Sunday, July 10, 2016

July 10, 2016 — Living Beyond

Last December, I wrote a blog entry acknowledging the tenth anniversary of my first cancer diagnosis. I dared to hope it could be a sort of capstone for this meandering project. Maybe I was finally out of the woods. Maybe ten years meant I was “cancer-free.”                                    
Recent events have proven otherwise. My December annual visit to Dr. Stephanie Fish, my endocrinologist at Memorial Sloan-Kettering, turned up some abnormalities in an ultrasound of my neck. Several tiny nodules had appeared in my thyroid bed — the area where the thyroid gland had once been — that looked worrisome.  Dr. Fish reassured me that it was too early to tell if this was significant, but arranged for me to come back for another ultrasound in six months.

I’ve now had that follow-up test. Dr. Fish informed me there are unmistakable “signs of disease” in the thyroid bed, as well as some swelling of nearby lymph nodes. The usual treatment for recurrent thyroid cancer, she explained, is further surgery. Because I already had a routine follow-up scheduled with Dr. Jay Boyle — my thyroid surgeon — she told me I should ask him what treatment options he recommends.

Last week, Claire and I drove up to the Memorial Sloan-Kettering satellite clinic in Basking Ridge, New Jersey to see Dr. Boyle. He confirmed everything Dr. Fish had told me. The thyroid cancer is back. The truth is, it probably never left me. He’d warned me back then that it’s difficult to surgically remove every microscopic bit of thyroid tissue. That’s the reason for the radioactive iodine treatment I’d had at the time: it’s a precautionary cleanup of the whole area. But it’s not always 100% effective.

As for the lymph-node involvement, he told me that was visible even at the time of my surgery, but is of no greater concern than the newly-appeared nodules.

Well, what’s ahead? A biopsy?

The nodules are too small to biopsy.

A further radioactive iodine treatment?

Not likely. That’s a one-time approach, much less effective on the second go-round.

What about further surgery?

The nodules, he explained, are still very tiny and are therefore hard to remove surgically. They’re also located in an inconvenient place, close to the nerve that controls my vocal cords. There’s a ten percent chance of permanent hoarseness as a side-effect. Dr. Boyle knows as well as I do that I make my living with my voice.           

As for the lymph nodes on the left side of my neck, they’re closer to the skin and therefore easier to remove, but that would require a large incision that would do damage to delicate neck tissue. Such an incision would make further surgery in that area — should it ever be required, down the road — problematic.

Better to postpone surgery, he advised. Thyroid cancer is typically slow-moving. At 59 years of age, I just may outlive it. If I do reach the point where surgery is indicated, it would be just as effective then as it would be now.

The treatment Dr. Boyle recommends is one that’s become familiar to me as a non-Hodgkin lymphoma survivor: watchful waiting. Dr. Fish has already ordered a follow-up ultrasound for six months from now. Dr. Boyle thinks that’s an appropriate precautionary step, but he doesn’t expect to see a big change.

A short while after our visit to Dr. Boyle, I had a conversation with a friend who’s a breast cancer survivor. She’s had a long series of surgeries and treatments. She, too, is not in any immediate danger, but her scans have revealed some recurrent disease.

My friend told me she’s stopped updating friends and family about every detail of her situation, because it’s hard for others to grasp what watchful waiting really means. “We’ll always have cancer,” she told me, frankly. “People who haven’t lived through it have a hard time understanding that. They don’t understand that the most aggressive treatment isn’t always the best choice.”

My situation exactly.

Recently I read a little article in Cure magazine by Mike Verano, a psychotherapist and cancer survivor. It’s called "Moving On After Cancer." Mike’s point is that few people are ever able to move on after cancer, to attain the much-heralded “closure.” Most cancers are simply not that sort of disease.

Mike has this to say:

“Thirty-plus years into the practice of psychotherapy, I’ve learned that telling someone that their recovery depends on ‘moving on’ is akin to telling a depressed person to just ‘be happy.’ My approach these days is to talk about living with rather than living without, allowing over forcing and, most importantly, realizing that life moves on in wellness and illness, joy and suffering, pleasure and pain. I firmly believe that illness does not halt this process; it does not put the brakes on existence. Feeling stuck comes from a trick of the mind that sees suffering, of any kind, as an unnecessary detour and waste of time.

Once we allow our lives to unfold with cancer as part of our experience, we awaken to the literal meaning of the word survive which is ‘to live beyond.’ This is the wisdom of being told that we become survivors on the day we receive our diagnosis. Thus, the need to discover the way ahead, to put psychological, emotional and spiritual distance between ourselves and the illness is already being met. Therefore, the work is often a matter of staying out of our own way as we move through this process.”


Survival as “living beyond”: I like that insight. It sounds positively theological. Jesus Christ says he has come that we “may have life, and have it abundantly.” It’s so very easy for us to ascribe to cancer the power to make this God-given life less abundant than it already is. Cancer has no such power.

We watch. We wait. We live. We love. We have cancer.

We live beyond.

3 comments:

Unknown said...

My thoughts and prayers are with you Carl, as you "watchfully wait". Its truly a billboard of your faith, that shows others how to do this...
God Bless
Deacon Greg

Carl said...

Thanks, Greg.

Dr. Robert Mokbel said...

I inspire patients and families to constantly view for the miracle but don't try to define it. In other words, if the only wonderful we are looking for is the big one -- the one where there is an amazing cure -- then we will most important miss the other miracles that are flowering before our very eyes, each and every day.