Archive for March 2014

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I was confused, as this was my second attempt at having marrow withdrawn from my hip bone, and the first (unsuccessful) attempt took significantly longer.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…

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

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.

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

“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?

You’re Right, Mr. Petty; The Waiting Is the Hardest Part

?(This post is the third in a series I’m doing about my journey through Cancer Country.)

It was 60 degrees and sunny at the Dallas National Cemetery on Thursday, February 27, 2014. Joan and her family were there to lay their father to rest with full military honors, just as they had their mother three short months earlier. The attendees were identical with one notable exception-I was not there.

It had been 10 days since my lymphoma diagnosis and today I would finally get some answers about what variety I had and how it would be treated.

Would I live a long life or die young? Was this going to hurt? Chemo? Radiation? Would I lose my hair?  “How ironic”, I thought later, “that while sympathetic to Joan’s sorrow I was totally self absorbed and nearly oblivious to the pain she was enduring.”

I wanted someone there to hold my hand so I asked my younger brother Steve to accompany me. We were led to the typical room with the typical chair and told that we would be attended to shortly yada, yada, yada…

After the typical 20 minute wait a young doc doing a fellowship came in and told us what the tests had found. He called it “mantle cell lymphoma”, a term that of course was meaningless to us. Then he left to make way for the boss-man, Dr. Robertson.

The oncologist told us much the same as his predecessor; mantle cell, radiation, chemotherapy, remission, all the cancer terms I was hearing too much of late. But he also explained that the needle biopsy I endured was not always a reliable indicator of mantle cell lymphoma; “I’d like to get a bigger tissue sample to examine, and we’ll do that via an excision biopsy.”

“You’re gonna cut my neck, aren’t you?”

I’d waited ten agonizingly long days to get some answers about my future with cancer. But there would be none forthcoming today.

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

The surgery was scheduled for Wednesday of the following week (March 5) and a PET scan for the day before. The biopsy would tell the docs exactly what I had, and the PET scan would tell them how much of it I had and where it was located throughout my body.

I relayed what I learned to Joan on my drive home and warned her that, “…it looks like I might be losing my hair.” I would soon discover that unless things turned out just right for me, I could wind up losing much more than that much sooner than I thought.

As I laid on the bed educating myself about mantle cell lymphoma the overwhelming thought running through my mind was, “You gotta be fucking kidding me! I could be fucking dead in 18 months!”

This was a rare form of lymphoma. Staging (the extent to which the cancer has spread as determined by the PET scan) was critical. Catch it early you may be okay. Catch it in stage 3 or 4 and you’d better be getting your affairs in order. I wanted answers and I wanted them now!

It would be five days till I got the scan, then I’d have to wait who-knows-how-many more to get in to see the doc. Yes Mr. Petty; the waiting is the hardest part.

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

I’ve become good at advocating for myself-that’s something I learned while watching my father die. There had been no follow-up appointment set with Dr. Robertson so with my biopsy and PET scan completed I took the initiative to call his nurse, Jennifer.

She set me up to meet with the doc the following Thursday, a full week away. I did not fancy having to spend another seven days wondering who was going to take care of my beloved Joanie next year, but what could I do? We continued talking but frankly…I’m a little foggy as to how the conversation proceeded.

She was talking about my PET scan; I thought she was asking me about it. She mentioned something about “…a large lymph node on the left side of the neck and another smaller one right behind it.”

“No,no,” I said. I told her I had the order request right in front of me and it specified “Skull Base to Mid-Thigh.” She responded that she already knew that as she was looking at and reading the results to me right now.

“What? What did you say? Tell me again!” I said.

“Mr. Grinkmeyer, your PET scan shows cancer cells only in the area on your neck.”

“You mean there’s no more c….r cells somewhere else in my body?”

“Well, it’s not quite that simple,” she replied. “The lymphatic system runs throughout your body; lymph nodes, blood, bone marrow. Dr. Robertson will explain in more detail when you meet on Thursday.”

“But for now, the PET scan finds cancer cells only in the lump in my neck, right?”

“That is correct.”

pacmanOkay, so I’m not out of the woods yet, but I’m not hopelessly lost in them without a trail of breadcrumbs either.

I’d been imagining this massive video game taking place right under my skin with thousands of little cancer Pac Men running willy-nilly , intent on devouring my healthy cells until my body collapsed into a shriveled up, shrunken-head-like pile. Looks like the bastards are under control for now.

It’ll be a long wait till Thursday, but a much less stressful one than it might have been. Maybe I’ll even sleep past 4:30 AM.