28.) The Comeback Trail

No doubt about it, the ole “comeback trail” can be a long, hard, and often lonely road to travel.

As I’ve already mentioned, I like to run; but not for competition, not for accolades, and not so that somebody will be impressed or celebrate “me.”  I run for the discipline, for the joy of it, for the freedom, and for the celebration of “life.”  I prefer to run alone, or maybe with just one or two other running partners who are in it for the same reasons I am. But finding those kinds of running partners is super hard these days—everyone seems to be in it for the competition, or not at all—so, I run alone.

I run for health, for fitness, for endurance, and as part of my ongoing spiritual training.  My runs are typically couched in prayer and surrounded by praise.  Taking my cue from Colossians 3:17, I try to offer up each run as a living sacrifice of praise unto God.  If I run in some small competition from time-to-time, perhaps a 5K or a 10K, I run for the comradery, to help build local community, and for a cause—to try to raise funds for organizations such as CRF (Christian Relief Fund)—one of my favorites.

For me, running, like a healthy diet and accompanying cross-training, suits my lifestyle.  Even though research indicates that I’ll never “outrun my fork”—diet is far more essential to weight management than is exercise—still, running, I believe, helps me control my weight.  It provides me with some viable measure of personal control over my health and body maintenance.  It’s a general indicator of how well I’m doing overall—physically, emotionally, and, to some extent, even spiritually.

So, of course, when I think of “coming back” from the ravages of cancer, one of the first areas of consideration that I’m going to focus in on is my running.  In that regard, however, first let me say that I’m just glad to be here and to be, once again, back out on my running trail two or three times each week.

I am both humbled and haunted by the fact that this whole battle with thyroid cancer could be much, much more difficult for me than it is.  There is a type of cancer—anaplastic thyroid cancer—that is a virtual death sentence.   Shomon (2004) reports that, “The prognosis for anaplastic cancer is very poor, and less than 5% of patients survive 5 years. An estimated 10% of patients are alive at 3 years.  Most people do not survive longer than 6 months, and 80% do not survive beyond a year.”  While anaplastic cancer cells can develop from other types of less traumatic cancer, such as papillary and follicular thyroid cancer, I am grateful to God that, thus far, I have not been diagnosed with that.

But even for the significantly less deadly varieties of thyroid cancer—papillary, follicular, and medullary—the prognosis depends a great deal on the staging of the cancer.  According to the American Cancer Society, those diagnosed with Stage I and Stage II of these types of cancers—such as myself—have a five year survival rate ranging from 98% to 100%.  Those diagnosed with Stage III range from 73% to 91%.  But those diagnosed with Stage IV range from only 28% for medullary to 51% for papillary thyroid cancer (American, 2013).

For some people, looking in from the outside, some of these percentages and survival rates may not appear to look all that bad; hence the creepy idea that thyroid cancer is, somehow, one of the “good” cancers.  But try telling that to the person who happens to fall within the 2 or 3, or even the 20 or 30—depending on the type—out of every 100 people for whom thyroid cancer will prove to be 100% deadly.

So, while it remains to be seen what God’s plan for me will be over the long-run, for now—in the short-run—I’m just rejoicing that this cancer hasn’t been any worse for me than it could have been, and is for some.  I rejoice that I have a great medical team working with me and that, so far, the medical procedures have all gone smoothly enough.  After six months of some pretty radical stuff, I rejoice to say that I’m back up on the “comeback trail.”

However, I think it’s important to recognize and acknowledge the fact that, even after having overcome some of the major hurtles and, perhaps, dodging the proverbial bullet, if I’ve dodged it—perhaps I’m already shot through and just don’t know it, yet—that doesn’t mean the battle is over; not by a long shot!  In fact, I guess for some, recovery can be the toughest and most discouraging part of the journey.

This ole comeback trail, I’m finding out, can be a pretty tough row to hoe.  Being acutely aware of how much ground I’ve lost, and that I need to try to make up since being diagnosed with cancer six months ago, can be incredibly discouraging.  And, there are all kinds of other “bumps in the road” that an effect one’s recovery on this long and arduous comeback trail.

For example, I recently had to undergo surgery for umbilical hernia repair; something that should have been taken care of last year but had to be postponed until we could get a better handle on all this cancer stuff. This was my third major surgery in the past six months and the procedure left me very sore and unable to engage in any strenuous activity for quite a while.  Every medical procedure, at this point, seems exasperated by the fact that I have not yet fully recovered from my bout with cancer.

The comeback trail can not only be pretty tough physically, but it can also be rather “taxing” on relationships.  This, I think, is due in part to the intensity of the emotions involved.  Being diagnosed with cancer, or facing any potentially life-threatening situation, changes you.  Jeff Tomczek described this process well, I think, when he said:

Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. Let it out for yourself. You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world—strengths and vulnerabilities and everything between. Be that person forever. (Tomczek, 2012)

That doesn’t mean, of course, that everyone changes in exactly the same way; but—for better or for worse—we all change.  As Jeff goes on to note:

Your body will change first and your mind will follow. You won’t lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give in to what is happening and trust it. (Tomczek, 2012)

The thing is, while I, myself, struggle to “give in to” this new person I am becoming, others are having an even harder time accepting the new me; and some people, I’m afraid, simply aren’t going to like this “new version” of me very much at all.

One thing that does help with all of these changes, however, is that I do have a few “advocates.”  Every cancer survivor, every person who has ever faced a potentially life threatening illness or situation, every person who has lost an intimate someone very close to them, every person who has been diagnosed with PTSD—regardless of the origin—every person recovering from a medical condition or addiction, every person on the “comeback trail” needs advocates. We need enablers who will stand beside us, helping us interpret life and what is going on within us and around us. We need people who will help keep things in perspective for us, who will help us communicate with others and help others understand us, and who will serve as a buffer between us and this big, wild world all around us—a world we once thought we knew and understood, but which now seems to have shifted, somehow, to a whole new reality.  I am learning that a huge part of what we call “ministry” involves “advocacy”—simply “being there” for one another.

As Jeff noted in one of the quotes above, there really is a lot of “intensity of emotion that comes with fighting a life-threatening illness.” In that regard, there are a lot of things in this world that I seem to be growing increasingly passionate about; and other things of which I am, seemingly, becoming increasingly intolerant.  However, I don’t know if I sincerely care any more deeply about any of these issues than I once did, or if they simply serve as a potential temporary outlet for some of that pent up emotion.

My wife, Ne’, is quick to point out that I probably don’t want to allow myself to fall victim to one of the first things of which I,  myself, am becoming increasingly intolerant—that is:  puffed-up people who come across as being a little too full of themselves and seem to think they have all the answers; as well as people who just can’t seem to help being “stupid in no-stupid zones”—and, yes, I know I’M perpetually teetering on the brink of THAT one.

She is also quick to point out that all the various political, social, and spiritual “issues,” as important as they may seem at the moment, do not begin to compare with our overall mission as servants of Christ—loving, serving, reaching, teaching, and helping people fall more in love with Jesus!  “Why risk hurting a single individual,” she says, “or wounding a precious heart and, perhaps, turning them away from the Lord, for the sake of some social, cultural, doctrinal, or political issue?” And, I supposed she’s right—“again!” At least the Apostle Paul seems to agree with her, or she with him. He put it like this:

For though I am free from all men, I have made myself a slave to all, so that I may win more.  To the Jews I became as a Jew, so that I might win Jews; to those who are under the Law, as under the Law though not being myself under the Law, so that I might win those who are under the Law; to those who are without law, as without law, though not being without the law of God but under the law of Christ, so that I might win those who are without law.  To the weak I became weak, that I might win the weak; I have become all things to all men, so that I may by all means save some.  I do all things for the sake of the gospel, so that I may become a fellow partaker of it. (I Corinthians 9:19-23, NASB)

So anyway, I bend down to lace up my old, beat up Saucony runners and think about all the miles they’ve traveled, and how far they still have to go.  I imagine them asking me, if shoes could talk, why they’re not as fast, bold, and courageous as they once were, just a few short months ago?  I don’t know if I have the heart to tell them that they may never be that fast again.  (Yikes!  Now I’m carrying on full conversations with my shoes—still a little hypo???)

Shoes strapped up, muscles stretched, I turn and press myself into the wind, feeling the sun beat down on my dry, chaffed face and blistered lips.  Swallowing hard, I tentatively summon the strength to just put one foot in front of the other, then again, and again; settling into a slow-but-steady pace as the empty path stretching before me bids, “press on.”  The plethora of little aches and pains seems accentuated by the notion that all this effort is likely to produce little or no tangible results—at least, not in the short run—but, still, I’m compelled.

No doubt about it, it’s going to be a long, hard, lonely road—this comeback trail!

27.) I Think I’m a Survivor

I guess, as I’ve heard many an old cowboy say, “I’m in pretty good shape for the shape I’m in.” I am more than a little relieved to be able to say that, after a five-month ordeal involving two surgeries and a RAI (internal radioactive iodine therapy), requiring two hospital stays—eight days of hospitalization—three weeks of hypothyroidism, and a seemingly endless plethora of blood tests and lab work, my endocrinologist has finally given me the “all clear” with regard to this cancer that I have been battling.

What this means is that, despite some apparent uptake of radioactive iodine in my liver, after looking at both the body scans and the ultrasounds, my medical team sees no reason, at this point, to change the original diagnosis or accompanying prognosis.  The cancer is still listed as a T2N0M0—stage two, well-differentiated papillary carcinoma with no apparent spread to the lymph nodes and no distant metastasis to other parts of the body.

In other words, my medical team thinks that they were able to remove both tumors—a 3.5 cm. in the left hemisphere of the thyroid, and a .5 cm. in the right hemisphere—while they were still “contained” and before there was any spread beyond the thyroid gland.  However, the endocrinologist was also careful not to use the word “cured” and even went to some length to emphasize to me that, while life goes on as near to normal as possible, it is quite impossible to promise anybody that they are cured of cancer.

According to Weill Cornell Medical College at New-York Presbyterian Hospital, Department of Surgery:

Papillary thyroid cancer will recur or persist in about 25% of patients [some sources say 30%], and 80% of these recurrences will be in the neck. Recurrence occurs most commonly in the first 2 years after thyrodectomy. In papillary thyroid cancer, however, recurrence can occur up to 45 years after surgery… (Weill, 2013).

For this reason, I must return to my endocrinologist every year for a physical exam, blood-work, ultrasound, and possibly a WBS (whole body scan) using a tracer dose of radioactive iodine.

I guess I was feeling a little giddy with all this good news, so on my way home from the consultation, the Lord used a “chance” meeting—if there really is any such thing—with another thyroid cancer patient to sober me up a little and put this whole situation in context.  By His grace, I was privileged to meet, and share some time with, a woman named Kathleen, from the island of Maui.  We shared a cab from the downtown Honolulu clinic out to the airport, and then munched a few snacks and talked together while we waited for our respective flights.

Seven years ago, Kathleen was given the very same diagnosis as I—stage two papillary thyroid cancer.  She underwent the same treatment, as well—total thyroidectomy followed by RAI—and was given the “all clear.”  However, later tests and scans, at the three year mark, indicated possible local spread of the cancer to the lymph nodes; so Kathleen then underwent a radical neck dissection involving the removal of several lymph nodes, followed by another RAI. Now, at the seven year mark, tests reveal that the cancer has metastasized to her lungs and she is facing even more surgery to remove it, and the possibility of yet another RAI.

This story is often repeated among my friends on the ThyCa/Inspire online support community.  In fact, even as I write this, one of my close friends—Lolly, who lives on Maui—is on the U.S. Mainland preparing for a second surgery, scheduled for tomorrow. Last year, she went through the same procedures I’ve been through. Earlier this year, she endured a second RAI. Now, she must undergo radical neck dissection to remove recently discovered metastatic lymph nodes.

So, I’m glad that I met up with Kathleen; even if doing so cast a rather serious tone over what, otherwise, might have been an artificially jubilant day.  I think I needed to hear her story, firsthand, to help drive home to me the endocrinologist’s cautionary warnings.

Still, I know I have a lot to be thankful for; a lot to smile about. The surgeries are healing up okay, although my neck is still a little stiff and painful.  The effects of the radiation are still evident: swollen glands, numb and tasteless tongue—my coffee still tastes like burnt rubber—sores in my mouth and nose—several bloody noses each day—and my hair, while not falling out altogether, has become coarse, thin, and clumpy looking.

During my last hospital stay at Moanalua Medical Center on Oahu, I was struck by a number of patients on my floor who were also battling cancer and who had lost all of their hair. There was this one woman, in particular, who kept visiting all the other patients—a little social butterfly constantly moving from room to room.  She was just a beautiful, bright, rainbow of light to everyone else on the floor. But she, too, had lost all of her hair and wore a bright red bandana. I remember her warm smile and pleasant disposition; and how, though fighting cancer herself, she brought joy to everyone she touched.

While in radioactive isolation, I gave a lot of thought to this gal—I didn’t even get her name—and to some of the beautiful children I had seen, and my thoughts prompted me to perform a little ritual of sorts.  After spending some time in prayer and meditation, I shaved my head and determined not to ever grow my hair back out again. I’m making this commitment for several reasons: first, to honor all my compatriots who, like me, have walked this dark and scary road of having to personally battle with cancer—especially the children; second, to commemorate and remind myself, from this point on and throughout my life, of my own walk of faith through the stormy clouds of cancer—the emotions, the nuances, the struggles, and the victories; and third, because what little hair I have remaining to me seems to have become rather thin, brittle, and patchy—so I would rather look like an old NBA player than an old alien. Actually, I probably now look like an old, alien, NBA player. Anyway, as fate would have it, the bald look has become the new en vogue—putting me, once again, on the very cutting edge of contemporary fashion – ha!  What can I say?

I’m still trying to get back to some degree of hormonal equilibrium as my endocrinologist continues to try to regulate the hormone replacement therapy. I fatigue way too easily, my eyes are puffy and watery, and my body feels stiff, swollen, and bloated.  And, one of the worst symptoms, I’m way too emotional about everything—I rant, rave, and fuss about stupid little things that aren’t all that important; like having to replace a broken down washing machine or having to spend money on new tires.

When my dad, who just turned 80, actually called me—he’s never called me, I always call him—just to check on me, tell me that he’s praying for me—wait, what? dad is “praying” for me???—and to tell me that he loves me, I cried.  Well, after all, it was the first time in my whole life that I can ever remember my dad telling me that he loved me.  Still, my emotions are bordering on the ridiculous.  I can’t even seem to share a passage of scripture during our Sunday morning praise, or pray over someone in need, without having to seriously choke back the tears.  Even if someone I love simply makes a contribution to my “Relay For Life” cancer fundraising team, you guessed it, I cry—sheeesh!

On the other hand, I also laugh and laugh at things that really aren’t all that funny, like when my son-in-law had to be “rescued” by bay watch last week while out trying to learn how to surf.  He got caught in a current and was being whisked off to Tahiti and had to be retrieved by a life guard.  Why do I find that so hilarious?

One of the most physically and emotionally difficult aspects of this whole thing has been the terrible setback I’ve encountered with regard to my running, health, and overall weight-loss regimen.  Maintaining a rigorous training program is never easy to begin with and there are always new obstacles that rise up to “blindside” you—pulled muscles, sore joints, aches and pains of every kind, not to mention the human factors and various events and activities that are always competing with training time.  But, “cancer”???  That’s a pretty big “bump in the road!”

After embarking upon my new training program last year, I had lost more than 60 pounds—all the way down to 197 lbs.—and had gradually improved my running times to 45 minutes flat—nine minutes per mile—over a five consecutive mile run; nothing particularly impressive, but not too bad for an “ole dawg” like me.  But then, yesterday, when I finally dared to climb back up on the scales, I nearly collapsed in a heap when I saw that I had gained all the way back up to 240 lbs.—just a month or so ago I was at 220 lbs. OMGoodness… I’ve gained back over 20, and now over 40, pounds—seriously???”  That’s a lot of ground to have to make up; especially without a thyroid to properly and effectively govern my metabolism. My secret fear is that I won’t be able to get control of my metabolism and I’m just going to keep gaining and gaining until I become one great, big, gigantic couch blob.

Trembling at such a thought, I found myself almost braking into tears again—I’m just not myself these days. But I managed to maintain some measure of manliness and, instead, I just got mad and went for a run—which only turned out to be an insult added to injury.  While I had intended to “run” 3.5 miles minimum in about 35 minutes—surely I could manage a short, little ten minute per mile jaunt—I was only able to “jog” a total of 2.8 miles in about 60 minutes; actually I only “jogged” three-tenths of a mile, the rest was more akin to a “waddle.” Even more embarrassing was when a mom, pushing her toddler in a stroller, came racing by me like I was standing still.

Sooooooooo, life goes on—with all its thrills and spills!  And the reality is that, for all of us, there will be life-altering changes along the way.  We should never forget the Biblical admonition expressed by the “son of David,” King Solomon, who says:

I again saw under the sun that the race is not to the swift and the battle is not to the warriors, and neither is bread to the wise nor wealth to the discerning nor favor to men of ability; for time and chance overtake them all.  Moreover, man does not know his time: like fish caught in a treacherous net and birds trapped in a snare, so the sons of men are ensnared at an evil time when it suddenly falls on them. (Ecclesiastes 9:11-12, NASB)

This passage of scripture reminds me that I must eventually learn to live with a certain measure of vulnerability.  I am not as invincible as I, perhaps, once thought I was.  Having no thyroid, my survival now depends on a tiny little purple pill that I must take on an empty stomach, one hour before breakfast, at the same time every day.  And, without our complicated, modern medical processing and distribution systems making that medication accessible to me on a regular and continuing basis, I will slowly die the horrible death of hypothyroidism—creepy thought!  Of course, if push ever comes to shove, I suppose I can always take the “vampiric” route and derive my thyroid hormone replacement “naturally” by becoming one Hawaiian wild pig hunter.  I’ll leave the rest of that morbid thought to your imagination!  >>>a hem<<<

To balance Solomon’s practical admonition, I want to share with you another beautiful passage of scripture that has been repeatedly shared with me by a number of friends and loved ones in recent weeks.  It’s a message of hope that can be found in Psalm 91, wherein Moses, the alleged author of this Psalm, says:

He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, “My refuge and my fortress, My God, in whom I trust!” For it is He who delivers you from the snare of the trapper and from the deadly pestilence. He will cover you with His pinions, and under His wings you may seek refuge; His faithfulness is a shield and bulwark.  (Psalm 91:1-4, NASB)

This is a time in my life for deep gratitude.  A time for thankfulness.  A time for seriously contemplating and appreciating the power of prayer and the importance of relationship with God, and with people who love me.  It is also a time for celebrating at least a partial victory—praise God, I’m presently in the clear; the wolf prowling at the door has backed off, at least temporarily.

However, I’m still more than a little “edgy.”  I would never be so cocky as to say, or even think, that I have, to any great degree, kicked cancer’s ass. Rather, I feel as though I have, for the moment and by the Lord’s grace, dodged a bullet.  I’ve been granted a reprieve.  But there is an ever-present foreboding, residing somewhere in the dark recesses of my mind, that keeps reminding me that this cancer could, one day, very well rise up again to thoroughly kick my lil butt.

As a result, I have a new-found respect for every person who wears the designation, “Cancer Survivor,” and for the ever continuing psychological and physiological issues with which they must contend.  While life goes on, it will never be quite the same for any who have borne the diagnoses of cancer.

I guess I am one such “survivor” now, too.  But I find in that designation nothing much to gloat about.  It is not a source of pride for me.  If anything, it only produces a deep, abiding humility within me; along with a greater reverence for life, for health, for meaningful relationships, and for every good day I am granted on this earth.

Many cancer survivors have had it a lot worse than I.  I have a new-found respect and admiration, and a great deal more empathy, for each of them—and especially every person I know, some very dear to me, who, though they fought courageously, eventually lost their earthly struggle against cancer. Being a “survivor” makes me want to treasure their memory and celebrate their courage all the more.

And, finally, being a “cancer survivor” makes me want to express my deep appreciation to all of you who are our caregivers, our supporters, our lovers, our prayer partners, our advocates—those of you who not only “put up” with us, but who enable us to confront this enemy and go the distance, regardless of the outcome, with the emotional and physical sustenance you are willing to provide.  Some of you caregivers are survivors yourselves.  Some of you have suffered great loss at the death of loved ones.  All of you are our rainbows!