Archive for Cancer

Living With Cancer; the First Year in Review

“So how you doin’?”

ifight

It’s a question I get a lot when meeting up with friends I haven’t seen in a while. They typically ask in a sort of hushed tone, with a facial expression clearly projecting the concern they have for my well-being and the deep friendship they feel toward me. I always see it coming, I always appreciate it, and I always give them as much answer as they want to hear. It usually goes something like this:

“I believe I am one of the most fortunate and blessed cancer patients to walk the face of the earth. Cancer has been gentle but chemotherapy has left some scars.”

In August of 2014, after 5 sessions of chemotherapy, I was received a CAT scan and the disease was pronounced to be “in complete remission.” No signs of cancer could be detected. And the ugly effects of aggressive MCL have continued to remain at bay. But I’m not off the hook completely.

Chemo drugs are powerful killers.

killing_cancer_cellsThey are designed to enter your body, seek out cancer cells and destroy them. But as is often the case with deadly offensive assaults, collateral damage is a price you pay for the destruction of the invaders. And one of the major casualties was my blood cells.

About half way into my chemo regimen I began to feel tired and weak, particularly in my legs-that hasn’t changed yet.

A casual dog walk became a trek. Climbing the fifteen steps from the main floor to the bedroom often left me rubber-legged and gently panting. Naps were no longer indulgences-they became necessities. All this was the result of red blood cell counts reduced to below acceptable minimums.

You’ll remember from science class that red blood cells (and the protein ‘hemoglobin’ contained in them) are what carry fuel to your body parts. Muscles, bones and organs were clamoring for more oxygen and my heart was going pitty-pat to supply their demand. Meanwhile, I’m standing at the top of the stairs sucking air into my lungs and waiting for the lactic acid “burn” in my legs to subside. Thank goodness the bed is only a few feet away!

The weakness and fatigue have stuck with me and remain the most notable side affects of chemotherapy.

Almost overnight, both shoulders started hurting-bad. The pain was (and remains) equal, and located in the same places, in both shoulders. Joint pain is a common side-effect of chemotherapy, as is the skin rash and lesions I put up with for a few weeks. (on the upside of that, I was relieved to know that the blood spots I found on the sheets had nothing to do with bed bugs!)

I’m not as “sharp” as I used to be.

The pros call it “cognitive impairment”. Those of us who have trouble remembering their SS#’s or how to get home from the grocery store after chemotherapy call it “chemo brain”. Chemo brain can produce trouble concentrating, disorientation, memory loss, or difficulty organizing thoughts or finding the right word. Those symptoms emphasized (or is it “empathized”?) in bold seem to be my biggest challenges.

I had a portacath implanted a few weeks ago.

hardstickSince this adventure began, I estimate that I have been poked with needles at least fifty times. And all but a few of those needle pricks have taken place on the underside of my forearms or the back or my hands. That means that a few veins have been assaulted repeatedly with needles and poison and they seem to have decided that enough is enough.

I’ve become what’s known as a “hard stick.” Apparently, blood veins will only take so much abuse until they band together and collectively refuse to be coaxed to the surface of the skin, knowing they will be made to suffer yet another assault from a well-meaning phlebotomist or RN. In several of my most recent needle sessions, the “sticker” has had to excuse themself to go get someone more proficient at digging out and spearing those troublesome, hard-to-find veins. And that’s usually after they’ve made several failed yet painful attempts of their own. Enter the portocath.

A portacath, or “port”, is a small (about the diameter of a quarter) medical device that is surgically implanted under the skin. It is comprised of a reservoir with a catheter attached tPORT_1o it. The catheter runs through my jugular vein and into my inferior vena cava, terminating at the entrance to the right atrium of my heart. That allows for:

  • easy withdrawal of blood.
  • easy insertion of IV’s.
  • more efficient delivery of drugs.

The technician simply pierces the skin covering the port and enters the reservoir through the permeable top of the port. No hunting for uncooperative veins, and needle-stick pain is reduced substantially.

And that’s about it. The cancer cells that were not killed by chemo have taken refuge in some deep, dark burrow and been rendered harmless for now. Chemotherapy has left me tired and a bit foggy-headed, made my shoulders hurt and made my skin itch for a while. I would call my physical challenges more of a nuisance than anything, and certainly not comparable to what a patient with aggressive MCL endures. All these symptoms should improve with time-something I believe I have plenty of left.

In Memory of These Fighters

shayShay Grinkmeyer-Hamer, December 2014

cluster

Bill Cluster, February 2015

Katherine and FamilyKatherine Talon Grinkmeyer and Chuck Grinkmeyer (with me and my older brothers),
July 1953/December 2007

I’ve Decided To Eat Like an Ape

When I learned I had lymphoma one of the first things I did was try to figure out what to eat in order to help fight it.

apeseatI spent some time as a vegetarian back in my college days. And while I eventually abandoned that diet regime for something more “meat ‘n’ taters”, the experience left me with an innate sense of the important part that food plays in our health.

I can’t remember a time when I didn’t think I needed to drop a few pounds so over the years I’ve spent plenty of time looking for an answer to the question, “What should I eat?”

The answer I’ve come up with after seemingly endless hours of research? “I don’t know.”

As far as I can tell, neither does anyone else. Show me a purported expert and I’ll show you a diet guru who asserts just the opposite. For example:

  • The still-popular Atkins diet promotes low carbohydrate consumption and LOTS of protein (read: red meat, cheese, eggs). The USDA “Food Pyramid” recommends LOTS of carbs (whole grains, fruits, veggies) with protein being almost an afterthought.

Read more

“Complete Remission”; Here’s What That Means

cantsleepMy eyes slammed open around the same time as local radio personalities Bob and Tom. They went live on the radio at 6 AM; I, on the other hand, had nothing to do for hours. Despite it being un-customarily early, I knew there would be no returning to dreamland for me today.

I was nervous, full of apprehension and maybe even a little scared. I had a 10:30 rendezvous with Dr. R and his nurse Jennifer where I would learn the results of 4 months of expensive, inconvenient and annoying chemotherapy.

Jennifer had left a phone message the day before which partially allayed my concerns:

“Mr. Grinkmeyer, your CAT scans look absolutely wonderful; they showed no enlarged lymph nodes whatsoever.”

shirtpocketWhile that sounded like excellent news, I had jumped the gun on partial information before, assuming all was well when there was actually an “oh-by-the-way” tucked away in someone’s shirt pocket. I would not rest easily until I heard the magic words from Dr. Robertson himself.

They entered the room together, both smiling, which made Joan and I smile, too. Dr. Robertson sat across from me, grabbed my wrists (he always does that when he wants to drive home a point), leaned forward and delivered the verdict.

“Mr. Grinkmeyer, the CT scan shows no sign of cancer; it is in Complete Remission!”

Period. End of story. No “oh-by-the-way”s. Then he proceeded with his explanation of just what that term means and the caveats that accompany that very good news.

“Complete Remission means that a CT scan shows no evidence of the disease,” he said. “But as we’ve discussed before, there is no way to eradicate this type of cancer as of yet.”

Complete Remission does not preclude the possibility that there are cancer cells hold up in the caves, beaten, battered and bruised, licking there wounds and waiting to unleash an army of invaders at some later date.

How long will my remission last? Nobody knows; maybe a couple of months; could be a couple of years; with some luck, a couple of decades.

How will I know if/when the cancer has mobilized its forces and launched another attack on me? 

mantle cell lymphomaSymptoms will appear, symptoms that for the most part I was fortunate enough not to have experienced prior to my chemotherapy. Typically though, if the cancer does return from a state of suspended animation it will do so with a dogged determination that it did not possess during its first attack-I intend to not let that happen.

Modern medicine has done its job, at least for now. Chemotherapy beat into submission the Lucifer-like cancer cells that threatened the well-being of my healthy cells. Now the fight-the one for my life-is on, and this time I’m the one in charge of the outcome.

Next: How I plan to defeat cancer and live a long, happy and productive life.

“Today I’m feeling fine/tired/ like sh*t.”

Them: “So how you feeling?”
Me: “Today I’m feeling fine/tired/ like shit.” With chemotherapy, it’s a day-to-day thing.

I’m never sure how I feel until I return from my AM walk with the dog.

dog-walkingThat stroll provides me with the barometer I need in order to evaluate my physical state for the day, or at least for the next few hours.

Peyton and I set out to circumnavigate a 2-mile course around our picturesque neighborhood. If I’m able to complete the loop relatively easily, I know that my strength will accompany and support me throughout the day-feelin’ fine!

But some days I have to take a right on Washington Boulevard rather than following the river up to 70th St. before climbing “the widow-maker” and heading home. That’s what happened this morning.

 

“Slow down,” I reminded myself. “Stay on level pavement, stay off the hills.”

Of course the manly thing would be to push through the fatigue, maybe even break into a jog for a bit, but my doctor told me to “take it easy.” I have permission from a guy with a PhD to sluff off.

By the time Peyton and I rounded the final corner and began trudging the final 100 yards to our home, my legs were as weak as circus lemonade and I was breathing like a big bad wolf trying to blow a little pig’s house down. To make things worse, we’d only walked about a mile.

I now knew that today’s physical state would be dictated to a large extent by the unsavory effects of chemotherapy. I knew I would feel like shit.

cancer journalI fixed a breakfast of scrambled egg with Mexi-spiced beef brisket and organic sauerkraut from Trader Joe’s. I’m a stickler for a clean kitchen but when I went to find a towel for cleaning up after myself the cupboard was bare. So I headed downstairs to find some kitchen towels I suspected were in the dryer-and indeed they were.

But now I faced a dilemma; how can I get the towels, and myself, up those tortuous 14 steps without climbing the stairs? It was as if I’d slithered through an undersized cave entrance to rescue my missing cat and now found the adit too small to let us pass back through.

king-kong2Exiting the cave would involve some pain and discomfort but I’d recover; same deal with the stairs. So up I went, dish towels in hand. By the tenth step my legs were getting rubbery, my heart rate was climbing like Kong ascending the Empire State building and my head was woozy. But I continued my trek, one step at a time; “…eleven, twelve, thirteen fourteen.” I made it.

“It’s a day-to-day thing.”

Some days are better than others but they’re all good, considering my situation. When I feel physically bad I remind myself of my blessings; family, friends, good times past and future, and all the fine dogs I’ve had the pleasure of sharing a couch with. And I take naps, of course. Naps make everything better.

COMING SOON:

On the morning of Tuesday, August 5, I will motor on down to the Simon Cancer Center for a PET scan. A pretty girl will inject me with a radioactive substance to help my doctor determine whether or not the poisons I’ve been receiving every 28 days have been accomplishing their mission.

Then, two days later, Dr. R will share his findings with me and advise as to our strategy moving forward; did we beat the Satan-like cancer cells and cast them into the bottomless pit of “Remission?” Or are there still some left that need a good ass kicking via more chemotherapy. I’m wishin’ and hopin’ and thinkin’ and prayin’ that option #1 prevails.

“30 Days in the Hole”

Getting through the first 60 days of chemotherapy was pretty much a breeze. After Round 3, things took a nasty turn for the worse.

“Black Nepalese, it’s got you weak in your knees,
Take a grease-sick whore add a dirty dance floor,
It’s got your head spinnin’ round,
30 days in the hole…”
(Can you name that band?*)

chemo brainIn my last post I related my adventures during the first 60 days of my chemotherapy. In closing I concluded,

“Only two or three days…feeling the effects of chemo, and even then they were manageable.”

“Sixty days with chemo drugs coursing through my entire body, battling to save me from the diabolical Lucifer-cells, and very, very few physical problems.”

During days 60-90, all that changed. As I approach round 4 of my chemo I reflect on my last “30 Days in the Hole.”

The “Humble Pie” song referenced above speaks not-so-subtly about drugs and their effects on the user’s mental and physical states. And it appears that the long term accumulation of those drugs designed to incapacitate the cancer cells in my body has finally exceeded my ability to protect my non-cancerous cells from the drugs’ murderous effects. In other words, “I ain’t been feelin’ so good lately.”

The symptoms I described earlier have become the norm rather than the exception. Most of the last 30 days I’ve felt “…weak in [my] knees…” with “…[my] head spinnin’ ’round…” I’ve taken to carrying a cane when I have to walk more than a few steps due to my light-headedness and vertical instability.

The chemicals designed to send my cancer cells into a harmless and temporary hibernation are wreaking havoc on my blood.

bodyinvadersDuring my 28 day chemotherapy cycle, my white blood cell count rises to near normal and then plummets to dangerously low levels. I don’t feel physical effects of this plunge but I could be in big trouble if I contracted an infection. It is the white blood cells’ job to defend me against virulent microscopic invaders. But with them all dead or MIA a virus has free run to infect me and probably send me to the ER. While the cat’s away…

Red blood cells don’t escape the chemo massacre either.

It’s their job to deliver oxygen and with their numbers down I get “weak in the knees” and “my head [starts] spinnin’ ’round.” As I’ve stated before, a trek up 14 stairs can leave my legs feeling as though they’re two big condoms filled with Jello, and “my heart’s beating louder than a big bass drum.” (Can you name that tune?**)

I’m becoming concerned about the collateral damage taking place inside my body and I’ve begun to investigate more holistic approaches to healing. I’m not ready to reject modern medicine in favor of witch doctors and voodoo healers. But I am finding evidence that given the proper circumstances, the human body has an incredible ability to heal itself.

Further, my chemo sessions are limited to no more than five, and #4 starts tomorrow. When they’re done I’ll be sent home to live in remission until Big C emerges from its hibernation, pissed off and even stronger than before; then we start this chemo-thing all over again. Until then my battle with cancer will, to a much larger degree, be my own responsibility.

can no longer count on “miracles of modern medicine” to save my ass.

Exif_JPEG_PICTUREI’m the boss, the CEO of my own life; “I am the master of my fate: I am the captain of my soul.”

Of course I’ve always been all those things, but when you think your time on earth is unlimited there’s less urgency to life. But with a diagnosis of cancer that can change. I’m in no hurry to leave you all; I’ve got places to go, people to see, things to do. So I’ll be taking care of business.

“There is one simple thing wrong with you – you think you have plenty of time … If you don’t think your life is going to last forever, what are you waiting for ?” Carlos Castaneda

* From the song, “30 Days in the Hole” by Humble Pie (featuring Peter Frampton, BTW)
**”Bitch”, by the Rolling Stones.

60 Days of Mantle Cell Lymphoma Chemotherapy

On April 10 of this year, 52 days after being informed that something evil had established its reign of terror in my body, I received my first of several infusions of chemotherapy drugs.

mantle cell lymphoma

A God-cell fighting for my survival.

These man-made poisons were designed to prevent the invasive Lucifer-like renegade cells from multiplying and accomplishing their malevolent mission: outnumber and overtake my healthy, God-like cells. In so doing they would destroy the body parts/systems the good cells comprised (in my case the entire immune system, including thymus, spleen and bone marrow) leaving them, and ultimately me…dead.

(Hah! The joke’s on them! Where they gonna live once my meat suit is gone?

They’ll end up in the same ashes-to-ashes incinerator that the rest of me ends up in; lifeless little carbon remnants devoid of structure or purpose beyond being recycled into some unknown cosmic “who knows what?” Hopefully something picked up off the ocean floor by a poop-eating crustacean only to be pooped back to the ocean floor where the cycle is repeated for eternity. Meanwhile, my Spirit lives joyously on and my God-like carbon remnants become part of a big ol’ oak tree, or a really cool dog that runs free and plays with happy, loving children.)

The Lucifer-cells are formidable foes…

…and bringing them into remission (modern medicine has not found a way to eradicate the tribe that inhabits me-yet) carries the potential of some very unpleasant physical side effects. I was warned of chills, fever, nausea and vomiting, night sweats, shortness of breath and just plain feeling shitty. These potential side effects would be the result of collateral damage to the good cells; what kills the goose can also kill the gander if he ends up in the line of fire.

mantle cell lymphomaMy first chemo session consisted of one 9-hour day of infusion on Thursday, followed by another 5-hour session with a different drug on Friday. The drugs were administered slowly and carefully so as to monitor me for any of the aforementioned symptoms. Should I begin sweating, shivering or vomiting, the infusion would be halted long enough to counteract the side effect with more drugs; at that point the chemical dump into beleaguered body would resume.

Thankfully, and somewhat to my surprise, no additional drugs were required. None of those things happened to me. And except for this past Friday and Saturday, none of those things have happened to me in the 56 days since my first infusion of chemotherapy drugs (I endured a second session on May 8-9).

mantle cell lymphomaOn Friday morning I took the dog for a walk. We do a 1.5 mile loop around our picturesque neighborhood. Then I drop him off and repeat the first loop for a total of 3 miles. This day we got about a half mile from home and Peyton decided to relieve himself in the solid sense, even though I’d given him ample opportunity to do so at home before we left (I think he thinks he’s playing a joke on me).

Like the good suburbanite I’ve become, I whipped out the poo-bag and bent over to reclaim the dog’s “bizzness”;

I was un-vertical for about 30 seconds. (Note: I lived in rural Boone County for over 20 years and never had less than 2 dogs. In that time I never-not even once-picked up dog poop. Now each morning when I walk the dog I find myself part of a procession of urbanite dog owners parading around the block with a dog leash in one hand and a plastic bag [usually with a lump of something in it] in the other. Oh well; small price to pay for not spending every free moment cutting grass, mending fences or dealing with horse doo-doo.)

mantle cell lymphomaWhen I stood up the world started spinning forcing me to move my feet awkwardly in a drunken dance designed to keep me from falling into the remnants of Peyton’s elimination that remained on the surface of the grass. Good thing I was stone sober (as is typically the case at 8 o’clock in the morning), for I was able to remain upright until the earth stopped wobbling and returned to its naturally stable orbit.

Once I got my feet firmly planted on terra firma I found my heart beating noticeably quicker than normal.

For the next two days, every time I stood up I had to steady myself for a few seconds. And the 14 stair ascent to the upper chambers of our home left my heart pounding and me sucking air to catch my breath.

I was tired those two days and allowed myself the luxury (though they sometimes are more of a necessity) of a nap-or two. The morning of the dog walk I had to stop and sit twice before I made it home. The scheduled second solo lap was cancelled due to lack of interest and strength.

Only two or three days out of sixty feeling the effects of chemo, and even then they were manageable. I admittedly was not my usual cheery, chipper self, but with plenty of reminders of how much I had to be grateful for (and the fear of my sister-in-law admonishing me to “Be Strong!”) I was even able to keep a pretty upbeat attitude.

Sixty days with chemo drugs coursing through my entire body, battling to save me from the diabolical Lucifer-cells, and very, very few physical problems.

But the physical component of my challenge is only one of three I’ve had to face since my diagnosis on February 17.

There have also been some mental and emotional struggles. Those are two topics that warrant blog posts of their own-but not today. I have a few miles to walk before cocktail time and I never write while “Under The Influence.”

I Cried Today

(I wrote the following on April 29, two days into a “rough patch” that now has thankfully passed. But I wanted to share it because it describes a predictable low point in one cancer patient’s quest to outlive/outlast a historically formidable foe. I’m feeling good again, grateful that last month’s chemotherapy has not extracted too big a toll on my health.)

tearNot much, mind you, just a little. No drama, no cow-like “BWAHAHAHA!” bellowing, wringing of hands or gnashing of teeth. Just a few persistent little trickles down my cheek that I quickly dispensed of with the back of my hand.

I deserve to cry-I have cancer-

…although this is the first time since the diagnosis was presented to me that I did. What took me so long to sink into this little pothole of self pity? I came to realize that I’m sick, even though until just a couple of days ago I hadn’t felt sick.

I had my first round of chemo 19 days ago. For eleven hours over two days Kristen pumped me full of the poisons designed to kill the cancer cells in my body. We’ve all heard the horror stories of the after-effects of chemotherapy: fever, chills, fatigue, loss of appetite, diarrhea…and let’s not forget the granddaddy of them all-hair loss! But none of them pitched their tents in my body. And I haven’t been doing anything terribly different either.

Yes, I nixed fast-food joints that use “mechanically processed” chicken or beef (pink slime), and I’ve become far more selective about the quality of anything that goes over the teeth & through the gums (fewer processed foods, more veggies, better Scotch). I’ve been getting more exercise, too. It’s tough to relate to a life-threatening disease when you’re taking brisk walks and gingerly pedaling your bicycle along the Monon Trail. But that’s changed recently.

Two nights ago I was awakened by a sense that my skin didn’t fit my body anymore.

It felt too tight, like it had been left in the dryer for too long. My throat was wheezing from all the congestion in my sinuses and I had a headache. (And of course, my bladder felt full-4:30; right on schedule!)

fallstairsI stumbled down the stairs in search of a decongestant and a couple of aspirin. As I carefully navigated each step I noticed that I felt bad, but not in a way that I could recall feeling before. During chemo I’d been warned that my white blood cell (WBC) count would bottom out about now, leaving me vulnerable to…well, here’s what the Mayo Clinic has to say about that:

“With a low white blood cell count and, in particular, a low level of neutrophils (neutropenia), a type of white blood cell that fights infection, you’re at higher risk of developing an infection. And if you develop an infection when you have a low white blood cell count, your body can’t protect itself. Infection can lead to death in severe cases.”

“Death” still seemed a pretty unlikely outcome to this minor-yet-surprising discomfort but I couldn’t help but wonder if the white blood cell (WBC) destruction taking place in my body had something to do with the unsettling feeling I was experiencing. I suddenly felt that this was all real, that I was sick, that I had cancer and there were going to be unpleasantries to suffer.

I returned to bed and slept the rest of the night fitfully (after much fussing and tugging I finally got my skin to fit) and awoke without much thought of last night’s incident. But later that day, as I drove to have lunch with a friend, my wobbly-footed trek down the stairs the night before demanded my attention:

“Ahem; how you feelin’ t’day? How was you feelin’ 8, 9 hours ago?”

Our minds seem sadistic at times, don’t they? All the unpleasant memories that they keep bringing up, refusing, it seems, to leave us in peace. But our minds are not sadistic; to be so would be masochistic (did you follow that?) and masochism is a trait of the insane-and we are not insane, right? But our minds do demand we try to reconcile the disagreeable moments we all suffer; that we try to make sense, or explain, bad things that happen to us.

onetoomany

One cocktail too many.

Last night I experienced a physical discomfort. Its intensity could have been explained by having eaten something that didn’t agree with me or having had one more cocktail than was appropriate. Not too big a deal.

But I’d experienced both of those discomforts plenty of times before and this was different-not in intensity, but in its nature. And if the nature of my discomfort was unfamiliar to me it could only follow that the source of that discomfort was unfamiliar to me also. What could it be?

Chemotherapy. Chemotherapy necessitated by the cancer that polluted my bloodstream, bent on my physical destruction. I’d been cancer-sick.

I was shocked and upset, and for the first time felt that I was standing face-to-face with the enemy that wanted to kill me.

I pulled my car to the curb and contemplated the gravity of my situation.

The tears began to trickle now, gently and deliberately, as if each one wanted to comfort me and assure me that everything would turn out alright for me. As I wiped them from my cheek I thanked each one for its concern and asked that they be very selective about times they may show up in the future.

Light_vs__Dark_by_environautCancer, this round goes to you. But this fight is far from over and when it is, I will emerge victorious. You are “the dark side,” evil, vengeful and filled with hate. I fight with all the power of The Light on my side, fueled by the ultimate power of the Universe and the love of my family and friends. You are outgunned, cancer, and you will lose this fight. If you insist on continuing it, better pack a lunch ’cause you’re gonna be here for a while.

On Chemotherapy, Mustard Gas and the Garden of Gethsemane.

ChemotherapyAfter the seemingly perfunctory 20-minute wait, Dr. R tapped lightly on the door to announce his arrival to Joan and me. We, of course, invited him to join us in his own office, and he entered in his usual cheery, upbeat style, this time with his nurse Jennifer in tow.

I was glad to see the RN. She and I had communicated over the phone on several occasions since first meeting and I could tell by her smile that she was growing comfortable and supportive around me. I like to fantasize that after our meetings she tells the people around her that, “He’s going to beat this thing-he’s the one.”

********************************************************************************************************************************

Nurses get things done.

Never underestimate a nurse’s knowledge, compassion or expertise in their chosen field. I’ve watched them write prescriptions for the doctor to sign when he re-enters the room. I once told an oncology RN that my father’s in-home nursing assistance was going to expire the coming Monday. That would leave his care in the hands of two know-nothing sons, both with jobs, and his frail, aging wife.

“That ain’t gonna happen!” she told me.

And it didn’t-assistance showed up at precisely 10 AM. If you’re ever unfortunate enough to have to hang around a hospital, make friends with the nurses.

********************************************************************************************************************************

Jennifer assumed her position in a chair behind Dr. R as he (finally) unveiled the plan.

“There’s no hurry, mind you, but we need to think about starting chemotherapy.”

He explained the protocol in general terms and when I needed clarification, I’d ask a question then glance at Jennifer who would smile reassuringly back at me. We agreed on a start-date, April 10, and Dr. R said he’d see me again before session #3 started in May. He bade us a cheery “Adieu” and left Joan and I in the hands of his nurse.

"I don't think so-Homey don't play dat."

“I don’t think so-Homey don’t play that.”

I will receive two drugs, Rituxan and Bendamustine, on consecutive days, every 28 days for 6-8 months. Each session will take about an hour as an out-patient, with the exception of the first treatment. Side effects should be tolerable and while my hair may thin some, I probably won’t lose it all (but if it gets wispy I’ll probably hack it off-I don’t like wispy hair). Now, about that first treatment…

Rituxin is an antibody whose job is to sink its deadly hooks into a protein on the surface of cancerous “B” cells and kill ’em dead. I have about a billion too many of the vile bastards, so I’m looking forward to the internal carnage. However, the drug needs to be injected in very large doses the first time, and there is the possibility of an annoying side effect or two, namely;

• Headache
• Fever
• Chills
• Nausea
• Heartburn
• Flushing
• Weakness
• Dizziness

Despite the unsavory nature of these potential reactions, I was relieved to see that “pooping one’s pants” was not listed.

The first infusion will take 4-6 hours. Any time I encounter one of the side effects, the infusion will be halted and I will be fed a drug appropriate for relieving it. By mid-afternoon I should either be pleasantly blowed away, or in a state similar to one recovering from a frontal lobotomy.

kill-them-all-On Friday morning I meet Bendamustine for the first time. It’s job is simple; “Get in there, find those cancer cells and kill them. And don’t worry about collateral casualties-bone, muscle, skin, brain cells-eff ’em! Kill ’em all!”

To understand Bendamustine’s potential killing power, it’s interesting to consider its origins.

“The story of nitrogen mustard gas is perhaps the strangest in 20th-century science.”

mustard2
“As a chemical weapon it was brutally effective. Used on Belgian battlefields during World War I, it maimed, crippled, and killed many whose flesh was blistered away or who died from asphyxiation. It also was used much more recently in the Iran-Iraq- war, and was thought to be one of the lead “weapons of mass destruction” in the hands of Saddam Hussein.”

mustard“Nitrogen mustard’s strange turn, however, was its reincarnation a generation later in substantially lower doses as cancer chemotherapy. Physicians given the grim task of performing autopsies on soldiers who had died in 1915 from exposure to mustard made several seminal observations. The bone marrow of the dead soldiers was depleted dramatically, and their lymph nodes had shriveled away. These two effects in turn were applied to treatment of cancers affecting these specific organs, leukemia and lymphoma. Indeed, from the battlefields of WWI came the entire discipline of cancer chemotherapy. The agents live on now, both chemically and etymologically, in drugs such as bendamustine that are used to treat several cancers.”

The night before Jesus died he went to the garden of Gethsemane to have one last chat with his Father before he was tortured, then crucified.

“Going a little farther, he fell with his face to the ground and prayed, ‘My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.'” (Luke 22-39)

gethsemane

Jesus was saying to his Father, “Look, I know that I have to die for the world’s sins, but if we could do this without the flogging, the crown of thorns, the nails through my hands and feet and the spear in my side, I’d be open to an alternative. But it’s your call, not mine.”

Jesus was not scared of what was coming his way, but he was obviously feeling some trepidation. I’m not scared of what I’m facing either-but I’m feeling somewhat anxious. I can’t help but wonder if there isn’t a pill or two that I could swallow and thus avoid all the headaches, chills, fever, nausea, etc. Oh well; at least my pants should be clean for the ride home.

A Tale of Two Biopsies

happynurse“Okay Mr. Grinkmeyer, that’s it,” announced Cheery Nurse.

I was lying face down on an operating table with the top of my butt exposed to the three ladies in the room.

A blood pressure monitor was attached to one arm and to the other, an IV that dripped a “conscious sedation” cocktail solution into my grateful bloodstream.

The effects of the Versed to relax me, combined with the opioid narcotic to remove pain from the equation took me to a place I was in no hurry to leave, but my curiosity yanked me back to reality.

“That’s ‘what’? Are we done already?”

“Yep, we sure are!

“I must have fallen asleep” I declared. “It feels like I’ve only been here for five minutes.”

Cheery Nurse responded, “That’s all you’ve been here, five minutes. That’s all the longer it takes!”

I was confused, as this was my second attempt at having marrow withdrawn from my hip bone, and the first (unsuccessful) attempt took significantly longer. It felt different, too-much different. This one was quick and absolutely painless. The other, well…

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A big part of prescribing a cancer treatment protocol is “staging” it; that means finding out how effectively it’s invaded your body.

BlindPirate1While my PET scan revealed only cancer cells located in my neck, the odds were good that there were rogue pirates that had struck out on their own and taken up residence in my bone marrow and/or gut.

The way to find out about the first was to stick a big-ass needle into my hip bone, drill down to the marrow and suck some out. Then the pathologists could examine it and determine if any of the little cancer-bastards had taken up residence in my bone marrow.

When Dr. Robertson informed me of the necessity of this procedure I simply said, “Let’s go. Right now; let’s get this done.” I was semi-bluffing of course. There was no way that the Simon Cancer Center at Indiana University hospital was going to have a qualified bone marrow sucker just hanging around like a firefighter waiting for an alarm to go off-but they did.

Moments later I found myself dropping my drawers in front of Dr. R’s “Fellow,”…

…an advanced medical student working closely with him to get advanced training in oncology.

“So Brad, who’s gonna do this procedure?” I asked.

“I am,” he replied.

IU Health is a “teaching hospital.” That means that inexperienced medical-professionals-to-be are allowed to hone their skills on patients. And we all know that “hone their skills” means “get good at it by screwing it up a few times”; this at the patient’s expense, oftentimes.

I assumed my position atop the operating table that would serve has my personal torture chamber, oblivious to the waterboarding I was about to receive but happy I’d donned clean, colorful boxers (now you know) this morning.

From what I can tell, the bone marrow biopsy protocol goes something like this:

• Find a suitable place on the posterior iliac (hip bone) to withdraw the marrow.
• Numb the area where the withdrawal needle will penetrate muscle tissue to reach the bone.
• Pierce the surface of the bone and withdraw marrow.

Dr. R mentioned earlier that this should take about five minutes.

???????????????????????????????Brad treated my butt-cheek like a piece of dough destined to become bread, pushing deeply into my gluteus maximus with his knuckles, then releasing, then doing it again.

Then he began sticking me with needles in order to dull the pain he apparently knew he was about to inflict on me.Then he did it some more. And some more. For about fifteen or twenty minutes, not five.

He hit nerves that reacted to his assault on them by shooting piercing electrical pains all the way down my leg that crashed heavily into my foot. Not once or twice, but more like five or six times. I jerked, sometimes violently. I yelled and moaned. I feared I was going to pee in my clean, colorful boxers.

I did my best to be a big, brave man but these were involuntary reactions-

I had no choice in the matter. Just when I thought I was going to jump off the table, grab the nearest surgical scalpel and demand they bring me my wife and my get-away vehicle, Brad asked his nurse to go find Dr. R.

He approached from behind and as he squeezed my rear end every muscle in my body tensed; I felt a trickle of sweat run down my chest. I was determined to “take it like a man” but that became unnecessary. Dr. R knew immediately that I’d become shell shocked and called off the procedure.

“Let’s re-schedule this for next week with a sedative and pain blocker,” he instructed his staff.

“And a different doc,” I mumbled.

Today’s Takeaway

I’ve been around long enough to realize that in order to get good at something you have to be willing to screw it up a few times-that’s how we learn. I respect and understand the necessity for teaching hospitals. And I don’t mind being a crash-test dummy for a dedicated medical student-to a point.

Here’s my new policy when anyone new and different comes at me with a sharp object or other implement that might cause me unnecessary discomfort.

• “Have you done this procedure before? How many times?”
• “I respect that you need to learn and I’m willing to participate in you education. However…”
• “You get to hurt me once, maybe twice depending on the pain. But when I say ‘Enough’, you have to go and get someone who will not hurt me. My insurance company will get billed the same either way and I prefer the painless alternative.”

Brad and I both learned something today. Now he’s a better doc and I’m a better patient.

 

“On With the Chemo, Off With the Hair!”

lymphoma, mantel cell lymphomaMarch 14, 2014

We were presented with my cancer diagnosis on Presidents Day, February 17th. That had been nearly 30 days ago…

…and I still didn’t know for sure which particular “flavor” of mantel cell lymphoma (MCL) I had or what my treatment would consist of. But that would change tomorrow.

I’d been looking forward to this meeting with my oncologist as not knowing was driving me crazy. The thought of the shroud of uncertainty about my future being lifted provided an almost giddy anticipation of our meeting. On one hand, I felt that “giddy-ness” was arrogant and inappropriate for something as serious as a cancer diagnosis. On the other, I was happy for a mental state that was not allowing me to wallow in fear and self pity. But that was all subject to change.

On Thursday, the day of my appointment, I woke up with an entirely different mind-set.

Arrogance had been replaced with…not fear, really…but concern. The reality of what I might learn and what I might face caused me to once again ponder something none of us like to think seriously about-our mortality. I was feeling very much like a cancer patient, and I decided to spend the hour before Joan and I had to leave reading about cancer on the ‘Net.

I’d sworn off that practice the afternoon I researched MCL and read nothing at all that I wanted to know about. But like a moth toward a flame, I fired up the computer and dove head on into “going through chemo”. I should have stuck my fingers in the blender instead; it would have kept me off the computer and been less painful. After an hour of honest-to-gruesome horror stories I’d worked myself into quite a tizzy of anxiety.

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“Knock, knock.”

After the typical 20-minute wait in the typically featureless consultation room (“Why don’t they put some magazines in here?” asked Joan) the door swung open and the man with the all the answers appeared. The good-natured Dr. Robertson sat in front of me and explained his findings while Joan took notes. Here are the highlights of that conversation.

  • MCL is rare. Less than 4,000 cases are diagnosed in the US each year.
  • MCL cells are usually pretty aggressive but occasionally they are classified as unaggressive or “indolent”.
  • My cancer cells are very much of the indolent variety and while probably not limited to the lymph node on my neck, the doctor would feel comfortable prescribing “Watchful Waiting” as a method of treatment for me. That means we do nothing; just keep an eye on the cancer and wait for it to “act up.”
  • Patients who display my symptoms (none, other than the lump on my neck) and are offered the “Watchful Waiting” option comprise less than 10% of lymphoma patients. “Usually by the time a lymphoma patient gets to me they are very sick. You’re not sick at all; you’re normal.”

I usually wouldn’t be crazy about being called “normal” but I can roll with it this time.

But despite not being sick, I still have cancer. And I always will. Chemotherapy cannot eradicate MCL cells but it can put them into remission. I’ve decided not to opt for “Watchful Waiting” as I feel like a vile poison has invaded my body and I want it beaten into harmless submission and then cast out through the saloon doors like a drunken cattle wrangler.

So this round goes to me. I’m happy…no, elated…but I also know there will be more fight in my future. For the time being I’m going to thankfully enjoy my “normal-ness” and try to make something good and powerful come from my reprieve.

Up Next:

I kinda like this one.

I kinda like this one.

Bone marrow biopsy on Monday morning. If cancer cells are found, “on with the chemo, off with the hair!” If not, time to check the gut via endoscopy. If found, ditto above. If not, I become one of the 2% of lymphoma patients whose cancer is in fact contained in one area of their body. That would call for a little different strategy, but chemo stays in the mix. Anyone have a cool hat?