Monday, June 27, 2011

June 27, 2011 – Hope Will Find You

Saw a real gem of an entry on Dr. Wendy Harpham’s On Healthy Survivorship blog (June 2). Exploring the subject of hope, Wendy quotes Rabbi Naomi Levy, whose book, Hope Will Find You: My Search for the Wisdom to Stop Waiting and Start Living, chronicles her journey towards a deeper spirituality after her 5-year-old daughter, Noa, was diagnosed with a rare, fatal and degenerative neurological disease.

In a magazine interview, Rabbi Levy shares an anecdote from the time when Noa was preparing for her bat mitzvah, that rite of passage for girls crossing into the teenage years. With Noa’s learning disabilities, her mother didn’t quite know what she was capable of absorbing, when it came to studying the scriptures.

The Rabbi asked her young daughter what a particular Bible passage meant to her, and she replied, “‘Mom, I think what it means to me is, if you don’t like your life and things are not going well, if you try very hard you can find hope.’ Then she stopped and corrected herself. She said, ‘No…hope will find you.’”

Her mother reflects: “Noa was saying…that hope would find me, that hope was searching for us and that goodness and mercy and all these lessons are actually seeking us, tracking us down, and too often we are running away from them. We’re thinking it’s a struggle, but in reality what we can do is relax a bit and let all these blessings in, because they are all around us.”

Relax a bit.

Relax? Are you serious? When the bad news is coming so fast and furious?

Yes. No one said it would be easy, but there’s simply no other way.

In the medieval spiritual classic, The Imitation of Christ, Thomas à Kempis teaches: “To sum up, dear friend of Mine, unclench your fists, and let everything fly out of your hands. Clean yourself up nicely and stay faithful to your Creator.”

So much of spirituality is about letting go. And the first and greatest thing our desperate fingers are clasping is the illusion that we are in control. For a few seasons of life, most of us can carry off that charade to some degree, but eventually reality catches up. With a bang. Some hard piece of news may first turn our minds in that direction. Perhaps it’s a cancer diagnosis – or, in Rabbi Levy’s case, the unspeakably sad realizaton that she will one day bury her daughter. Even the most fortunate of strivers can’t keep the illusion going indefinitely. Eventually, even those titans who sprint relentlessly into the final lap must one day lean into retirement. Then, soon enough, come the gasping infirmities of age, and finally the awareness that Death will soon come calling.

The drunken Welsh poet Dylan Thomas counseled,

“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.”

Noble words, these, and not without a certain desperate bravery. Yet, in the end, the brash author of those lines succumbed to pneumonia, after imbibing huge amounts of whiskey on a bender lasting several days. It was by no means his first. Thomas was a tortured soul, who wore himself out in his frenzied pursuit of hope. Rage, however poetic, is hardly conducive to the discovery of inner peace.

We simply don’t have it in us to manufacture the variety or the quantity of hope we need. It can only be gathered in, and then only by those who have ceased to pursue it.

Young Noa Levy was wise beyond her years. Would that we all could be so perceptive.

Saturday, June 25, 2011

June 25, 2011 – On the Mend, Post-Surgery

I haven’t been as on the ball as I could have been, posting updates on my recovery. After returning home late Sunday afternoon, I needed another couple days to rest up, then on Tuesday evening I jumped back in with both feet, for our monthly Session meeting at the church (“Session” is Presbyterian jargon for “local governing board”). It’s been a whirlwind ever since.

Generally speaking, Memorial Sloan-Kettering was just great. Tremendous professionalism there, from every staff member I came in contact with. The one mix-up that could have been avoided was that I got a phone call from Dr. Boyle’s office on the day before my surgery, advising me that I needed to got to Manhattan immediately, for a pre-surgery testing appointment they’d only just made for me. It seems that, with the cancellation of my surgery 3 weeks before, no one had noticed that my pre-surgical testing (which had taken place 2 weeks before that) was now 5 weeks prior to my new surgery date. Since hospital policy declares that pre-surgical testing is to take place within a month of surgery, that meant I had to re-take some of the tests.

All they did was some blood work and an EKG, as well as have me undergo a physical exam by a nurse practitioner. I sure didn’t appreciate having to drop everything and jump on a NJ Transit train and then the subway, but I did make it there in the nick of time – then rushed back just in time to attend our niece, Elizabeth’s, high-school graduation that evening.

I even arrived in the city a little early – and so had 20 minutes to spare, to sit and listen to a lunchtime outdoor jazz concert at St. Peter’s Church, which just happened to be going on just as I walked out of the subway station. One of those quintessential New York experiences.

I suppose the error about the pre-surgical testing is understandable. It’s not every day that an operation is cancelled at the last minute, with the patient already on the gurney. I don’t imagine it happens all that often, either, that the rescheduling of said surgery exceeds the shelf life of the previous testing. It all worked out OK in the end.

A few random recollections on the surgery experience...

For over 5 years I’ve been going in monthly to have my port flushed, preparing for the eventuality when it may actually prove useful. So, when the pre-op prep nurse asked me if I’d prefer that she use my port rather than sticking me in the arm, I said, "Sure." Come to find out, she couldn’t get the needle into my port – and neither could another nurse she called in to try to do it. Both kept shaking their heads and saying my port is the tiniest little old thing they’ve ever seen: a pretty small target to hit with that needle. I guess the nurses in Dr. Lerner’s office, where I go for my port flushes, are more used to that kind of port, because I can only recall one or two times in all the years I’ve been going for port flushes that they haven’t hit it on the first try.

Then, I learned they probably couldn’t have used the port, anyway, because no one’s been able to get a blood return out of it for the past year or so – something that happens to these devices, as the years go by, which partly limits their usefulness. It still works with stuff going in, but there’s evidently some kind of one-way blockage that prevents them from pulling blood out the other way – something they surely need to do in the hospital, for certain blood samples and the like. Makes me wonder why I still go through the trouble of those monthly port flushes – although every time I ask Dr. Lerner about it, he says we may as well leave it in, because if I ever have to receive chemo again, it'll be useful.

I was surprised to learn from the pre-op prep nurse that MSKCC has recently enacted a policy of asking patients if they’d prefer to walk into the operating room, rather than being pushed in on a gurney. Evidently, there’s been some kind of study that’s revealed that certain patients find the surgery experience less stressful if they walk in under their own steam and hop up on the table.

No thanks, said I. My mental preparation for surgery involves going into sort of a zone where I just lie back and let it happen, and I find it easier for that to begin on the gurney, rather than in the operating room. So, I let ‘em push me. Different strokes for different folks.

They actually ended up inserting my IV needle in the operating room, because of all the time lost fussing around with the port. Not the usual plan, and I could tell this was causing a delay in the tight-as-a-drum operating-room schedule. The anesthesiologist herself did it, and she had a little trouble finding a good vein – evidently she’s not as good at it as some of the nurses are. She ended up sticking me in the back of my hand (never my favorite place, because it hurts like blazes) for an initial dose of anesthetic, then her plan was to put in a second needle in the middle of my arm, a place she told me it would really hurt, after I was zonked out. So, I woke up with two needles sticking out of my arm, with the one in my hand in an awkward place where I kept bumping it on things later.

I never did see Dr. Boyle after the surgery. He did come out and talk with Claire, of course, and told her that everything was successful. There was indeed a tumor visible on my thyroid, and he could see no sign of lymph node involvement – a good thing, though not something he’d expected to see, because the CT scan had indicated the lymph nodes looked clean.

The doctor I saw every day in the hospital was Dr Boyle’s fellow, Dr. Arash Mohebati. He’s the one who had initially marked my neck with a Sharpie, pre-surgery. That seemed to me an odd little low-tech safety check, in light of all the pre-operative scans that had been done – I suppose it’s ostensibly to make sure they don’t wheel me into the wrong operating room and take out my appendix instead. Still, the Sharpie routine seems a little ridiculous, since a specialized thyroid surgeon ought to have no trouble figuring out where the thyroid is located – and doesn’t need to rely on his own fellow to show him with an x-marks-the-spot, in any event.

I was really pleased with Dr. Mohebati. Compassionate, knowledgeable, a good communicator, unhurried when I had questions for him – in short, everything a good doctor should be. Even though Dr. Boyle is my official physician, Dr. Mohebati was there before, during and after surgery, and was really the person I dealt with, since Dr. Boyle’s involvement was limited to a time when I was unconscious.

My stay in the post-op holding area was way longer than anyone expected. After the nurse told me I had a place on the 17th floor, in the head-and-neck surgery unit (“our part of the hospital,” as Dr. Mohebati had put it), she came back and said “they took the room away from you.” Never did learn who the mysterious “they” was, nor why the last-minute change. I ended up going, just before 8:00 pm, to another room elsewhere in the hospital. When it became clear I’d need to stay in for the extra day to deal with the calcium problem, Dr. Mohebati came in and told me he’d arranged to have me moved to the 17th floor – which subsequently happened.

The rest of the stay was pretty uneventful. My Sunday-morning blood work showed a normal-enough calcium level, so I was released just after noon. In keeping with MSKCC’s new walk-on-your-own-two-feet policy, I was told I didn’t need to wait for a wheelchair, but could just hoof it out of the hospital on my own. So, that’s what Claire and I did. Felt more like checking out of a hotel room than leaving a hospital.

The ride home was a little uncom- fortable. I hadn’t thought beforehand about the distinctive experience of bumping along Man- hattan’s notoriously potholed-and-patched streets with a stiff neck. Behind the wheel, Claire did the very best she could, but she couldn’t improve on the condition of the streets. It wasn’t until we inched our way through the bumper-to-bumper traffic into the Lincoln Tunnel that things smoothed out.

On Monday, I was mildly alarmed about a tingling in my hands and feet, which I knew to be a symptom of low calcium. I spoke with someone in Dr. Boyle’s office, who relayed an instruction from Dr. Mohebati. He very helpfully suggested I double up on my calcium supplements (which are nothing more than Extra-Strength Tums) as well as my Calicitriol (a vitamin-D supplement that’s supposed to help build up the calcium level). By the next day, the tingling went away, so I guess that was just what I needed.

I’m taking daily Levothyroxine (Synthroid) pills, of course. The 200 mcg dosage is a standard figure, based on my weight. There will be blood work sometime in the next few weeks, in order to more carefully calibrate the dose.

I do feel a little different. A bit tired, with noticeably less appetite than usual (not a bad thing, I say, because getting to a more healthy weight has long been one of my goals). The neck’s been swelling a good bit, and there’s some stiffness under the skin around the incision – both of which, based on my reading, anyway, are normal side-effects. I’m supposed to leave the bandage on until it falls off, or until I see Dr. Boyle for the follow-up consultation this Wednesday, whichever comes first.

So far, so good...

Sunday, June 19, 2011

June 19, 2011 - Thyroid Surgery Update

This is a simple, no frills posting to announce that my total thyroidectomy was successfully completed on Friday, as planned. I'm writing this from Memorial Sloan-Kettering Cancer Center in New York City. The original plan was for me to be home by now, but they've kept me on here because my blood tests have shown my calcium levels to be a little low.

This is surely related to my parathyroids, a series of tiny glands that regulate the body's calcium supply. During a thyroidectomy, the parathyroids are removed from their usual position at the back of the thyroid and reattached elsewhere in the immediate vicinity. Sometimes it takes a little while for them to wake up after being moved, which is evidently what's happened in my case.

I'm very much in recovery mode: still a bit weak, but able to make my way for several laps around the hospital hallway without support. I'm also trying to remember to pick up the little plastic breathing toy they gave me, and inhale through it, in order to restore my full respiratory function, post-anesthesia.

The incision area looks neat and clean, a narrow, 4-inch strip of gauze under a semi-transparent bandage. The whole neck area feels stiff, and I can turn my head only with difficulty.

Claire will be by later today. We left the car in the hospital parking garage, and she's been taking the bus and subway to her sister, Ramona's, apartment in Washington Heights, where she's been staying at night.

The calcium level's been looking better with each blood test, so hopefully I'll get my marching orders today.

Monday, June 13, 2011

June 13, 2011 – To Say or Not To Say

In an article in the June 10 New York Times, cancer survivor Bruce Feiler shares a list of 6 things never to say to sick people, and 4 remarks that are always welcome. With one glaring exception, I agree with him.

Here’s his list of “Nevers”:

Nobody likes to answer this question, says Bruce. Rather than relieving sick people, this question puts the burden back on them to come up with something. Just do something, he says, and don’t worry about whether it’s exactly the right thing.

This is the one I disagree with him on, big time. On the contrary, I always find this incredibly comforting and empowering. He calls this a “mindless cliché,” a “hackneyed expression,” a “platitude.” I dunno, maybe I hear this often enough from people who are actually praying that it doesn’t strike me as false.

I had a few experiences, too, of people recommending their wacky cures to me. (Can you say, “Quack, quack”?) Worst of all was the guy who stopped by to offer me a “free” $40 bottle of açai juice, then made sure to tell me he and his wife were in this pyramid marketing scheme, and I could use my role of influence as a pastor to help a lot of other people by getting this healthy product to them, and... need I say more?

I’m glad you feel that way, but only hearing this from my doctor is going to make me feel any better.

Thankfully, this is one I never did hear from anyone – though I wouldn’t be too happy about it if I did. When you walk around with "Rev." in front of your name, I suppose people are less likely to talk down to you.

Yeah, heard this a few times. Didn’t believe it for a minute, under the circumstances. Actually, I do say this from time to time when I’m visiting people in the hospital – but only when it’s really true. I figure if it’s true, it’s worth saying. If it looks to me like someone’s making a robust recovery from surgery or whatever, I figure it’s encouraging to pass the observation along. Maybe I’m wrong about that. And yes, I realize my CPE (Clinical Pastoral Education) supervisor, back in seminary days, would never go along with it. (“Don’t try so hard to be comforting. It’s not your job to make the patient feel better. Focus on the person’s feelings and reflect them back.”) Yeah, right. I do that a lot. I did learn something in CPE. Yet, if there’s one thing I’ve learned from the actual practice of ministry, it’s that there’s no formula that works 100% of the time. Sometimes you gotta go with your gut. And truth-telling is always a good thing, when it can be done in a way that’s empowering.

So much for the Don’ts. Now, here’s Bruce’s list of Dos:

This is a good one. It says to the person, “I want to let you know I’m thinking about you, but I don’t want you to feel under any social obligation to respond. Save your energy for getting better!"

Don’t overstay your welcome. Always good advice. Being there’s the most important thing, but being there doesn’t mean hanging around indefinitely.

By this, he means “Change the subject. Talk about something else besides blood tests and IVs and prescriptions for a change." Yes!

“It doesn’t need to be ornamented. It just needs to be real.” This is the best one of all, for sure.

Sunday, June 05, 2011

June 5, 2011 – An AIDS Survivor’s Testimony

There’s a thought-provoking op-ed essay in today’s New York Times, written by a man who’s been living with AIDS since the early days of that epidemic (Mark Trautwein, “The Death Sentence That Defined My Life”). While there are many dissimilarities between HIV-AIDS survivors and cancer survivors – most notably the horrible stigma and irrational fears that still lurk around HIV-AIDS, and which were especially intense in the early days – there are also some notable similarities.

At one point, Mark Trautwein and his partner, both infected with AIDS, actually packed up and moved to a new home closer to Mark’s family, because they were convinced both were not long for this world and they would need someone to care for them in their last days. Then, the protease inhibitor class of AIDS drugs came out, and everything changed. Suddenly, their looming deaths were pushed back from “soon” to “sometime.”

With the medications that are now available, AIDS – while still a dread disease – has become transformed from a sentence of certain death to something more akin to the “incurable but treatable” NHL that I have.

I’d be very cautious, myself, in drawing any parallels between my story and that of someone struggling to stay healthy with AIDS – especially someone like Mark, who lived through those dark years when no one even knew what this new “plague” was, nor what could be done about it, short of quarantining everyone who had it – but I did have to nod with recognition at what he says he’s learned from looking death in the eye:

“For 15 years, death had been ever present. I'd thought about it daily, got familiar with it and planned around it. It had amazed me that people could walk around every day as if they were immune to it. Now I had to adjust to a life I'd been schooled to believe I'd never have. It was one of the hardest and most welcome things I've ever had to do.”

Even though, at the time of my diagnosis, my objective chances of survival with NHL were far, far better than those of the early AIDS patients, I still went through a major phase of asking all sorts of “what if” questions about my own death – some of them weighty and philosophical, others trivial and even silly. What if this is my last year on earth? What does it mean to “get your affairs in order”? How does one know when it’s time to do that? Is it worthwhile springing for that new crown the dentist says I need?

At mid-life, I’d scarcely begun to absorb the fact that I’m going to die someday – not so much an intellectual realization as an existentially, gut-level one. Suddenly, the thought was with me constantly. I felt like I’d been sleepwalking for years – and, like Mark, I looked around at all the healthy people and wondered how they could be so oblivious to it all. “Why waste your time watching reality shows, people?” I wanted to shout. “Don’t you know your own reality is precious, and of limited duration?” (Thankfully, I kept my mouth shut. I could have been a real downer at dinner parties.)

Aware of my own “incurable but treatable” NHL diagnosis, I was curious to read of Mark’s perspective after 30 years of living with his own:

“My relationship with AIDS is one of my most enduring ones, and has both enriched and beggared my life. It robbed me of friends and loved ones, and with them memories we would have had and repositories of my own history. It ended a career I loved. It cost me a marriage. My intimacy with health care in America has been costly and exhausting. I know these are small prices to pay for life.

What I've gained is precious. Above all, the constant companionship of plague has taught me that life is about living, not cheating death. Fighting disease is required and struggling with life inevitable. But I accept the outcomes now, whatever they are. My disease does not make me special, nor does my survival make me courageous.

On that day I walked from the hospital knowing I had "it," I was given a great gift: the realization that we all dangle from that most delicate of threads and that the only way to live a life is to love it.

I haven't died on schedule, and I've been learning not to live life on one either.”

I don’t swallow 25 pills a day for my immune-system disorder, as Mark does for his. Nor do I have to worry about lingering social stigma. My daily road is still far easier than his. After more than 5 years of watch-and-wait monitoring – and even a recent PET scan that showed no potential lymphoma “hot spots” at all, though it’s surely still there – I’m even beginning to wonder if I’m losing the keenly introspective, philosophical edge I had back in my chemo days. Back then I felt lousy, physically, but in terms of spiritual discernment I felt like I was near the top of my game.

I hope I still love this God-given life as much as I did then. Yet, I’m also realizing how easy it could be to fall back into the poppyfields and go back to my blissful, pre-cancer slumber.

Cancer’s lessons are hard-earned. I hope I don’t lose them.

Friday, June 03, 2011

June 3, 2011– A Virus with No Name

I still don’t know what malady I came down with, that led to the postponement of my thyroid surgery. One thing I did discover, though: if you’re going to get sick, don’t do it on a holiday weekend.

I started feeling headachey Wednesday, the surgery was postponed on Friday, but it wasn’t until Tuesday that I was finally able to see Dr. Cheli, our family doctor, to begin trying to figure out what ailment I had. He ordered blood work, so it wasn’t until Thursday (yesterday) that enough test results had come back to allow the good doctor to conclude.... Wait for it now.... “We have no idea.”

He called me again today, and left a voicemail. Some more detailed test results had come back. The verdict.... “We still have no idea.”

He’d warned me it could be that way. Seems there are a lot of viruses that slink in and out before medical science can figure out what they are. Guess I had one of those shy ones.

That doesn’t mean it didn’t pack a punch. It was only this morning that I finally began feeling like myself again.

The thyroidectomy is rescheduled for Friday, June 17. Now I’m playing catch-up, because for most of the past week I didn’t have energy for doing very much (and even if I had, I wouldn’t have wanted to put anyone else at risk of getting that pesky bug).

Somebody said the best way to make God laugh is to tell God your plans. I think I can still hear the Almighty snickering.