I can still recall moments in various gyms where the harmonic forces between me and my teammates bloomed into the bright colors of cooperation.

Over that 10-minute rebounding session, I gave myself permission to take a half-dozen shots and missed them all. A few airmailed over the rim. I didn't care.

I can still shoot a basketball, but my role on this evening, in this space and time, was to pass. I took pride in doing that job well.

As for the kid, I hope his future is as bright and as sharp as his jumper. I appreciated him letting me into his world for a few minutes. I almost felt like a basketball player again.

I finally told him, “I'm done,” and headed upstairs to go one-on-one with an exercise bike. The kid wordlessly kept shooting, the presence of a random, tall bald guy no longer part of his consciousness. There were jumpers to drain and no time for old men.

Wednesday: April 4, 2012

The number that popped up on my cell phone did not surprise me. It was Dr. Ravi Verma, my oncologist. I knew why he was calling.
 Mary Lou had grown tired of watching her big, strapping husband reduced to a useless pile of goo and had contacted him.

Dr. Verma asked how I felt. I croaked a weak reply.

“Sick.”

It's been a week-and-half since my last chemo treatment and it appears that the post-apocalyptic effects of being deliberately poisoned have taken me to the bottom of a sickly sea. The previous two days had seen me falling deeper into an abyss of listlessness and ennui. I had never felt so sick.

Standing up left me dizzy and short of breath. I tried to write the other day but could not complete a single sentence.

Mary Lou and Dr. Verma had already arranged for an office visit. I was in no position to object.
I sat silently in the van as Mary Lou drove to the Kaiser facility in Parma. I had not been out of the house in more than a week.

At Dr. Verma's office, his head nurse sent me into the infusion center for an IV port and blood tests. The good doctor stopped by and quizzed me about my symptoms. My elevated heart rate and the tightness in my chest concerned him.

But I did take some assurance when he reported that it's not unusual for someone who has undergone simultaneous chemo and radiation to abide in this special corner of cancer hell.

A quick and long overdue note about Dr. Verma. I've never had a close relationship with a doctor before, which I guess is a good thing. He continues to impress.

The night of the blood clot incident, he came to the Cleveland Clinic (where he doesn't practice) to check on me and confer with the vascular surgeon. I've made some discrete inquiries. What he did that night was the norm.

“It's his life,” my source informs me. In journalism, some of us refer to the deeply committed as “true believers.” That's Ravi Verma, who takes vacations to his native India to treat the poor.

Dr. Verma sent me downstairs to the emergency room for more tests, including an EKG. To everyone's relief, they found nothing. My heart rate even dropped a bit.

Tests showed my blood counts are still far below normal. Dr. Verma came down and asked the ER docs to give me an injection of Neupogen, which stimulates production of white blood cells. It has nasty side effects, including intense bone and back pain, but if restores even a bit of energy, I don't care.

The ER docs wanted to hospitalize me. Dr. Verma intervened and said I should go home. (Quietly, he told Mary Lou and I that I shouldn't be needlessly exposed to all of the potential germs floating around hospitals these days.) Did I tell you how much I like Dr. Verma?

So home we went. I had a rough night, thanks to the Neupogen and prednisone, a steroid. But today (knock wood) I feel exponentially better. Completing a journal entry is ample evidence of that.

I could thank modern medicine, but my real gratitude goes to Mary Lou, who possesses a quiet certainty and the ability to take action when needed. Were it not for her, I'd still be on my vicious freefall.  I'm incredibly lucky to have her in my life.

Wednesday: March 28, 2012

For whatever reason, the angry clouds of post-chemo malaise parted slightly today and provide some badly needed sunshine. Six hours of solid sleep absent the unsettling dreams undoubtedly helped.

The irritation in my esophagus also has lessened, which made me think of food. Weak and short of breath, I huffed and puffed my way through the grocery to gather ingredients for chicken soup and lasagna, a family favorite at Chez Gillispie.

Mary Lou and I have made food an important part of family life. We have tried to sit at the dinner table as many evenings as possible for home-cooked meals with the kids. While Sam and Hanna's tastes are hardly adventurous, they're better eaters than I was as a child. My siblings, all older, loved to tease me about my picky eating habits.

Yet I became the amateur gourmand in adulthood. I also learned that some flare in the kitchen is not a bad way to get the girl.

I came to love cooking -- the research, the gathering of ingredients, the mise en place, the alchemy created by heat and fire. In the few years my mother was alive after Mary Lou and I married, it pleased Mom greatly to come to our house for dinner. I finally impressed her.
 

Mary Lou is the weekday cook. She plans her grocery runs carefully and has an admirable ability to turn out quick, healthy meals after work.

The kitchen is mostly mine on weekends and holidays. I've not been able to expand my repertoire as much as I'd like, but we'll soon be empty nesters, giving me a chance to experiment on Mary Lou.

It's been a blessing that I've been able to eat as well as I have during treatment. There have been  rough spots. This metallic taste caused by chemo is bothersome. But I've maintained my weight, which I'd been told was important.

  

It's nice to find something positive to write about. Cooking gave my spirits a small boost. I'm exhausted but happy.

I guess I made some real chicken soup for the soul today.

   

Tuesday: March 27, 2012

Despite my best hopes that I would emerge from my final round of chemo in relatively decent shape, the toxins have driven me deep underground.

Bone-weary fatigue overwhelms me. I get short of breath walking to the bathroom. I dragged myself upstairs yesterday afternoon for a shower and thought I might collapse along the way.
  

The problem, I'm guessing, is that chemo has sent my red and white blood cell crashing to unhealthy lows. Despite the fatigue, I've slept fitfully, plagued by strange dreams. Naps come sparingly. The hours pass slowly; my days are filled with interminable ennui.

 

I've not had the nausea that plagues some chemo patients, but the metallic taste in my mouth has made food unappetizing. Mary Lou now must urge me to eat.

My mantra has been, “This too shall pass.”

The doctors have only one chance to get it right. I will not put myself through this again.
 

Saturday: March 24, 2012

I walked out of the Moon Beam Chamber a semi-free man this morning after successfully completing 40 radiation treatments without  my molecular structure transported to a strange and frightening place. You know, somewhere like Detroit.

While I can't say I'm giddy, I am relieved. 

I think I mentioned previously there is a small ceremony the staff holds when a patient's treatment ends. It involves ringing a bell and reciting a poem. I made it clear to everyone there would be no bell ringing.

I'm a baseball coach from the old school, which means I strictly adhere to all of the game's time-honored traditions . One of those traditions is, regardless of whether you're losing by 20 runs or winning by 20 runs, you don't pack up the equipment until after the last out has been made.

If you're losing, it looks defeatist. Whenever you have outs left, you have life. And even if you're way ahead, you don't tempt the baseball gods, who lurk behind dugouts, eager to crush your double-knitted souls for any show of arrogance.

I've made it abundantly clear what I think of baseball and its meaning in my life. I think the same rules apply in regards to treatment. Take no chances.

  

So where do we go from here? Extending the analogy, I guess it's wherever I need to go to stay in the ball game.
  

I met yesterday afternoon with a psychiatric social worker at Kaiser. The nice way to describe how I've been feeling is "a bit down." The more accurate version is I feel like a badly whipped cur. The current condition of my life has me awfully depressed.
 

The social worker spent most of the 50-minute session getting to know me, asking questions and exploring what's left of my mind. She didn't have any real advice, other than to pull up links on her computer to a Kaiser web site where you can download recordings about guided imagery.

I'm skeptical guided imagery can help me. I'm flying blind.
 

I told her I wanted help on how to deal with so much uncertainty, she recommended that I live "one day at a time."
  

Out of politeness, I agreed to another visit in a week, but I'm not going back. A week is too far away. After all, I really am living one day at a time.

Friday: March 23, 2012

Forgive me, readers, for the gap in this narrative. I've not been able to write and am unsure I have much to say.

The last month has been far more difficult than I'd ever imagined. They told me the effects of treatment were “cumulative.” What they didn't explain was how that accumulation would become a crushing weight.

I've become enveloped by a shroud of fear and lethargy. As I told my friend, Paul: “I'm sick and tired of being sick and tired.”

I had two really bad weeks and one slightly better week after Round 3 of chemo. I should have been writing during the slightly better week but became distracted by family matters and personal struggles. The inkwell of my creative (and spiritual) soul seemed to have run dry.
  
I hate whining. When you step between the lines, you play your game, dammit. No one wants to hear your candy-ass excuses. Leave it out on the field or just stay the fuck at home.

Those sentences might have comedic value were it not for the ugly truth – my ugly truth – hiding in the cracks and crevices of the type that forms those words.

Okay. Let's take a cleansing breath. Find some positives.

Yesterday, God willing, was my last chemotherapy treatment. A good thing. Yet I find no sense of accomplishment in that, only mild relief that it's over.

And tomorrow is the last of the 40 radiation treatments to my chest. There is some hope that the end of radiation will shorten the chemo recovery time. That leaves me a month before I return to The Big Machine to have my brain zapped 15 times over a three-week period.

“Whole brain radiation” is now standard protocol for small-cell lung cancer. The brain is typically the next rest stop on lung cancer's highway to hell.

I have two scans next month that will show whether or not cancer has been kept at bay. I do not look forward to them. The foreboding possibilities, my personal sword of Damocles, keep me frightened.
 
Finally, the blood clot drama may not be over. I'll be undergoing stress tests in May at the Clinic to find out why my left foot and ankle still go numb, although preliminary tests show that blood flow in the leg is fine.

The vascular surgeon, Dr. Clair, suspects the problem might be a narrowing of the arteries somewhere higher in my body. If that's the case, he said, an angioplasty might be needed. I shouldn't be surprised given my history of smoking and high (bad) cholesterol count.
 I apologize that this post looks like a transcript of an 85-year-old invalid sharing his medical calamities, but that's what my life has become.

There is no pride to be found in my suffering. Only suffering.

I always intended for this journal to show smokers the ugliness of lung cancer treatment. There you go, smokers. Read it and weep.

Thursday: March 15, 2012

I'm having a better day. Really.

Like the thorough reporter I profess to be, I finally researched smoking and lung cancer to prepare for an interview later in the day with Dr. Toby Cosgrove, president and CEO of the Cleveland Clinic.

I knew he would be an ideal interview subject for the documentary. Dr. Cosgrove is an outspoken critic of this country's tobacco policy and politics. He banned smoking on the sprawling Clinic campus years ago and, using a carrot-and-stick policy with health insurance premiums, has essentially forbidden Clinic employees from smoking.

Dr. Cosgrove is a thoracic surgeon with more than 22,000 procedures to his credit. But he claims he has saved more lives with his anti-smoking efforts than he ever did in the operating room. The interview went well. The good doctor was engaging and direct and Lynn thought we'd gotten some good stuff.

But my research, unfortunately, meant I collected bad stuff – information that I didn't want to know. Among the detritus of scary shit, I found a footnoted reference that served as a bullet to the brain.
The footnote said that the survival rate at five years for a tumor in one lung that has spread to a nearby lymph node – that's me – is 14 percent.

The specificity overwhelmed me. Until then, I had gotten vague and conflicting answers about the likelihood I would live another five years. I'd been told by the oncologist, Dr. Verma, right off the bat it was 15 percent. But my doctors had been upbeat and seemed confident that I could and maybe would be an outlier. Dr. Greskovich seemed certain it was as high as 28 percent.

(As the kids say, LOL. Here I am, trying to take comfort as to whether I essentially have a 1 in 4 chance of living five years or 1 in 8. Okay. One in four does sound better.)

Thursday is my day to see Dr. Greskovich after radiation. I told him about the footnote and broke down in tears. My resolve is weakening. I feel like crap physically and mentally. Dr. Greskovich has only seen the strong, optimistic Mark, not the broken man sitting before him.

I told him that I had asked my general physician to provide a referral for psychiatric counseling. Dr. Greskovich thought it a good idea. Many cancer patients, he said,  need help.

He dismissed the 14 percent figure I had read. He insisted that the latest studies show the survival rate for my brand of cancer is 25-30 percent. He conceded there were no known studies to predict outcomes for someone with small cell and non-small cell lung cancer.

And he could not erase from memory the neat type that leaped off the page at me.

Dr, Greskovich emphasized that it's important to remain positive and active as possible. That's what I'm trying to do today.

With my energy levels up a bit, I decided to make a full day of it: lunch with McIntyre, a much-delayed visit with my father at the nursing home and a trip to the grocery store to gather ingredients for chicken paprikash, a dish I had never made before. If there was anything left in the tank, maybe a couple hours of poker at a friend's house.

I had not seen my father in awhile. The nursing home had been on lockdown because of a nasty intestinal virus that had infected many of the residents. I knew I should take any chances given how badly compromised my immune system is thanks to chemotherapy. But the siege had been lifted and I felt it safe to finally return.

It was to be an important visit because my father now knows I have cancer, something we originally vowed not to tell him. Age has significantly dulled Dad's mind. It's often hard for him to form sentences. Ask him what he ate for lunch 15 minutes earlier and it's likely he won't remember. But he has been observant enough to be confused and more than a little concerned about various changes in my life.

He wondered at first why I had been stopping by the nursing home at all hours of the day when I should have been at work. I told him I had been working from home.

My freshly shaved head threw him for a loop. I said it's easier to take care of.

Returning to church confounded him. I shrugged it off as "something I needed to do."

I told him partial truths, which I now realize are nothing more than gussied-up lies.

My sister Kay and I decided it was time to 'fess up, but that she would do the telling. I was afraid I could not control my emotions. I did not want him to see his baby boy an emotional wreck. I feared it would have broken his heart.

Kay said he didn't quite understand everything she told him. Kay also said I would be okay. And I will.

My visit with Dad went well. Knowing that he knows, I dismissed my cancer as a minor inconvenience (another lie) and said no more. I'm guessing he did not buy my story completely, but did not press for details.

I pushed him around the nursing home for awhile. We made a stop in the pool room, which was part of the original mansion onto which the nursing home was built.

Dad and his brother, Dana, were accomplished pool shots. Uncle Dana quit playing in early 90s when someone finally beat him at the senior citizens center.

I set up some easy shots that Dad could make from his wheelchair. I loved the intensity he brought to this small exercise, the care and concentration he applied to each shot.

I pushed him back to his room and told him I needed to get going. He gave me a long hug and told me how much fun he had. Our time together affirmed that, for both of us, there are no small moments. In these uncertain times, every second counts.

INTERLUDE: March 12, 2013

It's official. Today I turn 54 years old and am quite happy about it.

Compared to a year ago, I'm feeling like Lance on EPO, Barry on the Clear and Cream and Roger on HGH. I could throw myself a 90-mph slider and hit it into McCovey's Cove while riding a bicycle backward.

How much you wanna make a bet I could throw a football over them mountains?

It's a good feeling to wake up in the morning.

The evil Mr. Mike occasionally pitches a tent in the back yard of my psyche, providing a reminder of my mortality. But I'm guessing he does that to everyone once they reach age 50 or so.

Work sucks. The roof supports are collapsing on the coal mine called The Plain Dealer and I can't escape fast enough. I become more irrelevant with each passing day. But that's okay. They can't hurt me anymore.

I have spent some time mourning the loss of the only real profession I've known, but have reached the final stages of grief. I gave up Hatorade for Lent and will say no more.

“Lent?” you ask. Clearly Mark is going all metaphorical on us, right?

Nope. I'm fasting, not eating meat on Fridays, giving alms to the poor and attending Mass. Compromise is a constant in this life. Let's just say that me and Catholicism have reached a level of rapprochement.

I've returned on my own terms. There are things I believe and things I don't. It's not about the men in the pointy hats who are gathering in Rome as I type this to pick a new boss (same as the old boss). I will willfully ignore them when I find it convenient.

It's about me and my relationship to God and to this world. It's about what I need and what I owe. It's about what I reap and what I sow. God is merciful. He/she/it forgives me and I don't have a choice in the matter.

Finally, because it's my birthday, please allow me to quote from “Great Expectations.” When I came to this passage last night, I found myself reading it over and over again.

“Joe made the fire and swept the hearth, and then we went to the door to listen for the chaise-cart. It was a dry cold night, and the wind blew keenly, and the frost was white and hard. A man would die tonight of lying out on the marshes, I thought.

And then I looked at the stars, and considered how awful it would be for a man to turn his face up to them as he froze to death, and see no help or pity in all of the glittering multitude.”

I'm not Pip. I see help in that glittering multitude. If it's not there, I still have a nice view.

My 54 years on this oddest of orbs have been pretty damn good. Happy birthday to me.

Wednesday: March 14, 2012

After two weeks of post-chemo hell, I've begun to recover. I won't have much time to enjoy it. It's back into the fire next week for my fourth and final round of treatment.
 
I hope “final” is not wishful thinking and that this awful medicine works. Most times it does not. Joanne, my friend at Kaiser, is evidence of that. She's been getting various forms of chemo for almost a year. She desperately wants to get better so she can enjoy the retirement she dreamed of having. It doesn't look likely; she's not getting better.

I believe I've got a chance to emerge from this hell I'm in. My tumor is now a dessicated bit of scar tissue I hope has entombed those cancer cells forever.
 
Unlike Joanne, this is my one and only shot at being cured. If it doesn't work, I'm done. I'm okay with that. Mary Lou is, too, which makes me grateful.

I'm not sure why I've delayed telling this story. It's an unpleasant but important piece of my cancer narrative.

On Day 3 of Round 3 of chemo, Robin was assigned as my nurse du jour. I decided to share my good news as she established my IV line.
 
“The tumor is pretty much gone,” I said.

“Problem is, it always comes back,” she replied nonchalantly.

She instantly realized what she had just said. Her face reflected the horror she must have seen in mine. She tried to take it back by telling me a lame story about a lung cancer patient she knew who went 11 years before his cancer came back. Nice try, idiot.
  
As she bloody well should have, she tiptoed around me the next couple hours.

“It always comes back.”

Those words haunt me. They remind me in a loud, quavering voice that the monsters under the bed are quite real.

Mary Lou called Robin the next day and, in a devastatingly calm and cold voice that even I fear, reminded her of her utter stupidity. Robin tried to apologize, but Mary Lou was not in a forgiving mood. The damage had been done.
     
“It always comes back.”