Friday, February 26, 2010

A Celebration: Why We Went to the Keys

First, a short geography lesson:

The Florida Keys are a chain of islands strung from the southern tip of mainland Florida -- due south, then turning west. (Here's a set of maps:
http://www.fla-keys.com/maps/ .) There are dozens and dozens of islands in the chain, but many of them are uninhabited and not connected to the major chain by roads and/or bridges. The major thoroughfare is US Route 1, which terminates at Key West -- the last inhabited island in the chain. (For simplicity's sake, building addresses throughout the Keys are identified by Mile Markers rather than by the name of the island. It's a wonderful system: if you're at your motel at Mile Marker 38 and you want to get to a restaurant at Mile Marker 24, you know to head towards Key West [i.e., towards Mile Marker Zero] and drive 14 miles. Capisce?)

The inhabited chain of Keys is roughly 120 miles long.

The islands closest to the mainland, Key Largo and Islamorada, are heavily developed and don't hold much attraction for Deb and me for that reason. If it weren't for the marinas full of huge sport fishing boats, marinas that are occasionally visible from Route 1, you wouldn't know you were on an island at all. And where's the fun in that?

And Key West, the island at the other end of the chain, has a reputation for hedonistic lunacy which it richly deserves. (There are a number of quiet, lovely old neighborhoods on Key West where the craziness never goes, but the "Bad Boy" reputation of the island is how most people think of it.)

BUT! Between the overdeveloped Upper Keys and the loopiness of Key West are many quiet islands which are charming and pleasant and (pardon the pun) as "low-key" as you could possibly want. And it is this in-between area that appeals so much to Deb and me.

The Middle Keys have a number of State Parks, beautifully kept, each of which has a different flavor from all the others. And this time of year, the parks are home to a wonderful assortment of migratory birds as well as populations of year 'round residents like the White Ibis (link to photo:
http://photohome.com/photos/animal-pictures/birds/white-ibis-1.html ) that you'd never see up North.

And the island that we tend to hang out on or near, Big Pine Key, is the home of the Key Deer population. Imagine, if you would, a deer that looks just like our typical White-Tailed Deer, but miniature in size. A full-grown Key Deer stands 30 inches at the shoulder. (Here's a link:
http://en.wikipedia.org/wiki/Key_Deer .) Industrial-strength cute!

So anyway, Deb and I stayed at Parmer's Resort (link:
http://www.parmersresort.com/ ), a place where we had stayed several years ago. It's located on Little Torch Key, which is adjacent to Big Pine Key. From there, it's an easy drive to 5 or 6 State Parks (to re-connect to Nature) or to Key West (to dis-connect from Reality). And during our week, we did both.

One of the remarkable things about the Middle Keys is the sense of caring community that so evident at every restaurant, store, library, everywhere you look. Most of the people you meet are full-time residents, and the occasional tourist you come across is staying in the area for the same reasons you are: the restful quiet, the parks, the beaches, the birdlife. You can strike up a conversation anywhere with anyone and be glad that you did.

We never had a bad meal -- come to think of it, we never had a mediocre meal. Fresh fish beautifully prepared, fresh vegetables, and a wonderful assortment of desserts -- with everyone claiming to have the best Key Lime Pie in the islands. And the beverage of choice (other than the fine wines and good beers) is cafe con leche (see
http://en.wikipedia.org/wiki/Caf%C3%A9_con_leche ), which Deb describes as being halfway between coffee-flavored ice cream and hot chocolate. Oh yes!

So, what's not to like? You're away from the crowds of the Upper Keys and those on Key West. You're surrounded by beautiful scenery, fascinating wildlife, and the (usually) warm air scented by the ocean on one side and the Gulf on the other. It's life at a slower pace. A pace you can adjust to easily and just... breathe. And be glad to be alive.

Even if you're not recovering from cancer...

Thursday, February 25, 2010

A Celebration: Why We Went Somewhere...

My plan is to tell you about our trip to the Florida Keys in three or four postings. I'm breaking the story into pieces because there's so much I want to tell you about the trip -- but I want to keep these posting at some reasonable length! So let's start with the "Why":

-- Last August, when I finished my chemo and radiation sessions, a number of folks asked me, "What are you going to do to celebrate?" Well, at the time, my mouth was so sore that I couldn't drink tap water, much less anything more interesting. And eating anything by mouth was similarly out of the question -- the food tube was still in constant use. (I suppose we could have spiked the Jevity I was ingesting through the food tube with rum or scotch or even beer, but that didn't occur to me until a couple of days ago. Simple lack of imagination, I suppose...) And I was pretty worn down from the treatments, so any kind of a celebration more involved than a short walk around a couple of blocks of our house was out of the question.

-- In September, when the squamous cell carcinoma was identified and removed, folks asked me, "What are you going to do to celebrate?" And I was still pretty much in the state described above. So while Deb and I were supremely grateful for the positive turn of events, I was still not ready to eat, drink, or do anything celebratory. So we were quietly grateful, and that was that.

-- In mid-October, when the PET/CT scan came back negative (which, the astute reader will recall, is the Good News To Receive), folks asked me, "What are you going to do to celebrate?" By this time, I was starting to eat and drink normally and my strength was starting to return. But the food tube was still in place, and I was under this requirement from my medical team that I had to prove that I could keep my weight up without resorting to the tube and yet another set of cans of Jevity. So that eating and drinking by mouth was more a competition than a pleasure: every pound gained was a victory, every pound lost was a defeat. (And this is an attitude about my weight that I have not shed. To this day, every time I step on the bathroom scale and see a number that's smaller than the day before, something in me begins to panic.) So celebration was something to see on the horizon, but not something I felt was immediately available.

-- In late October, the food tube came out, and folks asked me, "What are you doing to do to celebrate?" Well, you know, I had this pencil-sized hole in my stomach and a wad of dressing over top of it. And while I was grateful for losing the tube, I was now showering with a makeshift plastic cover over the middle of my abdomen. A classic "Two steps forward and one step back." Now I could see normalcy clearly in my future -- something to celebrate! -- but I felt I wasn't anywhere near there yet.

-- Somewhere in October or November, I suggested to Deb that we should plan a week or so away from home and the doctors and the treatment centers and the visting nurses and the Jevity and everything else that reminded us of the ordeal we were coming out of. But I wanted some time to make sure that I didn't need immediate access to the wonderful medical people who had taken such excellent care of me for so many months. We wanted to celebrate. We deserved to celebrate. But we wanted to make sure that the celebration resonated solidly all the way through our lives. So we selected a week in February. And we selected a place that we knew and loved: the Florida Keys.

-- Since then, Deb and I have been "plugging back in" to our normal lives. For me, this meant back into performing. Back into giving dinosaur lectures. Back into the life of our Quaker Meeting. Back into my juggling club. Back to working out at my health club. Back into my Healing and Transformation School in Meadville. Back into doing housework and building things and making things in the basement.

So by the time that our selected week came around (i.e., the week we've just been through) we were back to a wonderfully normal life.

And that was, perhaps, the greatest gift of our celebratory week: it was a great deal like the vacations we had taken together over the last 30-odd years of our marriage. It was a normal event. We ate well and drank well. We hiked through parklands and saw marvelous birds and lizards and butterflies. We paddled a canoe through mangrove forests. We watched sunrises and sunsets. We appreciated each other and held hands and hugged and laughed and stuff. We were a lot like we had been before the trials of the last year -- except more deeply grateful, more deeply in love with each other and with life itself.

So now, when folks ask us, "What are you going to do to celebrate?" we can tell them what we've done to celebrate: something wonderfully normal.

I've got photos to show and stories to tell. And all of this will be revealed sometime soon.

Promise.

Monday, February 8, 2010

"No Recurrent or Residual Disease Identified"

Y'know, it's funny.

Usually you think about positive statements being Good Things and negative statements being Bad Things. But medicine seems to work the other way around.

When I got off the phone with Nurse Patty, who quoted the above statement from the formal result of last Thursday's MRI and -- after I stopped hyperventilating, whooping and jumping around, hugging my wife, and choking back tears -- I started thinking about this.

Negative: Good. Positive: Bad. I wonder why.

(I mean, now that I'm not fretting about the results of last Thursday's MRI, I need something to fret about, don't I?)

Seriously folks, I was deeply concerned about this scan. It had been a long time since my head and neck area were examined this way and, in the words of my E/N/T doc, "If this cancer is coming back, it's likely to do so quickly" or words to that effect. And the reason for him saying that is that Salivary Duct Cancer is classified as "High-Grade." Which is a Bad Thing, because it means it has a reputation for being aggressive.

See? There you go again! "High-Grade": Bad.

I told Nurse Patty that I was sorry not to be at the Medical Center with her, so I could give her a big hug, but she assured me that the next time I visited, that hugs all around would be appropriate and readily accepted. So I gave my wife another hug instead.

The report went on to say that there was some thickening in my epiglottis (which is the magic valve in your throat that channels air into your lungs and food into your tummy -- and not vice versa), which I had suspected, because some food or beverage goes "down the wrong tube" more often than it used to. Nurse Patty said that this condition was caused by the radiation treatments and needs to be monitored, but at the present, it causes me very little trouble.

And there is the situation that my voice modulates itself on its own schedule up and down a half-octave or so, but that's become almost fun. (As in, "I wonder who I'll sound like this afternoon?")

Finally, it says that there have been some other changes in my neck since the surgeries and chemo and radiation therapies. (Well, duh.) But these changes are perfectly workable so far and some of them seem to be receding as I move farther away from my treatments last summer.

I've been telling myself for the last several days that I had done everything I could to contribute to my own healing, and that I was leaving the rest (including the scan results) in God's hands -- where such things belong. And much of the time, I was fine with that. But it is so tempting to try and pull the situation away from Him (or Her) and try to manage the results yourself.

And it occurs to you then how truly powerless you are in situations like this. Take your meds, get plenty of exercise and rest, eat sensibly, of course. But in the end, what your body winds up doing is still mainly out of your control.

I have this image at the moment of all of my doctors and nurses and medical technicians standing together and smiling at me.

They wanted this, too.

Thursday, February 4, 2010

Today's MRI

Deb and I just got home from the Chester County Hospital's Medical Center where the MRI exam took place. Boy, what a difference from the Johns Hopkins experience last May!

First of all, my anxiety level was much lower than back then. Faithful readers of this blog (at least those with good memories!) may recall that the previous MRI was aimed at helping make the decision whether or not to have more surgery done to remove the remaining part of my parotid gland. (The initial Modified Radical Neck Dissection led to the discovery and removal of the primary tumor. At least most of it, but maybe not all of it because there was one edge of the removed gland duct that wasn't completely "clean," meaning that some primary tumor might still be located in the remaining part of the gland. And to go back in surgically would be a major operation that would delay my chemo and radiation treatments by six weeks or so.) And I was getting conflicting advice from some very high-powered MD's who were specialists in head/neck cancers. But this time around, the MRI was simply to confirm that things are going well. No decisions needed on my part. Whew.

Second, the frame that held my head immobile this time for the 40-minute scan was completely open at the top. That is to say, in front of my face. And that caused me to wonder why the frame at Hopkins included a bar that went right across my eyes, roughly an inch or two above my face. Made me feel like Hannibal Lechter! I mean, if your skull is immobilized (which both frames did nicely), why would anyone put a barrier in front of your eyes that is likely to cause an attack of claustrophobia? I dunno...

Third, I knew better than to open my eyes in any case!

Fourth, I knew I had the love and support of so many wonderful people. Folks who were home or at work or off doing something else, but so many of them thinking, "Randy, I want you to lie still!" And that knowledge came to me as a chorus of well-wishes coupled to a simple request that I do my part.

So I lay there on the sliding table, perfectly still. Doing my part. And when it was over, the technician told me I had done a good job of keeping still. (Although she did not offer me a lollipop. Darn.) So all of you who were calling on me to stay immobile, please raise your right (or left) hand, pull it back behind your head, and give yourself a big, thumping pat on the back.

There. Now, didn't that feel good?

(It occurred to me on the way home that being perfectly still on the table would result in the clearest possible image for the examining doctor(s) to look at -- and the best chance to find anything unusual and/or unwanted. Somehow, I hadn't quite figured that out before then.)

So the results of the scan won't be known probably until Monday. And I promise to let all of you know just as soon as I do.

It's a beautiful day today. Above and beyond which, the sun is shining and the wind is down and the temperature is moderate and the birds are singing and the roads are clear of snow and I love my wife and she loves me. And I love all of you.

Thanks.

Tuesday, February 2, 2010

Written in Protein

One of the things I've promised to do in this blog is to describe the school I've been attending for the last three-and-a-half years. Here's the Short Version:

The school is founded on the notion that spiritual healing and self-transformation are available to everyone -- but that this may require some guidance and support from like-minded people. That rather than spending years in psychoanalysis finding out exactly why you feel depressed or frightened, it's possible to shift away from or dissolve those feelings without necessarily knowing the details of what caused them. That finding the true, healthy self that has resided inside of you all along may make the attachment to the past causes of depression or fear unnecessary.


And that's all I want to say about the school at the moment. Except to say that the experience has worked wonders for me and for my classmates.

Now, with that background, I want to relate an experience that occurred at the school this last weekend.

A fundamental tenet of the school is that meditation and chanting can be immensely helpful as we make our journey to higher enlightenment, to more freedom. The meditation part has been easy for me -- perhaps because it's so similar to what we do at my Quaker Meeting for Worship. But the chanting has been a major stumbling block. Of the three times I've tried to sit through a chanting session at the school, I'd twice felt it necessary to leave in the middle of the program. And the third time, I felt I was just "gutting it out" until it was over.

My negative feelings about chanting have ranged from tedium ("Why is anyone bothering to sit here swaying from side to side, singing the same thing over and over? I just don't get it!") to righteous indignation ("Why am I being asked to sing the praises of some Hindu deity about which I know practically nothing?").

None of my classmates seemed to have any problems with the chanting, which added to my bewilderment ("Why am I the only one who's balking at this?").

I had been ready simply to put the issue to one side ("I'm getting lots out of the school, but this chanting stuff just doesn't seem to be for me. So let's just move on to something else."). But it turns out that, to move to the next level within the school's curriculum, I would be required to join in the chanting -- and not just to "gut it out," but to immerse myself in the experience.

So last Friday night -- the night before the weekend school session started -- I had dinner with some classmates and brought up the above issue: If I can't figure out how to join happily with the chanting, then there was no future left for me at the school. That things would come to an abrupt end when classes ended in June. A very unpleasant prospect.

Rather than address my issue directly, my classmates began to talk about how chanting and the literature that went along with it had brought them new awareness, new strength, new comfort. And listening to these wonderful people that I held as close friends, I knew that what they said was absolutely true. They had latched into something very special, very quickly -- and I wanted to join them in this new experience.

And as I sat there sipping coffee, something in me shifted. Something clarified. Something that had been holding me back dissolved. And I felt strongly that I could join in the chanting and experience it fully.

Friday night, as I lay in bed, the implications of my new-found insights kept resonating, expanding, lighting new pathways. I slept well, but not until after I saw how much my life could change based on what I had found that night.

At the school on Saturday, it was announced that there would be a chant that evening. And rather than my normal attitude of "Geez, here we go again," I found myself thinking "Oh, this is great! I have a chance this evening to test out my new-found enlightenment. If I need to bolt out of the chant again this evening, I will know that my new insights are shallow and of little use. But if I can stay there and search for the peace and energy that chanting is supposed to provide, then I will know that I have made a major shift."

The daytime school activities that Saturday ended roughly an hour before the chanting was scheduled to start, and this left an insufficient amount of time to race out to a restaurant, grab a meal, and charge back to the school. I had known this beforehand and had brought a protein shake to tide me over until after the chant was done. But I knew, after drinking the shake, that it wouldn't be enough to keep me going for the several hours that the chant normally took. (My body's pattern is that, if I don't get adequate protein, I get shaky, weak, and grumpy. And would likely have to leave the chant before it was finished in search of a cheeseburger, pepperoni pizza, or other protein source.) In other words, my plan for a test of the new insights was in jeopardy.

Then Nancy -- one of my classmates -- came over to me and said, "Randy, I brought too much food for dinner. Is there any chance you are able to eat bacon? Would you like some of this?" Now, I wouldn't have killed for bacon at that point, but I would have been tempted to rough someone up for a rasher or two. But now, Nancy was offering exactly what my body needed without recourse to violence. She handed me a paper plate and urged me to take as much as I wanted. Her plate had four hefty strips of bacon along with the rest of her dinner, and I placed all four of them on my plate.

As I sat there, looking at my strips of porcine treasure, I started to wonder if they would be enough to see me through the evening. Then Donna -- another one of my classmates -- came over to the two of us and said, "I cooked a whole chicken just before I drove here. I cut all of it up and brought most of it with me. Randy, can you eat chicken, and if so, would you like some of this?" Oh, yes!

I placed slices of chicken breast parallel to the bacon strips on my paper plate -- feeling much like a Buddhist monk with his begging bowl. (At least, I guess that's how a Buddhist monk with a begging bowl feels when the bowl is loaded with such unexpected and deeply appreciated food. It's a very good feeling!)

The bacon had a mild hickory-smoke flavor and was cooked to perfection. The chicken was moist and very easy to cut and eat. As I ate, I heard my body tell me that it was ready to chant all night long, if that's what it were asked to do. Now if only my mind would stay open to new experiences, everything should work out fine.

And my mind co-operated and I joined happily into the chant -- both vocally and spiritually. And as the program ended, I heard me ask myself, "Darn! Is it over already? Can't we do just one more?"

So that's my story. I may be able now to continue with the school for years to come, but whether or not that happens, I feel empowered with new enlightment that I hope to carry with me every day in everything that I do.

The punch line? The message? It's this: the Universe is ready to take care of you, if you let it. But in order for that to happen, you may have to let go of a bunch of stuff. Stuff that probably wasn't doing you much good anyway.

Sometimes the message is written in strips of bacon and chicken.

Trust me.