A Scare, A Revelation, An Affirmation, A Ray of Hope

My Healing School had scheduled a 5-day retreat for us in upstate New York. Three full days plus an additional half day at each end. Folks who had been to last year's retreat spoke very highly of the event and strongly suggested that everyone who could attend should do so.

So I really wanted to go. But there was this one concern: did you notice the phrase "upstate New York" in the above paragraph? Yeah, thought you would. Driving there would be much farther than any single-day trip I've done since my diagnosis last year. And long drives are, for me, may cause blood clots. Which I've had enough of, thank you.

(As reported in an earlier posting, it's extremely likely that the 11-hour drive to South Carolina several months ago resulted in the formation of a clot in my left leg. One which was made worse by the 12-hour return drive. The difference between that trip and the one I contemplated? Back then, I wasn't on blood thinners, I wasn't wearing compression stockings, and we drove with minimal stops. A Bad Plan, as things turned out. This time around, I knew more and would be much better prepared. The question, unanswerable before the trip, was: would the better planning and a shorter trip be enough to avoid new clots?)

So I signed up for the retreat and promised myself that. in addition to the blood thinners and the stockings, I would stop every two hours during the drive; get out of the car for at least thirty minutes; and walk around and/or eat and/or read and/or do something else with my feet elevated. No getting back in the car for at least a half hour. (A bit of irony showed up here: all the stops meant that the trip took so much time that I was late in arriving at the retreat center. the more care you take, the longer the trip.)

If this plan worked well, it would literally "expand my horizons" as to what I might do in the future. Like drive with Deb to Massachusetts to see friends. Or fly with her to British Columbia for a vacation. If it didn't work well, there might well be additional medical procedures, more drugs -- including self-administered injections -- and goodness knows what all else. In short, the trip to upstate New York was something of a gamble with high rewards on the win side and heavy penalties on the lose side. Got it? Good!

So I showed up at the retreat center (Which was gorgeous! Ask me about it some time!) and settled in to the program set out for us. I was given the choice of sitting on a chair for the lecture parts of the program or sitting on the floor -- which is equivalent to keeping your legs elevated. So I chose the floor.

(Oh, one more piece of information you'll need to have this story make sense: the first indications of a blood clot in the leg is cramping in the affected area. Remember this, please.)

As the first full day of the retreat was unfolding, I got a cramp in my right leg -- the leg that had the big, threatening blood clot last year. I worked mentally and emotionally to pass this off as just simple cramp that would go away and not return. And sure enough, it went away.

In all honesty, I must tell you that it wasn't a severe cramp. Not one that made you hobble around the room or roll on the floor howling in pain. It was almost just a twitch. So from here on, I will call the phenomenon a "critch" -- something halfway between a cramp and a twitch. Because you might misunderstand if I called it a "twamp."

Think Elmer Fudd...

So the critch came and left. And I was delighted to have it go.

Now if you're paying close attention, you know what comes next, don't you? Sure! The critch was back an hour later. And it showed up in exactly the same place as the first critch, which happened to be in the meatiest part of the calf -- just where the pain of last year's blood clot showed up. And then it went away again.

I carefully thought back over the previous several days' activities, hoping to find a reason for a critch, but nothing came to mind.

Later that day, I got a very sharp pain in the same place that lasted for a few seconds, then went away. A super-critch. And all this was a repeat of the pattern established by the first two clots. And in each of those previous occasions, the pain worsened until I was on crutches. And I wouldn't be able drive my manual-transmission car home from New York if I needed crutches just to get to the car in the first place. And, the critch was in my right leg, so even if I had an automatic transmission in my car, I would be S.O.L.

During the late afternoon and evening, the less painful critch returned five or six times -- always in exactly the same place.

So by this time, I'm examining my options: I can assume that I'm in the early stages of a new clot, "pull the plug" then and there on attending the rest of the retreat and head home -- to the medical staff I know and trust -- or I can assume that the critch is meaningless and will disappear completely and forever after a good night's sleep. And I chose the latter option.

Most of the next morning went without a critch, and the prepared contents of the retreat were truly moving and revelatory. So I felt I could just settle back into the retreat.

And you know what happens next, don't you, you clever person? Of course you do: the critch showed up again three or four times before lunch.

Now the deal about treating a blood clot is that the sooner you start treating it, the less threatening it is and the more likely that it will clear relatively quickly. And the longer you wait to get treatment, the more likely it is that the clot will break loose and head for your lungs, your heart, or your brain.

Which is what happened to my nephew a month ago. An event that killed him.

Okay, I tell myself, it's time to pull the plug. So I call my family doctor to try for an appointment back in West Chester the next day, but she tells me not to drive home wait, but go to a hospital immediately.

"But I'm in rural New York! What kind of medical treatment can I expect around here? What are the chances of getting a sonogram today?" I ask myself.

With the help of the school staff, I get a recommendation for a hospital located roughly 25 miles away. And Mildred (Have I told you that I've named my GPS? A constant travelling companion, the name "Mildred" fits nicely with the calmness and absolute assurance that the GPS voice provides.) knows the hospital by name and the quickest way to get there.

(All of the above was part of the "Scare" mentioned in the title of this posting. You probably figured that out, but I thought I'd just confirm that.)

So Mildred and I and all the belongings I brought with me head down the road to the hospital. And here's where the Revelation takes place. The hospital was located in a very small town, but the experience there could not have been more reassuring. Everyone seemed professional and prepared to take excellent care of me. And everyone I came in contact with did take excellent care of me.

And here's an indication as to how positive the experience at the hospital was: I hadn't brought any light reading material, which is a highly recommended asset for the hours of waiting normally associated with an Emergency Room visit, so I purchased a murder mystery at the hospital gift shop. The sonogram was over and done and I knew the results -- and I was only on page 32 of the book!

Here's another example of how good the care was: one of the ER staff overheard a phone call I made to tell the Healing School staff that things were okay, but that I was going to find a hotel locally and head home the next morning for a follow-up visit with my family doc. And that person took the initiative to call several local hotels that he personally liked to determine which one had space for me. I mean, how sweet and thoughtful and helpful is that?

(So in summary, the "Revelation" part of this experience was this: it is totally possible to get excellent care in a small-town hospital. And I realized that I had become so mentally and emotionally attached to and dependant on my West Chester medical support team, that I did imagine that was possible.)

Oh yes! The results of the sonogram! You'd probably like to know that...

The sonogram techs (there were two of them -- one was in training, but both were thoroughly prepared and professional) told me that they could clearly see the remnants of last year's clot, but that it wasn't occluding any blood flow. And there was no sign of any new clotting.

Hey.

(And the Affirmation? That my preparations for avoiding new clots had worked. That I could consider similar -- and longer -- trips by car or plane. That my body is working pretty well, thank you. That my self-imposed horizons can, in fact, be expanded.)

I was fortunate to get an appointment with my family doc on the afternoon of the following day. And after a bit of back-and-forth (thanks to the new HIPAA regulations), we obtained copies of the sonogram's report to look at during this follow-up visit.

My doc has great hands for this kind of exmination. She gently felt, pressed, and prodded my calf down to and including my ankle and foot. She told me that there was a strong pulse everywhere she felt, which helped confirm the sonogram results.

Okay, so all this is wonderful and stuff, but what about the critches? Her suggestion was "Your body is still healing -- recovering from last year's blood clot. Maybe what you're feeling is simply part of the healing process."

I still get a critch every now and then. But welcome them as a sign of health rather than a threat.

(So the Ray of Hope appeared as I stopped focusing so strongly on my medical problems and opened up my mind and heart to the potential for healing. Replacing fear and doubt with a renewed awareness of my potential for recovery.)

Since it turned out that I didn't have a new clot, the question might be asked: Did I make the right decision in leaving the retreat early? But for me, the decision was obvious, and the discoveries that came my way make the question a non-starter.

A Ritual Ablution

...and a clean carpet as well.

We have a cream-colored carpet in our living room. That's nice, because it brings sunlight deeper into the room than a dark carpet would have done.

But light-colored carpets do show almost everything that gets dragged across it, spilled on it, or ground into it. And our carpet is no exception.

Cleaning the carpet is my job. Deb handles all sorts of cleaning and straightening projects around the house, but wrestling with the carpet cleaner is my assignment.

During my illness and treatment last year, I couldn't even consider renting the carpet cleaner to do the carpet. I just no energy for such exertion. (But looking back on this is a valuable reminder to me: yes, I was that weak...) And as a result -- as the seasons came and went -- the carpet picked up a wide variety of stains. Coffee, tea, dirt tracked in from outside, and goodness-knows-what-all else.

So today was the day I decided to tackle this project. My strength is almost back to normal (although my stamina still has a considerable way to go...) and there was this opening in my schedule. So I sprinted off to Home Depot at 7:00 this morning, got the beast, brought it home, and got the job done. In fact, I went over numerous areas of the carpet two, three, or even four times.

It's still wet, so we don't know exactly how it will look when it's ready for use again. But at the moment, it looks wonderful.

And as I was cleaning, it occurred to me that every time I'd looked at the stains on the carpet, it reminded me of last year's treatments and my incapacities. And the stains themselves became a metaphor for the tumors that had been and those that might still be.

And they're gone. The stains, that is. I have an MRI in a few weeks to help confirm that the tumor situation is as clean as the carpet is now.

I still have anxieties to wrestle with. Fears to deal with. They come and go -- like the tides, like the breeze -- and I feel as incapable of dealing with them as I do trying to control the tides or the breeze.

But for the moment, our carpet is clean and I feel strong and healthy.

Hot, Hot, Hot!

(This is about the song, not the weather.)

(Most of you probably know this song: it starts out with a chorus of male and female voices singing "Ole / O-le / Ole / O-le // Ole / O-le / Ole / O-le," then heads into the main part of the song. Which is a celebration of... well, they never say what it's a celebration of, which is why I'm writing this. Stay tuned, all will be revealed.)

I graduated from my healing school in Meadville several weeks ago. Twice. Once on my way to the school and the second time when I got there.

Just between you and me, I wasn't all that interested in going. It's a 350-mile trip each way, which I have to break into pieces because of my blood-clot-in-the-legs issue. And I felt sure that I knew what the graduation ceremony would be like: The head of the school would coo and gurgle niceties about how hard we had worked and how much we had grown, then we might have cookies and punch. And we'd get a certificate. And, with any luck, spend an hour chanting the Guru Gita.

And none of this appealed to me in the slightest. Except possibly the cookies and punch -- and I didn't have to drive 6 or 7 hours to get cookies and punch. But I would get to see my classmates -- possibly for the last time -- and this was a major draw.

Well, I was completely wrong about the graduation ceremony that had been planned for us. Actually, we did have cookies and punch, but that was after a wonderful and deeply gratifying graduation experience. But that's not why I'm writing this. I want to tell you about my first graduation -- the one that happened on the drive to Meadville.

So, there I am, driving along in a pretty foul mood. This was taking a lot of time, gasoline, money and whatnot, and I wasn't pleased. So I looked around -- internally and externally -- for some reason to feel good. And other than the pleasure of seeing my classmates, the ol' "internal cupboard" felt pretty bare.

Seeking an external reason to feel good about things, I turned on my car's sound system, then remembered that I had several CD's already loaded. So I picked one at random and cranked it up.

After several songs that didn't lift my spirits much, the above-mentioned song, "Hot, Hot, Hot!" started playing. Now in case you don't remember, the second thing that happens in the song -- after the "Ole / O-le / Ole / O-le" chorus -- is some guy crowing the word: "Fi-EST-a!" Just like that. And suddenly, the world changed.

I mean, like, here's this guy calling for a Fiesta for no discernable reason. And the rest of this wonderful up-beat, up-tempo song makes you a believer. Yes, it is time for a Fiesta. For no reason at all. It just is.

And just like that, I realized the folly of my thinking. I had been feeling glum looking for a reason to feel good. And all the while I had the choice of feeling good and not looking for a reason to feel glum. It was all up to me. So Hallelujah anyway!

It is not the job of the Universe to make you feel good. The Universe is filled with opportunities for you to feel good and it leaves it up to you as to whether or not you will accept the invitation.

I played the song all the way through 6 or 7 times -- sometimes laughing, sometimes weeping -- with the last chords of the last playing still echoing through the car (I like my music loud!) as I pulled into Meadville.

Things that Change, Things that Don't

I had lunch today at the Pita Pit. You may recall this dining establishment from a posting last year. It's the place that my Coach, my Angel, (I've called her both from time to time.) found me sobbing into my sandwich shortly after I was informed that I had cancer.

And on that day, my Coach gave me some of the best advice that I got throughout my treatment: Don't let yourself become your disease. No matter what, never stop being Randy.

I've been back to the Pita Pit several times since my treatments ended. It was the place I discovered late last year that, yes, I can eat sandwiches again. And life -- and my dining choices -- have been expanding ever since.

Anyway, I had a True Opening in the Quaker sense of the words today over lunch. I recalled that, shortly more than a year ago, I was eating at the Pita Pit and fretting that I might die in a year or two. Or less. And today at lunch, I was eating at the Pita Pit and fretting that my piano lesson had not gone well.

Wow.

So, what hasn't changed is that I still fret about stuff from time to time.

It's just the subject matter that changes...

A Touch of Genuine Humanity

Deb and I visited my radiation doc a week or so ago. Just a routine visit: "How are things going?" kind of stuff. And the doc gave me yet another assurance that everything in my head/neck area looked and felt perfectly fine.

I took the occasion to ask him about these vision issues that I blogged about in "Adventures in Modern Medicine." I wondered if the radiation treatments from last year might be responsible. (This seemed a bit more likely to me, since the vision issues occur most often on my left side -- the side where the cancer had been; and therefore the side that received the most intense radiation dosages.)

He assured me that the amount of radiation used in my treatments was well below the level that the optic nerves can tolerate. Also, that the pinpoint accuracy of the radiation delivery system kept that radiation well away from my eyes. All of that, as you might expect, was good to hear.

At the end of the visit, he paused a moment and then said: "I have a number of head/neck cancer patients just now. And when I work with them, I think of you."

I was stunned, then deeply moved by this. It seemed so out-of-character for the person I thought he was.

Thinking back on the episode, I suppose I could have asked him why he thinks of me when working with other patients; but at the time, I was so touched by the intimacy of his comment that it didn't occur to me to do so.

I took it as meaning that I was (and still am) a human being for him -- and not just a collection of symptoms and charts and plans for therapy. That my treatments have been a success and that he celebrates this. Like me. And Deb. And you, dear reader.

Sometimes we forget this. That the doctors in our lives might know us as real human beings -- and care about us that way.

Aventures in Modern Medicine -- Chapter Eight

Or nine or six or something... I guess it depends on who's counting.

A week or two ago, I noticed that the number of "floaters" in my vision (that is, those little dark spots that show up and eventually drift out of view) seemed to have increased and that I was seeing bright flashes of light 'way off to the left in my field of view. Also, a light gray film was showing up and disappearing from time to time. Finally, I kept seeing a black "something" at the left edge of my vision that seemed to fly past me quickly. Like a bird or a bat. But there was never anything "real" to see when I turned my eyes to look directly at where the "something" had gone.

So I've added a ophthalmologist to my battery of medical specialists. Nice guy. Seems quite competent.

During my first visit, I got the obligatory drops that made my pupils dialate to the size of quarters, an impressive list of questions about my vision, and a thorough examination of the insides of my eyeballs. The eye doc dictated his findings to an assistant as he went through the process. (Never seen that before! Had no idea what he was talking about.)

Afterwards, the doc had me watch a DVD about floaters and a variety of retinal issues (which was interesting to watch through my blurry eyesight -- thanks to the aforementioned eyedrops!). He seemed to feel that I was quite smart in coming to him as soon as these symptoms showed up -- that they could be signs of something serious. Then he had me make an appointment for a week later. To see if there were any changes.

During this second visit (with more eyedrops, of course), the doc said he saw a small tear (as in dislocation rather than lachrymosity) in the retina of my left eye. Small and located well off to the side. But something that should be fixed before it got any larger.

Having watched the aforementioned DVD, I knew that the process involved tack welding the dislodged portion of the retina back in place with a laser. And I expected him to tell me to make an appointment to have the procedure done. But no! He was ready to do the deed then and there. And who was I to argue?

So I got moved to another examination room and received yet another type of eyedrop. And waited for some time (Who can tell time when waiting for the doctor in an examination room? Why haven't more playwrights done dramas and/or comedies about people stuck in a medical examination room? Samuel Beckett, where are you when we need you?) for the doc to show up.

He turned the lights way down low and put the most amazing contraption around his head. Looked something like a dressed-up version of that colander thingy from Back to the Future.

He told me that he would be hitting the area with twenty or so laser shots. In fact, it seemed like a lot more than that...

You do, of course need to keep your eyes wide open for this sort of thing. And for goodness sakes, keep looking at exactly the same spot on the ceiling that the doc says to look at!! If you move your eye and the laser shot hits someplace it wasn't supposed to...

The laser produces a bright green "image" when it hits. I think it announces the death of the rods and cones in the area that the laser hits, but I'm not sure about that.

Afterwards, my left eye didn't work at all for 5 or 10 minutes, but the doc said that was perfectly normal. I considered this an interesting use of the word "normal," but didn't say anything. When my eye returned to service, everything looked very purple. I guess the green sensors were overloaded and had decided to take a break. In 20 minutes, my vision was back to normal -- in the usual sense of the word "normal." Floaters and all.

In answering my questions about this procedure, the doc informed me that the torn retina probably had nothing to do with the symptoms that had brought me to his office, but that the two test procedures he had prescribed for me at the local hospital should shed some light on why these symptoms had shown up.

I had the first procedure today: a carotid ultrasound. The doc thinks the blood flow to my left eye may be inadequate or interrupted from time to time. And since the left side of my neck is the one that had the major surgery last year, that might make sense.

The other procedure happens on Tuesday morning. It's an echocardiogram. I hope to be able to explain what that means by Tuesday afternoon.

I feel caught between two very different places on all this. On one hand, I continue to feel that I'm getting excellent treatment from wonderfully competent medical personnel. On the other hand, I'm getting tired of my body producing new things from them to work on. I don't see that any of these issues is directly related to any others -- which is good news and bad news all at once. Which I think you can understand without explanation...

Oh yeah! Nearly forgot to mention! The doc says that there are two things I need to avoid doing for the next ten days to two weeks. He says "Don't lift anything heavy," and "Don't bend over." Because either of these activities would put additional pressure on the eyes and possibly dislodge the retinal fix. (Now, why would a juggler ever want to -- or have to -- bend over?)

So I try to take all of this in good humor, being deeply grateful for my fundamentally good health and great support from family, friends, medical professionals, and -- to be sure -- readers of this blog. Who by and large fit into one of the aforementioned categories.

I can see to write this. You can see to read this. There is much to be grateful for.