Monday, May 22, 2017

May 22, 2017 — Enough with the Battle, Already

I’ve written before about the many reasons why the familiar military imagery as applied to cancer survivors — her “courageous battle with cancer” — is not the most sensitive choice of words. I’ve seldom seen this topic explored so eloquently nor so concisely as in an article in the most recent issue of The Presbyterian Outlook.

The author is Ashley-Anne Masters, and the article is “Cancer Doesn’t Discriminate Between the Sinners and the Saints” (Presbyterian Outlook issue of May 29, 2017, pp. 48-49). She’s Interim Manager for Spiritual Care and the Heartlight Program at Lurie Children’s Hospital of Chicago:

“One side effect of cancer treatment that's as gross as nausea is the battle imagery. I can't stand hearing that someone who died from cancer ‘lost her battle.’ Anyone who ever endured cancer invading his or her body is anything but a ‘loser.’ The battle imagery is dangerous and painful. It implies that when someone dies of cancer, he died because he didn't fight hard enough. It implies that if someone chooses palliative treatment in the face of terminal diagnosis, she is giving up or not fighting.

It's also an unpleasant side effect for those living with cancer or thriving in remission. We celebrate and are grateful, yet battle imagery can add to a patient's symptoms of survival guilt. It does not mean he isn't (or wasn't) in the fight of his life during treatments. It does not mean she doesn't fear recurrence at annual scans. It does not mean they aren't strong and brave. But saying they ‘won the battle’ when they, too, have lost friends, colleagues and family members to cancer implies that they are somehow superior to the people they miss. Let's assist in savoring their celebrations and milestones. Let's not taint their gratitude and gumption with a prescription for guilt.”

Another reason, of course, why the battle imagery misses the mark — one that Ashley-Anne doesn’t mention, and in fact gets a little bit wrong — is that cancer is actually not an invasive disease, in the same way a bacterial infection is invasive. We don’t “catch” cancer. Cancer cells are manufactured by our very own bodies as a result of genetic mutations. While there’s sometimes an external cause that can be identified — as asbestos exposure is a leading cause of mesothelioma — it’s not the carcinogen that makes people sick, but their own body’s response to the carcinogen.

In cancer, certain cells of our body — for reasons that are often inexplicable — turn against other cells of our body: surrounding, quarantining and devouring them. That’s the true battle of cancer: not patient vs. disease, but cell vs. cell. The patient is the battlefield, not the steadfast soldier.

Visualizing ourselves “battling” cancer means we’re doing battle with our own bodies, and that’s hardly a helpful way of looking at it.

Friday, March 24, 2017

March 24, 2017 - Moving That Fear Threshold

Today, in the online Cure newsletter, I came across an article by a cancer survivor named Barbara Carlos, who’s noticed a change in the role fear plays in her life, since undergoing cancer treatment:

“I am not sure exactly how or when it started, but somewhere in the midst of chemo, I noticed a change. Things that used to make me crazy no longer bothered me. Other things that I had thought so unimportant that they had been left perking away on the back burner for years suddenly came to a full boil. It was confusing....I kept chugging along, constantly juggling priorities and re-prioritizing them. After a while, I noticed a change in my attitude. I was no longer afraid of the little things in life. I didn’t care if I wore the wrong clothes or said something stupid in a meeting. After my last chemo, I spent a week in the hospital with neutropenia and had another two weeks of bed rest at home. I didn’t physically feel up to doing anything that required more exertion than breathing, but my brain clicked away as I lay there. By the time I started radiation, the transformation was complete. I had become fearless. In spite of the nasty burns on my chest and the pain they generated, radiation was a piece of cake compared to chemo. I had made it through chemo and I was going to make it through radiation just fine. I had faced off the Emperor of All Maladies and won the battle. I felt empowered beyond words and completely confident that I was going to win the war.”

It’s similar to the experience I’ve had, over the 10+ years of my journey with cancer. And, I know from conversations I’ve had with other survivors, that it’s true for many other people as well.

“Whatever doesn’t kill you makes you stronger,” goes the old adage. It’s especially true of cancer.

One of the things we learn as cancer survivors is that our fear threshold is moveable. What moves it is the experience of facing our fears, not running from them. When we face a hitherto unimaginable challenge and move right on through it, we’re strengthened to face other challenges that may lie ahead.

We’re not free of fear as we do so. Fear can’t be so easily banished by positive thinking, nor even by prayer. Most of us don’t pray away our fears: we pray through them.

Often, folks are inclined to match up the word “courageous” with “cancer patient,” but those of us who’ve been through it know it’s not any virtue inherent in ourselves that helps us make this transition. It’s one of those Higher Power things, as our friends in AA would say. When we’re flat on our back on an operating-room gurney, and the anesthesiologist is about to open the valve on the IV line that will send us off into unconsciousness, there’s nothing we can do in that moment to influence the outcome. We’ve got to turn it all over. We have no other choice.

Those of us who are conversant in traditional religious language turn it over to God. Others may go the Higher Power route. But whatever language best captures our experience, there are times when we can sense that fear threshold moving. And the good news is, once it moves forward, it rarely moves back again.

Thursday, February 09, 2017

February 9, 2017 — Confirming What We Already Knew

Three days ago I made the trip to Memorial Sloan-Kettering in Manhattan for a repeat of the biopsy that didn’t work out so well. That was actually two biopsies: one of some lymph nodes in the left side of my neck that have become enlarged, and the other of some small nodules that have developed in my thyroid bed (the area where the thyroid used to be).

I evidently misunderstood what the nurse told me in an earlier phone conversation. Turns out, the lymph-node biopsy was successful after all, yielding enough tissue for analysis. The problem was with the nodes-in-the-thyroid-bed biopsy. This is the one they wanted me to come in to repeat, this time to Manhattan rather than to Basking Ridge.

That didn’t happen, though. The interventional radiologist in New York did an ultrasound of my neck, and after looking at the results she concluded it was too difficult, even risky, to biopsy the nodules. They’re located very deep inside the neck, and they’re surrounded by so many blood vessels that there would be the risk of internal bleeding that could be hard to control. Her largest needle is barely long enough to reach that spot, she explained, and the longer the needle, the harder it is to control its tip precisely. She promised I’d be hearing soon about the results of the lymph node biopsy, once the other doctors have had a chance to confer.

Yesterday, I got a phone call from my endocrinologist, Dr. Stephanie Fish, who ordered the biopsies. She confirmed that there is papillary thyroid cancer in the lymph nodes, the same type that had showed up in nodules on my thyroid gland five years ago.

This is further confirmation of what we already knew — or had at least surmised. Dr. Jay Boyle, the surgeon who removed my thyroid, told me back in July that the nodules were almost certainly a recurrence of thyroid cancer.

But there’s still no particular hurry to do anything about it. The protocol continues to be “watch and wait.” Dr. Fish told me that Dr. Boyle sees no reason to move up the date of my next scheduled appointment with him, which is in June.

I’m OK with this. It’s taken me some years as a cancer survivor to wrap my mind around the concept, but “watch and wait” is not a matter of ignoring the issue. In certain circumstances, it’s a treatment modality in itself.

To paraphrase ol’John Milton, they also heal who only stand and wait.

Thursday, February 02, 2017

February 2, 2017 - Again with the Needle

Late this afternoon, I was a the gym when my mobile phone rang. Caller ID said only "New York City." Realizing it wasn't a local emergency call involving a church member, and not wanting to step off the elliptical trainer, I let it go to voicemail.

When my 30 minutes on the elliptical were ended, I listened to the message. It was from Memorial Sloan-Kettering. Please call back because one of the nurses has a message for you from Dr. Fish.

OK, this is it, I said to myself. My biopsy results.

I called back, and was eventually connected to the right nurse. Yes, she did have my biopsy results: just not the results I expected.

The tissue samples from the lymph nodes were not diagnostic. (In other words, inconclusive.) Dr. Fish wants you to come in - to the main hospital in New York this time - and repeat the biopsy.

That was surprising to me because the needle-wielding doctor at the MSKCC Basking Ridge facility had seemed so confident she'd gotten a good sample.

Someone's going to phone me tomorrow to set up the appointment.

I'd call the news "a kick in the pants" were it not for the fact that getting another needle in the neck sounds worse.

Oh, well. Cancerland is full of surprises.

Tuesday, January 31, 2017

January 31, 2017 — Under the Needle

I haven’t posted anything here since last summer, because not much has been happening. Which is, of course, a good thing.

Yesterday, though, I went up to Memorial Sloan-Kettering in New York for a routine consultation with my endocrinologist, Dr. Fish. I’d had an ultrasound of the neck a week before, which told her that the lymph nodes on the left side of my neck that had been slightly swollen last summer are significantly larger now. That, coupled with a spike in certain chemical markers in my blood, indicates that thyroid cancer has very likely taken up residence in those lymph nodes, and is growing.

She recommended a needle biopsy of the lymph nodes, to confirm what we’re dealing with. (I asked her if it could be a return of the non-Hodgkin lymphoma, but she said she doesn’t think it likely. The blood test is pointing to thyroid cancer as the culprit.)

It was all very laid-back. Thyroid cancer is typically slow-moving, so there’s no particular rush about these things. For that reason, I was a little surprised a few minutes later when the doctor’s scheduler, seeking a date for the biopsy, asked, “How about tomorrow?”

I initially said no, that’s a little too soon, but when I learned the next opening she had was more than a month away, I took a quick survey of my calendar and said, “Why not? Let’s go with tomorrow.” I suppose there must have been a cancellation or something.

Which brings me to today. This morning I drove up to the Memorial Sloan-Kettering satellite facility in Basking Ridge, New Jersey for my ultrasound-guided needle biopsy.

Dr. Fish had clued me in to the fact that this would be done while I was awake, without anesthesia. “They’ll give you a little lidocaine,” she told me, “to numb the skin. But it’s a very tiny needle, so you’re not likely to feel any pain.”

Well, when I got there, the diagnostic radiologist who would be conducting the biopsy said there would be no lidocaine, because the biopsy needle is actually smaller than the needle they use to inject the lidocaine. The act of numbing the skin would be more painful than the biopsy itself.

I asked her if they had any lidocaine spray around, but she said no, they didn’t. That surprised me a little, but I figured, hey, they do this all the time, it will be fine.

I’ll say it ended up being not exactly fine, but tolerable. The doctor was right, the needle is very small. I’m so used to blood-test needles by now that I barely feel them going into my arm any more, and that was true of this needle as well, penetrating the left side of my neck. I did feel a distinct pressure from the needle as it advanced deeper below the skin, though. That pressure, bordering on pain, was uncomfortable, but the lidocaine wouldn’t have done much about that in any event.

Three punctures later, it was all over. I was lying on my side during that part of it, so the doctor told me I could watch it on the ultrasound screen if I wanted. I decided to do so. It was odd, watching the tip of the needle penetrate my lymph node, move up and down a few times, then come back out again.

Mission accomplished with the lymph nodes. Then, it was on to step two. Dr. Fish had also ordered a biopsy of the abnormal nodules that have appeared in my thyroid bed (where the thyroid used to be). Those are pretty stable, not having grown since last summer, but she figured that, while I was on the table, they ought to go ahead take a look at them as well.

This involved me lying on my back with my head stretched over a pillow positioned under the back of my neck. The target nodule was considerably smaller and a good deal deeper than the lymph nodes.

Same deal: very tiny needle, no anesthetic, but this one was aimed just below the base of my neck, smack dab in the center. This was a different sort of experience. Again, the surface puncture was barely noticeable, but the digging around deep inside crossed the boundary from pressure into pain. The doctor could tell I was in pain, and decided to stop after just one sample. She said she was reasonably sure she didn’t get enough tissue from the tiny nodule for a good result, but she didn’t want to proceed any further because I was clearly uncomfortable. The nodules weren’t the main target for today, she explained: the lymph nodes were.

I was grateful. If it had been strongly necessary, medically speaking, I would have been willing to tough it out. But I was just as glad when she decided to call a halt.

Results should be in within two or three days. It will be up to Dr. Jay Boyle, my thyroid surgeon, to communicate the results and begin the conversation about next steps.

Surgery will almost certainly be in my future — he told me that last summer — but the big question will be, when? The pathology results will tell us how aggressive my particular variety of cancer is.

It could be pretty soon, or it could be a matter of more watchful waiting.

The question will also be, what? Just an excision of the close-to-the-surface lymph nodes (fairly easy), or a removal of the nodules in the thyroid bed as well, with the risk of possible damage to the vocal cords?

Watch this space.