Clearing 1209 -- with a Buddhist overlay

I started writing this a month ago. Things have changed (i.e., the house featured in this posting has been emptied and sold), and I will blog about all that later. But before I do that, I wanted to document the following experience:

My two (remaining) brothers, sister, and I have been working pretty steadily for the last two months on our Dad's house -- getting it ready for sale. When we started working, it was pretty much completely furnished for a family of seven: five siblings and two parents. Two of those seven are no longer with us, and four of those seven had moved away, but the furnishings and mementos remained.

So Dad had been living alone at 1209 Tupelo Place (thus the title of this piece) for a number of years, turning aside repeated suggestions from us kids to move to an assisted living facility. Finally, his increasing physical fragility coupled with his deepening loneliness helped him see that moving was the only sensible thing to do. (He's currently in an assisted living facility just a few miles from 1209, where he is enjoying the restored health that comes from regular meals, taking his meds as prescribed, and being surrounded by friendly, caring human beings. He looks and sounds great. Thought you'd want to know that...)

He also now understands that none of the four of us wants to move into 1209, and that he can't move back himself. So the only thing to do is sell the place. Now, while 1209 wasn't Dad's first house, it is the place he's lived for over 50 years -- and the place where his kids grew, matured, and left to form their own families.

Bottom line here is that 1209 was chock-a-block with mementos of seven people: furniture, school awards and graduation diplomas, report cards, finished and never-quite-finished projects of all sorts, hardware and tools, letters, greeting cards, perfectly good but unwanted clothing, scouting and camping equipment, artwork and mirrors from the walls, kitchen and dining-room wares, sporting goods, piles of records (including 78 RPM's of swing-era musicians and classical performances), and photos. Oh lord, the photos! Their sheer number was astonishing. Many of them were pictures of ancestors that none of us recognized. Many of them were of us kids when we were ever-so-much younger. All of them were poignant. In fact, almost all the stuff was poignant.

And it all had to go. The furniture and much of the kitchen ware went to Goodwill. That was pretty easy. But so much of everything else -- maybe 98 percent -- simply needed to be thrown out. There's no room in any of our houses for holding on to that stuff.

But how to do it? And what to save and what to throw away?

Each of us had spent some time alone at 1209 trying to deal with that question. And it wasn't working. In part because each of us would pick up an item, stand over the "throw-it-out" bag, and think: "If sibling X found out I threw this away, he or she might never forgive me." And then put the item back down. Outside the "throw-it-out" bag. And there it stayed until the next sibling picked it back up again, went through the same mental routine, and put it back down. Still outside the "pick-it-up" bag.

But when two or three of us gathered together at the house, each of us would see a sibling toss out something that clearly had sentimental value. And that encouraged each of us to do the same. And so we managed to throw out considerable amounts of stuff -- albeit with a pang of conscience with almost every toss.

My sister was moved to hold items over the "throw-it-out" bag, thank it for being there and all that it had meant to us over the years, and then deposit it into the bag. My sister, as you might have guessed, holds a marvelous balance between spiritual depth and everyday common sense.

And watching and listening to her took me to the Buddhist education that I've been accumulating here and there over the last several years. In particular, the notions of compassion and non-attachment came to mind. Buddhist philosophy is based on compassion for all things -- animals and plants and minerals as well. So, one should care about everything in the world. But along with this idea is the notion that one should stay unattached to the events that occur therein.

And within the boundaries established by these two notions, is (it now seems) the proper way to clear out a house -- whether it's your house or someone else's: when you pick up that item, be grateful for the experiences that the item brings back to mind. And then throw the item out. Keep the memory if the item supports you in a positive place, but ditch the item itself. It has done its work, and now should move on to be and do something else.

More lessons from 1209 to come...

It's Really Nice...

...to be somebody's success story.

Not just contributing to his/her success story, not just representing her/his success story, but actually being the walking/talking success story. And it occurred to me yesterday that I am that for my medical team.

I had a "routine" visit with my radiation doc yesterday. Just a regular 3-month checkup. And it was, in truth, either a routine visit or an epiphany. As is so often the case, the difference lies not at all in what happened but in how one views what happened.

Okay, here comes the "routine" visit story:

Deb and I went to the doctor's office -- the place where all my radiation treatments took place -- and had a pleasant chat with one of the nurses who took good care of me; and then another chat with the doc himself. He probed my entire neck area and didn't find anything new or unusual, then he looked in my mouth, then he wished Deb and me a Merry Christmas and we shook hands and left. End of story.

Now the epiphany version:

To begin with, as we sat in the front-office waiting area, a lady came in, nodded "hello" to the receptionists, then walked through a door towards the back of the office area. No check-in or name identification. And I understood from her behavior that she had a radiation session scheduled to treat her cancer and there was no need to check in at the front desk. Because she had been there yesterday and the day before and the day before.

I knew this was so because that was my routine a year and a half ago. Every weekday for seven straight weeks. Right past the receptionist and through that same door. And with that recollection came a flood of memories: sitting in the back area waiting for your turn with the radiation machine. The magazines. The coffee machine (which my horribly sore mouth wouldn't let me use). The tray of cookies (ditto). The half-finished jigsaw puzzle on the side table. (Which always seemed to be more-or-less half finished. While waiting your turn in the radiation room, one's job is to find the next one or two fitting puzzle pieces and place it/them into the work done by all the other patients who had been waiting their turn for radiation treatment -- hours ago, days ago. And when the puzzle was almost finished on day X, you could be pretty sure that there would be a new puzzle -- totally disassembled -- on day X+1.)

And I remembered the feeling that this terrible thing that was about to happen to my body -- the treatment -- would, if I were lucky, save my life. So that the machine, after a week or two, became a friend and then a partner in the fight and then a means to salvation.

And then came the recollections of all the wonderful people who had pulled me through this ordeal: the nurses, the radiation technicians, the doctor himself... and my wonderful wife. They were strong for me when I could not be strong for myself.

And just as tears of gratitude and recalled hardship started to well up, Joan -- one of the two nurses primarily responsible for my care back then -- came through a doorway and called my name. She seemed genuinely pleased to see me. And it was -- as it has been for so many months now -- a genuine treat and a blessing to see her.

We got through the business of being weighed and moved on to "How are you feeling?" and "Anything new or unusual going on?" And Deb and I racked our brains trying to come up with something to report. Then Joan reminded us that having nothing to report was a really good thing.

Oh, that's right...

Then Joan told me I looked great, that she wished us a Merry Christmas, and that the doctor would be in shortly. And shortly thereafter, the doc showed up.

It seems every time we visit with this guy, he seems more and more genuinely pleased to see us. I think he likes the fact that I continue to be healthy -- and that he can take some major credit for this. Well that and the fact that I put on a juggling show for him and his staff.

Or maybe he just likes us. Hmmm...

Anyway, after confirming that there were no new symptoms to discuss, his first question to me was about my saliva production. (Which makes sense -- the sort of question a good doctor would ask -- since it was the radiation treatments that permanently disabled the large parotid salivary gland on the left side of my face.) I started to tell him that I normally carry a water bottle everywhere, but had forgotten it this morning. He gently interrupted me to point out that this meant that it wasn't absolutely necessary for me to go everywhere with a bottle of water. (Something which has developed over the last several months. The bottle is reassuring to have, but it's not the necessity I felt it to be six months ago.) He seemed both pleased and relieved: okay, Randy's salivary production is significant if not totally returned to normal. And that's as much as we can expect.

He asked if I was taking good care of my teeth. (Because after my radiation treatments, loss of any tooth will likely mean all the teeth on that row -- that is, upper or lower jaw -- would sooner or later have to be pulled. I don't quite understand this, but my medical team all seem to agree that this is the case.) So I rattled off what I'm doing to protect my teeth and he seemed satisfied.

He felt all around my neck -- left side and right side both thoroughly -- and told me he couldn't find anything new or unusual. Then suggested that I should be probing my neck area the same way fairly frequently. For the same reason that women should perform self examinations on their breasts: get to know "normal" feels like everywhere in the area, so that if anything new shows up, I will know about it quickly. (Don't you just love common sense when you hear it?)

We were running out of things to talk about...

Working to hold up my end of the conversation, I mentioned that I was anxious about almost any illness or unusual event concerning my body. As in: "Good grief, I've got a hangnail. OMG, maybe it's cancerous!"

And the doc got quite animated and said, "That's perfectly natural! You couldn't respond any other way. It will simply take time for those feelings to go away." Then he related the story of having his car rear-ended in an accident and how, for months thereafter, he looked in his rear-view mirror every time he put on the brakes. Once the totally unexpected happens to you, you get anxious about it happening again. Cancer. Car collisions. Whatever.

It was just so nice of him to share that. I told him that, while I knew intellectually that was the case, it made a huge difference to me to hear it from him. So I thanked him.

Then I told him that my chemo doc had said that he had worked very hard to cure me from this aggressive form of cancer and that, if I were to die from a blood clot, he would be angry with me. I thought that might bring a smile, but in fact the doc just looked more earnest and said that sort of thing -- a patient dying from some unrelated cause shortly after being treated was not all that uncommon. And he related (yet another) story about such a circumstance that occurred early in his medical practice. And I could see on his face that the memory of the patient, his treatment, and his untimely demise was still quite fresh for him. And painful.

After some silence, he looked at my charts one more time and mentioned that I had had an MRI back in August which had looked perfectly normal. And that he didn't see any reason to schedule another scan any time soon.

The strongest evidence to date that he feels I'm truly cured. For the long term.

Finally, he sat back in his chair, looked at me -- or actually beamed at me -- and declared me to be "the picture of perfect health."

As he stood up, he wished the two of us Merry Christmas. And would I please schedule another visit in four months. (Bumped up from the previous schedule of three months between visits.)

Then he shook our hands. Both of us. Deb and me. And then he shook them again.

Lately it seems I'm never that far away from tears. But it's always tears of joy. Tears of gratitude. Damn but it's good to be alive!

No Test Results for a While...

Well, it seems there was a SNAFU in the testing procedure I mentioned in my previous posting. Out of the battery of tests that should have been performed on my blood -- looking for causes of my body's tendency to clot -- several of them were not performed. And I couldn't find out why.

I guess I'm not surprised. The lady who took the blood samples seemed awfully grumpy about something or other -- and distracted. And it seems she forgot to get some paperwork done concerning the genetic testing. That's my guess, since she didn't ask me to fill out and sign anything; but yesterday, when another lady at the same center took another sample, she did need paperwork from me. (I think it was some kind of permission slip, which makes sense in light of all the controversy over the privacy of test results.)

In any case, it will be another two weeks or so before the results are back. Just in time for Christmas. Maybe that's an omen...

Anyway, life is pretty fine. I feel healthy and well taken care of.

Can't ask for much more than that.

Kind thoughts, please...

Well, this coming Tuesday may be a Big Discovery Day for me. As reported in the October posting, "Testing #3 -- A New Journey," I've had a series of blood tests being analyzed for several weeks. Collectively, they're either called "hyper-coag" or "hypo-coag," but I think it's the first of the two. Because the problem being addressed is my body's tendency to form blood clots when it's not appropriate to do so.

And Tuesday morning, we've got a meeting with my chemo/hemo doc -- I think/hope to discuss the results. Possible test results and prognosis include:

-- "The tests show completely normal blood chemistry and the genetic testing shows no predisposition for clots. It looks like it took a while for your body to re-adjust after the chemo treatments, but you can now continue your life from here on in without blood thinners and minimal concern for additional clotting." Which would mean I could get on a plane with no particular concern or consider driving to Alberta again and doing dino work next summer. Or...

-- "It looks like the chemo treatments have triggered something that will likely recur from time to time -- unless you put more rutabagas in your diet. (Or kale or kumquats or whatever...) In which case you should be fine." Which would be a minor inconvenience but a happy outcome. Or...

-- "The tests indicate you should be on blood thinners for the rest of your life." Either for hemotological reasons or genetic markers that were triggered by the chemo treatments. In which case, (especially if it's genetic) I should probably tell all my relatives that blood clots are a possibility in their lives as well, and here's what to look out for. Or...

-- Something else.

I can't think of what "Something else" might be, but past experience tells me that the unexpected is to be expected.

And so, dear friends, I would ask you to "hold me in the light" on Tuesday morning. And I will report on what's what as soon as I know.

Thank you for being here.

Another Green Light

Last Monday, Deb and I visited my Ear/Nose/Throat doc for a routine visit. And "routine" is a good word for the occasion:

As usual, he did a very thorough physical examination of my neck, cheek, tongue and throat. Probing and prodding everywhere. And as has always been the case for these visits, he couldn't find any new bumps anywhere.

This is getting to be so routine that he almost forgot to probe the inside of my cheek. Which is quite close to where the initial tumor had been located. He chastised himself lightly: "I looked all over the outside of the cheek but almost didn't look at all on the inside." Or words to that effect.

He wanted to know if I felt tired a lot recently and I told him no, but that my stamina wasn't anywhere near where it had been before the treatments started. He suggested that my thyroid gland might be acting up -- which wouldn't be that unusual for someone who had received the treatments that I had. He said that the hyper-coag work-up that's currently being analyzed (the results of which should be available in a couple of weeks) might include testing for thyroid conditions -- and if it didn't, he would order such testing.

And that thyroid business, coupled with some discussion of my blood clotting issues, was/were the main topic(s) for the visit. The possibility of cancer recurrence was almost an afterthought.

So that's pretty good news, eh? I certainly thought so.

Although something inside of me keeps droning on and on about how the cancer could re-occur at any moment. And just like that the blood clotting and possible thyroid issues pale in significance. But then, I remember that -- as previously posted -- life is pretty darn good right now, and that's all I need to know. And that tomorrow is not guaranteed. For any of us.

Which brings me back to a upwelling feeling of gratitude. For my health. For my spouse. For my excellent medical team. For the chance to "talk" to all of you.

And that's pretty good news too.

Oh, That's Why!!

Until just the other day, I've been puzzled why I don't find time to keep up this blog the way I used to. I mean, I used to post something almost every day. But lately...

Just yesterday though, I finally asked myself the right question. Which was: "Why can't I find time to update the blog?" And bingo, there was the answer.

I can't find time to keep it up because I've plugged back in to almost everything I was doing before my treatments started last year. Plus some new stuff -- like music lessons and the practice time that is necessitated by the lessons.

During treatment, I did practically nothing except eat, sleep, read, and have Deb haul me around to doctors' appointments. And compose stuff for the blog. But now:

-- I'm working out at my health club again.

-- I've got half a dozen projects going in the basement.

-- I'm doing yardwork again.

-- I'm running practice sessions for the Turks Head Jugglers again.

-- I'm performing again.

-- I'm working to get my Dad's house in Baltimore ready for sale.

-- I'm participating actively in my Quaker Meeting and its School again.

-- I'm engaged in practice with the local Buddhist Sangha again.

-- I'm logging some kayaking time again.

-- I'm golfing on a semi-regular basis.

... and on and on.

It was deeply therapeutic during my treatments to sit at the computer for an hour or two in the morning and compose a new posting for the blog. I'm grateful for the experience -- and, of course, your reading and commenting on what I wrote.

But now I just seem too busy with things to tell you about things.

I'm reclaiming me. And it is good.

Testing #3 -- A New Journey

Well dear friends, I've started on Step 3 of the program described in the "Testing 1/2/3" posting earlier this month:

Yesterday, my chemo doc (who is also my blood chemistry doc) took me off Coumadin -- my blood thinning medication -- in preparation for in-depth blood testing to take place in roughly 10 days. He was very good about the decision, giving Deb and me a chance to continue on the meds for another month or so if either of us felt it would be a good idea. (Yes, he specifically asked "Mrs. Lyons" if she felt okay with the program!) Neither of us could figure out a reason why we should wait, so we agreed this was the right path to follow.

(I should mention here that the recent sonograms on my legs showed some residual clotting on my right leg -- the original clot -- but complete clearing of the left leg -- the clot that showed up in April of this year. Despite the residue from the first clot, testing also showed unrestricted blood flow in both legs. Yay!)

So the Coumadin has done its job of keeping new clots from forming, but it has to stop now to allow the blood to regain its normal chemistry.

So here's what's at stake: if the tests come back with good results, I may be off blood thinners forever -- or until another clot shows up. (Another clot at any time would mean that I would be on blood thinners for the rest of my life, no "if's," "and's." or "but's.")

And good test results would be A Very Good Thing, since there are hazards associated with being on blood thinners. Like any serious bleeding from an accident or whatever would be difficult to stop. And bleeding into an "internal cavity" like my stomach or lungs would be even worse than bad. (If it's blood thinners for the duration, I guess I get one of those Medic Alert thingys to wear...)

And if the tests come back with "uh-oh" results -- as you've probably guessed -- I'm back on blood thinners forever anyway.

So it's a big deal.

Deb and I were surprised to hear that the results of the tests wouldn't be available for four to six weeks. We're used to getting PT/INR test results in a couple of hours... But rest assured good people, that I'll post the results as soon as I can.

Late in the session, my doc suggested I continue living for a while, as there are some blood thinning meds in the drug pipeline that should be much easier to live with that Coumadin. Hard to argue with that, I guess...

And he ended the session by admonishing me thusly, saying: "Randy, I want you to know that I've worked very hard to get you through your cancer treatments and keep you alive. And if you were to die from a pulmonary embolism (i.e., a blood clot that breaks loose and hits the lungs, heart, or brain) and un-do all my efforts, I will be very upset with you! Very upset!"

And he sounded like he meant it.

Thank you for being with me on this journey. Sometimes, when it feels a little lonely in here, I think of you and all the support you've given me. And I feel strongly that I would not be doing this well without you and your thoughts and prayers and encouraging words.

And I'm sure that my chemo doc would thank you as well if he knew how much you've helped to keep me around. After all, he's worked so hard...

This Year's Skunk

Last year was the first year that we knew we had a skunk. We would see it in our back yard after dark, prowling across the lawn and in around the rose bushes.

(You may want to visit here: http://en.wikipedia.org/wiki/Skunk before continuing. Among other things, there's a picture there of a baby skunk that you really shouldn't miss.)

My first encounter with it was when I felt called to go out into the back yard. I was walking through the house, from some now-forgotten Point A to some equally forgotten Point B for some reason I forget when I "heard a voice" telling me: "You need to go out into the back yard. Right now!" So I did. And there was the skunk -- fortunately, at a distance that was comfortable enough for both of us.

The skunk looked at me an began to twitch its tail, as if to say: "Hey, I'm armed and I know how to use this thing." I decided not to move and the skunk seemed to approve of my decision.

The coloration on the critter was somewhat deceiving: it was almost completely white from head to tail, all over its back and down to about its mid-line. Then it was coal black from there on down. I first thought it was a very fluffy cat, but the eloquent twitching of that ever-so-elegant tail was unmistakable. Even for a novice skunk spotter like me.

So we saw the skunk three or four times that year -- usually from inside the house. We have a floodlight over the back yard so we had a good clear view with minimal chance of interfering with the skunk's prowling. But on one occasion, Deb was sitting on the front porch early in the morning and the skunk walked past. On its way home, one might presume...

Anyway, the patterning on this year's skunk is quite different. He (or she) has a jaunty pair of stripes that start at the head and quickly part to the sides of the animal, terminating just in front of her/his back legs. Look more like racing stripes than anything else I can think of.

And we've seen this year's skunk much more often. He/she will stay in the back yard for thirty minutes or so, digging smallish holes in the lawn probably looking for worms or grubs or both. The holes are inconsequential and the avidity with which the animal hunts its dinner is a great deal of fun to watch. Sometimes, she/he jumps up slightly and pounces down on his/her prey.

So, have we had skunks in the back yard for years and years and just never noticed? Can't say.

Why does the skunk revisit us so often? Is there something about our turf that produces particularly tasty and abundant food? Dunno.

Does the skunk live nearby? Maybe.

Are we pleased to have such a visitor? Absolutely!

We've never noticed a skunk smell, so she/he seems to go about his/her business with minimal interference from cats, dogs, raccoons or other potential annoyances.

Deb and I are in the habit of giving names to things like flowers, birds, and other residents of God's kingdom, and are probably going to call the skunk "Francis" or "Frances" since we don't know the animal's gender, won't be able to find out easily, and will seldom if ever write out the name again. So the name works for an oral reference to either a boy or a girl skunk.

Now, Deb and I have taken some long trips to witness the wonders of nature, including the Galapagos and Costa Rica. And some not-so-long trips, including Cape May and Conowingo. And we have six or eight bird feeders set out to attract birds to us. But the skunks are the first mammals ever to come to 419 W. Union Street to visit us. (Other than the ubiquitous squirrels, but they don't count. And bunnies, which do count, but not nearly as much as skunks...) And the skunks do this totally on their own volition.

And we couldn't be more pleased.

Testing 1 / 2 / 3

This coming Thursday, I begin a series of tests aimed at determining how my blood clot issues will be handled -- quite possibly for the rest of my life. I'm pretty excited. In an anxious kind of way...

Testing #1: On Thursday, I will get a battery of blood tests that I've had before. Names for these tests include ONCOP/CP304062, CBC with dif and pit, and PT/INR. (Please don't ask: I don't know what any of that means.) But the idea is to get a comprehensive snapshot of my current blood chemistry.

(Hmmm... is that possible? A "comprehensive snapshot"? Well I think -- I hope -- you get the idea.) .

This is in preparation for "Testing #3." Please read on.

Testing #2: This also takes place on Thursday. It will be sonograms of both my right and left lower legs. These are the places where the serious blood clots, (AKA "deep vein thromboses," AKA "DVT's") were located earlier. My chemo/hematology doc wants some "baseline data" on the status of the clots: Are either or both of them still there? Or are they totally dissolved? Could either potentially re-form a blockage of a major vein (which, in case you missed this point, would be life-threatening)?

For the last eight or ten months or so, people have been asking me how this clot issue is coming along: am I healed yet? And I'm deeply grateful for their interest, but I never have a very satisfying answer to give them: I feel fine and have a "green light" from my doc to work out in the gym -- as long as I avoid lifting heavy weights. But "feeling fine" and "being healed/cured" are, of course, quite different things. For example, he doesn't like my driving to Meadville, which is a six-hour trip if you drive straight through. He doesn't like it even if I stop every two hours and walk around for a half hour or so.

The idea is that, if I encounter future clotting difficulties, the dual sonograms done on Thursday will allow docs to distinguish between brand new clots and re-formation of old ones.

This, too, is in preparation for "Testing #3." Please read on.

Testing #3: The final step in the plan looks like this: With all this new background data available, my doc will take me off blood thinners for a week or so in preparation for some in-depth blood chemistry testing (whose alphabet-soup names I don't know...). These new tests -- which will include genetic testing -- will be will attempt to determine the underlying causes of the clotting.

I mean, I lived the first sixty-odd years of my life without any concern about blood clots. And the notion of driving four or five days straight to Alberta (which is due north of Montana) was not only conceivable but perfectly do-able. I know this because I did it three times. But now, I have concerns about getting on an airplane for a two-hour flight. (The two hours in the air should not represent a problem, but if the plane is held on the tarmac for two additional hours or more, clotting becomes a very real possibility.)

At this point -- without this comprehensive testing -- my docs can't tell me what's okay to do and what's not. What's safe and what isn't.

One possible outcome of Testing #3 is a simple conclusion like, "No wonder you've had clots. You're not eating enough rutabagas." Or, "Just steer clear of Cheetos and you'll be fine." And wouldn't either of those be a wonderful thing to hear?

Another outcome might be, "Well, we've uncovered a genetic basis for your clotting. And the chemo treatments you had last year kicked the predilection for clotting into actual clotting. Tough on you. Stay on blood thinners forever and try to stay swathed in a thick cotton wrapping for the rest of your life." And wouldn't that be a bummer?

So this is shaping up to be one of those proverbial forks in the road that determine my activities for the forseeable future:

-- can I risk getting on a plane for a long trip? (If and when I can fly again, Deb and I have some wonderful plans!)

-- will I ever be able to go dinosaur hunting in Alberta again? (Would it be okay to drive again? Fly again? Hike the ridges and arroyos with the risk of falling and getting badly dinged up?)

-- is something as simple-but-wonderful as unicycling actually dangerous for me?

And your thoughts and prayers are hereby requested, as always, gratefully acknowledged.

Stay well.

"Can't Feel a Thing"

Yup.

That's what my radiation doc said today after feeling all over the head and neck area that he treated last year. No new bumps, lumps or other unusual features.

Each doc on my medical team gives me this kind of physical exam on every visit. And each one goes about it in a different way. One guy starts over here and probes this way, the next starts over there and probes that way.

For the last several months, I've been getting this kind of exam every three or four weeks, it seems. (Today with my radiation doc. Last week with my abdominal surgeon. A couple of weeks before that with my chemo doc. Two weeks before that with my Ear/Nose/Throat doc.)

But the important thing is that they all come to the same conclusion: I'm fine.

And the fact that the probing starts, proceeds, and ends a different way for each doc and each visit is reassuring. Inasmuch as they all come up with the same result.

Don't ya think?

2010: A Summer Summary

(I started this posting weeks ago, and it's taken me all this time to get back to it...)

Every now and then, I think about how this summer has gone for me in comparison to last year's summer. Back then (as you may recall), I was in the middle of my treatments for cancer. My major surgery had been completed some time before and the incisions had healed, but the radiation treatments were a daily event -- except for weekends -- and the chemotherapy sessions were happening every couple of weeks. I was quite weak, but in retrospect, I wasn't really aware of how diminished I really was.

So I thought I would list and describe how things have changed:

Juggling -- Turks Head Jugglers: You may recall that last summer, I simply abandoned the club for several months. I felt that it would either continue to meet twice a week (thanks to the efforts of a small but dedicated handful of long-time members) or it wouldn't, but I was not prepared to help in any significant way. Well, the club continued to meet regularly without me and we actually picked up a couple of new members along the way.

This summer, we experienced our typical summer slow season, where practice sessions might only have three or four people in attendance. But things have picked up recently, and it's not unusual to have nine or ten jugglers in attendance.

The THJ has been extremely important to me, and I consider its existence and continued success to be one of the major achievements of my life. Over the last twelve or so years, close friendships have formed during these sessions, members exceeded their own expectations on a regular basis, and I've learned and laughed a lot.

And the fact that the club had enough inertia to survive my illness has been deeply gratifying. And I have once again picked up my responsibilities to open the gym and assure that things run smoothly as often as I can. And when I can't, this same small handful of long-term members is there to keep things chugging along. God bless 'em!

Juggling -- performing: Every year (except 2009), I've mailed out roughly 300 sets of flyers for my dinosaur and juggling programs with cover letters explaining what's new and how my shows can support their programs. These get sent out to retirement facilities, libraries, schools, etc.

But last year, I felt I could not to send them out -- in large part because it wasn't at all certain that I would be able to pick up the business once my treatments were done. Maybe not for a while afterwards, maybe never.

But I feel great, and business has almost returned to normal despite the lack of advertising. I've done over 30 shows so far this year, and the fall season promises to be busy.

(Last summer, I had to cancel a number of shows as the chemo and radiation took their toll on my abilities to perform. Late last year, when it became apparent that my health would allow me to resume my career, I sent letters to the facilities where I had to cancel a performance. In the letter, I offered to put on a show for them at no charge. Most folks at these facilities called me to say, "Yes, of course we want you to come and perform -- and of course we will pay you."

Unicycling: Riding around on one wheel is kind of a natural progression from juggling. Both appear to the unitiated to be impossible, but there is a step-by-step approach to either one that takes you fairly quickly to competence. And when you're there, you look back at the process with some puzzlement: Gee, was it really that easy?

Anyway, the unicycles (the Turks Heads now have three of them) sat in my basement all last year, and I couldn't consider holding a "learn-to-unicycle" session or even take one out for a quick spin. And this year, I was reluctant for the longest time to consider climbing back up on one because I've been on blood thinners -- and any serious fall could become a major bleeding event.

But in June or July, I recalled that I hadn't had a serious fall off a unicycle in years and that my balance and coordination were close to their pre-treatment levels. And that I had a life to live and could decide for myself what was worth risking. And then getting back up became a simple decision. And I've been riding ever since.

And I've introduced three folks this summer into the glorious magic feeling of riding one wheel. Three really nice folks. And they all did well. And I'm pleased for them. And pleased with me about the entire enterprise.

Golf: I think I blogged this story already, but just in case, the following interaction happened between me and my E/N/T doctor. He had just finished describing what he planned to do during the radical neck dissection -- the big operation on my neck. Things to be removed during the operation included the lump on the side of my neck that got the whole process started, my left sternocleidomastoid muscle (which is the big ropey-looking muscle on the side of the neck), one of my (four) jugular veins, and a considerable number of lymph nodes for examination for cancerous cells.

After the description, the doc asked me: "So, do you have any questions?"

And, in an effort to establish an air of nonchalance, I asked the doc: "Will the operation affect my golf game?"

He thought for a moment, then asked: "You're right-handed?"

I said yes.

He thought for another moment and then said, "Nah, you should be fine."

What I loved about this back-and-forth was that he clearly thought about the issue. He didn't just blow the question off with a "Oh yeah, not a problem." And that slight delay in his response meant everything to me. That is to say: Yes, he's a golfer as well. Yes, he's just hit an imaginary golf ball to check his own swing (without moving, of course). And yes, he's tracking with me. God bless him.

And he was right. My golf swing -- which I had been working on pretty steadily for a couple of years -- was unaffected. And now that my strength is pretty much back to pre-treatment levels, I'm playing every other week or so with my ex-roommate from college. A fellow I like and admire tremendously. We haven't been in contact for over 15 years, but the golf has brought us together again. Much to our mutual benefit.

Personal Trainer: I am firmly convinced that I came through last year's treatments as well as I did because my overall health was good and my stamina and strength were markedly higher than the average 60-year-old thanks to my work at my health club with a personal trainer.

(At the risk of sounding preachy, please let me encourage you, dear reader, to get healthy and stay that way. Diet. Exercise. Enough rest. Get the stress out of your life. Because you never know when you may need to call on every ounce of energy you have available. Trust me on this one...)

And I'm back at the gym and working with a trainer again. And he's done wonders in helping me regain my strength and stamina. I'm not at pre-treatment levels on either of these things -- and may never get back there again. But I think I'm still way ahead of the conditioning of the average 60-year-old. And it feels great.

Doctors' Visits: These are still a regular feature of my life. My radiation guy. My E/N/T guy. My chemo guy. My tummy-surgeon guy. Every two months, or three months or so. And every time I visit any one of them, they carefully probe the left side of my neck, looking for any indication that the cancer has returned.

And before each visit, I need to pull myself away from the fear that this time, the doc will find something he doesn't like. And maybe I need a new CT scan or MRI or something. In a hurry.

And there's some legitimacy in the fear, because the list of my treatment options is much shorter now -- after the surgery, the chemo, the radiation. And the eventual outcome will be

But I work to bring myself into the present moment. I know there's nothing else I could have done up to now to avoid the illness in the first place or to enhance my recovery. And I know that worry about the next doctor visit will not decrease the chances that the illness will return. And that seeing these wonderful docs is the best thing I can do for the "right now" moment that we live in.

And the fear moves away from me.

(There's lots more to post here, but duty calls me elsewhere. Watch this space -- please -- for more stuff.)

House stuff -- I fell 'way behind in this! We started using a lawn care service last summer, because there was no way that I could manage our mower and Deb had a long list of other things more imporant. But the service has been so good and the price so reasonable, we've just decided to keep the good folks employed.

Normally, I take our windows out of their frames and give them a good cleaning once a year. Needless to say, this practice also came to a halt last summer. But I've just finished giving all of them a good wash -- and it's great to see out the windows clearly again.

And then, there's the half-dozen other projects that fell by the wayside. Where they reside to this very day...

Medications -- I find it hard to believe I've been thorough so many different meds. Pain meds (all of which seem to have worked superbly well!), anti-depressants (prescribed just in case), indigestion meds (several types), anti-swelling meds (ditto), creams and lotions for the surgery site, and two types of blood thinner: Lovenox (a self-injection for immediate anti-coagulation therapy) and Coumadin (a pill for long-term anti-coag). There are collections of empty pill bottles here and there all over the house it seems.

During the summer, I was down to a mouthwash for anti-swelling of tongue, cheeks, and throat; a pill to facilitate salivation, another as a digestive aid, and Coumadin.

The doc has just taken me off Coumadin (as of 10/18/10), and I've stopped taking the other two pills on my own recognizance to see if they're really needed any more. So at the moment, I'm down to the mouthwash, which does seem to be necessary.

Pretty cool...

Sleep habits -- I cannot tell you what a pleasure it was, night after night, to fall into bed during the summer of 2009. To sleep, perchance to dream. And the naps! Ah, the naps!! There wasn't much else going on in my life at that time that had been a part of my life before my diagnosis. But I could still zonk out with the best of them.

Nowadays, I'm waking up fairly early -- often before 5:30 -- without benefit of an alarm clock. And the world is a wonderful place at that time of day. The potential of what that day might hold in store for me is unlimited. And the feeling of gratitude overcomes me once more...

Eating --

Boating --

Family stuff --

My Declaration of Freedom --

My reading --

My religious practice --

My reading list --

Voice changes --

Keyboard lessons --

Who I Am by Who I Am Not...

At the retreat mentioned in the previous posting, the head of our Healing School contrasted two approaches to finding God.

She told us that Kashmir Shaivism, a branch of Hindu philosophy, identifies God by what God isn't. God is not the earth, God is not the sky, God is not this or that. And once you have eliminated everything, what remains is God. (I'm pretty sure I've got that right...) For more information, visit: http://en.wikipedia.org/wiki/Kashmir_Shaivism

It intrigues me that this approach to finding something by eliminating everything is reminiscent of the concept of "vacuum energy," which is what you have left when you've removed all matter from space. For more information, visit: http://en.wikipedia.org/wiki/Vacuum_energy

So what we have here is Kashmir Shaivism, an ancient religious concept; and vacuum energy, an idea developed by 20th-century quantum physicists. But the concepts seem to overlap heavily...

(Coincidentally, a manifestation of vacuum energy is called the "Casimir Effect" -- but enough of idle musings...)

My point is that different people in considerably different times and pursuing considerably different disciplines have used this "eliminate everything" approach to find information or guidance or wisdom or something else useful to them.

And it then occurred to me that my (informal but lengthy) study of the Tao Teh Ching indicates a strong flavor of the same approach to finding Truth: eliminate everything you can to find the deepest truth.

ANyway, something clicked at the retreat and I found myself writing the following:
-- you are not your ego!
-- you are not your mind!
-- you are not your emotions!
-- you are not your fears!
-- you are not your desires!
-- you are not who you think you are!
-- you are not who you want yourself to be!
-- you are not who you want others to think you are!

And I'm coming to believe that, in the search for your deepest and most-true/most-real Self, you are not the collection of all of these things or any subset of these things.

Perhaps your True Self is what you have left when you have abandoned all of these things. This resonates with the Buddhist concept of non-attachment. And it is the fundamental position of (Japanese) Zen and (Chinese) Chan. Perhaps.

So, does all of this qualify as idle musings? New openings?

Can anything be more important than searching for your True Self?

Dunno...

Ego Warnings

A recent posting described a retreat arranged by my healing school -- the one I went to but had to leave early. But in the short time I was there, I had several revelations that I wanted to share with you. One of them had to do with ego:

When folks at my school -- and similar disciplines -- use the word "ego," it has a different meaning from what you may recall from your Psychology 101 course. In the healing school context, the ego is that part of your psyche that makes you think you're the Center of the Universe and everything and everyone around you should conform to your view of things and agree with it that you are justified in everything you do and say. The ego, then, isolates you from a deeper understanding of yourself, the people around you, and the world at large. The ego can make you very small, very hard, very brittle. While it seems to want to protect you from danger or pain, the truth is that it creates barriers between your self and love. Love of self, love of others, love of the world around you, love of God. And it can do so with all the creativity and imagination you have. Yup, it's that sneaky...

Thus, a major objective of many Eastern religious disciplines is the destruction of the ego.

Well, if it's that sneaky, how do you know when your ego is at work? When is it driving your bus rather than your True Self -- whose basic nature is love and acceptance?

Ah, glad you asked. 'Cause that was the revelation I wanted to share. During the short time I was at the retreat, I wrote out the following list:

I know my ego is driving the bus...
-- whenever I'm angry.
-- whenever I feel separated.
-- whenever I'm explaining myself to myself.
-- whenever I'm explaining myself to other people.
-- whenever I'm feeling recriminations.
-- whenever I ignore my internal Red Light.
-- whenever I'm feeling judgmental.
-- whenever I want to hang onto my resentment.
-- whenever I'm disappointed.

(Additions to the list are warmly invited!)

A Declaration of Freedom

So, my last posting talked about expanding my horizons. Living outside my self-imposed limits. Taking a few more (well-chosen) chances.

And I started that process yesterday:

I hadn't touched my unicycle since before my diagnosis last year. And during most of my treatment, I simply didn't have the energy to ride. And by the time my radiation and chemo treatments were done, I was on blood thinners and concerned that I might fall off my uni and start bleeding uncontrollably. Maybe "frightened" is a better word than "concerned."

And I missed riding. And I especially missed the early Saturday morning riding sessions that members of the Turks Head Jugglers had held for years. (Not that often, mind you, but maybe four or five times a year...) And I knew that these sessions would not start up again unless I took charge and scheduled them.

So last Friday, I sent an e-mail off to those members of the THJ who might be interested in unicycling: please join me at our regular riding place tomorrow morning. Understandably (as everyone had less than 24 hours' notice), no one showed up.

That is, no one but me. Which was fine. I had three unicycles with me -- just in case -- but didn't expect any company. Which was a Good Thing Not To Expect, since I didn't have any company.

But I rode! And I rode well!

As I rode, I thought to myself: "I haven't fallen off a unicycle and bled seriously for years, so why was I so concerned about this?" And it dawned on me that I had been letting fear dictate what I could and could not do. Irrational fear. Incapacitating fear.

For the last 6 months and more, I told myself that I could resume riding when my body was totally healed and off the blood thinners. But it has recently occurred to me that that day may never come. And if I waited for that day of total healing, someone would likely inherit my unicycle after I die. And it could wind up hanging in someone's garage and never get used again.

As I rode, all the little tricks you need to stay aloft on a uni came back to me one-by-one: Keep your posture perfectly upright. Keep your weight on the seat, not on the pedals. Turn by looking in the direction you want the uni to go. Trust your body to make all the necessary adjustments to keep you upright and moving. Stop by letting your body fall slightly forward as you grab the back of the seat. (This will allow you to remain standing upright with the uni safely in hand -- keeping it from bouncing off the pavement.) Relax as you ride.

And as I rode, I felt unshackled.

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.

Four Years' Worth...

I've had weekend-long sessions at my healing school (which I still would like to blog about some time...) in Meadville (which is in the upper-left-hand corner of Pennsylvania, as opposed to the lower-right corner where Deb and I live) for the last four years. Roughly six or eight sessions a year.

I graduated from that school last weekend. It was a marvelous experience that touched all participants quite deeply. And I want to blog about that as well. (I will be attending the school for at least one more year as a graduate. It's all rather complicated...) But that's not what I want to write about this morning. Not exactly, anyway.

When I go to the school, I make it a habit to take a backpack/satchel gizmo with me. I picked it up at an annual convention of the Society of Vertebrate Paleontology. Nice logo on the pack, and wonderfully useful. I keep several notebooks in it, along with papers relevant to the school, plus pens, a book of Sudoku puzzles, my checkbook and my datebook/calendar.

And when I get to the school, I empty my pockets into the pack: my wallet, my cell phone, my car keys, and whatever coins I've brought with me. When the school session starts, it's important to me (for reasons I don't fully understand) to have empty pockets.

When I get ready to leave the school, I retrieve my wallet, phone, and car keys -- but I never retrieve the coins. Probably because I'd have to pull everything else out of the pack to get to them, since they're all lying at the bottom.

Anyway, yesterday, I decided to do just that: pull all the paper out of the pack and retrieve the quarters, dimes, nickels and pennies that have accumulated there. I'm sure there was $20 worth down there, and it might well have been $30. It didn't seem to be necessary to count it...

I spent a moment looking down at the money before I started hauling it out, thinking about how much weight the coins had added to the pack through the years. And the phrase came to mind: "Four years' worth of change."

And then I thought about how deeply and in how many ways the school has helped me open and redirect my life over that time. And I thought about last year's illness and its attendant treatments. And how much that experience has changed me. And how my marriage has become a stronger and deeper experience. And how my golf game has improved. And how much learning and playing my electronic keyboard has meant to me. And on and on...

And then I thought: "Yup, four years' worth of change. That's about right."

What (I Think) You Should Know about Blood Clots

I guess it's not surprising that so many people know so little about blood clots. I certainly didn't until my body started producing them. Those two deep-vein-thrombosis (DVT) clots and the recent death of my nephew Jon prompt me to suggest a few things I think you should know about blood clots you may develop. (Folks have asked me about this...)

First of all, please understand that almost anyone, it seems, can develop a blood clot. Your age doesn't seem to matter (Jon was 24 and I'm 63). Your physical size and your physical condition don't seem to matter. And your gender doesn't seem to matter either. There may be a genetic predisposition to clotting, but that won't guarantee that you will or won't develop clots somewhere in your lifetime.

So, there are many causes of blood clots, as described in this article: http://www.insideheart.com/causes-of-blood-clots.html (with thanks to Pooja for posting this link back in late April!) But in addition, I'd like to address the issues of "How do you know if you've got one?" and "What do you do if you think you do have one?"

"How do you know?"
I've been thinking about the experiences that Jon and I shared, based on what I've learned from Jon's dad. I will grant you that a patient sample size of two is quite small and unscientific, but it's the best I can do. If you've got a clearer idea, please feel free to post that information!!

Jon and I both experienced pain -- me in my calf and Jon in his chest. The pain lasted for several days, getting somewhat stronger or weaker from time to time. The thing we both had in common here was we couldn't think of any reason for the pain. I hadn't been playing Rugby, doing wind sprints, or doing anything other unusual strenuous activity. The pain felt very much like a muscle pull, and Jon's dad seemed to be saying that was what Jon felt as well. In addition, the normal stretching or other palliative activities that might have alleviated the pain weren't working.

(Swelling in the affected area is noted in the literature as a symptom, but I didn't experience much of that...)

So Jon and I each had several days' notice that there was a problem. Fortunately for me, the staff at my radiation-therapy doctor's office picked up immediately on the symptom (which they noticed since I came to their office on crutches) and directed me to the hospital -- stat. As I understand it from Jon's dad, his doctors were still working through other possible causes for his pain. And they didn't come up with the right answer in time.

"What do you do?"
Get it checked out. Do not wait for it to get better all by itself!!

The level of pain Jon and I felt was considerable, and (as mentioned) we couldn't think of any activity which might have caused it. That's your symptom. It ain't much, I grant you, but it helps explain to me why (according to one website I saw) 200,000 people a year die of this. It's just so subtle.

Now, this is strictly me speaking: If you start feeling a pain you can't explain and your medical practitioner starts looking for other causes, that's fine. But you have the right to ask him/her: "Could this be a blood clot? Should I get an ultrasound? A sonogram?"

And listen carefully to the answer. And if you're not comfortable with it, maybe you should ask someone else.

Jon -- the Aftermath

My brother -- Jon's dad -- sent an e-mail with some details of the coroner's report. And, as we thought, Jon died of a pulmonary embolism: a blood clot that went to Jon's lungs.

I understand that there are more details available on Jon's Facebook page -- information that Jon himself wrote shortly before he died plus postings from friends and family afterwards. But I can't bring myself to go looking for this.

I'm told, however, that Jon complained of chest pains shortly before he died and that his doctor described this condition as "bronchitis." (I can't confirm the leg pains that I mentioned in a previous posting. In retrospect, I see that my description of that was actually me projecting my own symptoms onto Jon...) And since Jon was young and otherwise healthy, it's understandable (I suppose) that the doctors didn't schedule a scan of his chest to find the root cause of his discomfort.

This last weekend, my sister and I worked on our Dad's house -- trying to get it ready to put on the market, since he's currently living in an Assisted Living facility. On Sunday afternoon, we drove over to see him and tell him about Jon. Dad's memory is spotty enough now that we had to explain several times who Jon was. Dad understood clearly that a young member of our family had passed away, but he struggled hard to place Jon's name and his position in the family. We tried five or six times, but we could almost watch the information quickly slide away from him.

On Dad's bedstand were three photos that were taken the previous weekend. We think they were taken at Jon's engagement party in New Jersey. The photos showed Jon's dad (our brother) and mom, his sister and her husband... and Jon. I hadn't seen Jon or a picture of him in almost a year, and it was striking to see what I felt was a new maturity and sense of purpose in Jon's face.

Perhaps it's for the best that Dad can't remember the details of who Jon was. He already lost his eldest son (my older brother) several years ago, and now he's lost a grandson. And it is crystal clear to all of us that the most important treasure in Dad's life is the family he's created. Dad neither needs nor deserves the heartache that the rest of us are feeling.

I e-mailed Jon's dad explaining that my doctors feel that I shouldn't be in a car for more than two or three hours a day because of my own blood clot situation. And, for that reason, I wouldn't be able to get to western Virginia in time for Jon's viewing or memorial service. And he wrote back that he was sure that Jon wouldn't want anyone to put themselves at risk so that they could attend his services. The response was beautifully worded and felt so much like Jon and his Dad writing to me simultaneously.

I don't believe I ever understood that beauty and pain could express themselves together like this...

Remembering Jon. Remembering me.

My nephew died yesterday.

Jon had been, as far as I knew, in all-but-perfect health. He was large, friendly, pleasant, and always eager to help anyone in any way he could. He was a varsity wrestler in high school and had competed for -- and nearly won -- the Virginia Sate Championship in the Unlimited weight group. He was clever and thoughtful and he was very good with his hands: auto repairs, plumbing, carpentry, electrical work -- Jon could do it all.

He was also 24 years old -- and engaged to be married. A first-timer.

He was a wonderful young man with enormous potential.

Jon had some difficulty "getting traction" in his life after high school, but recently had seemed to be putting pieces in their proper place. And I looked forward to hearing which of his many career opportunities he would decide to follow.

I only met his fiancee once, but I remember thinking, "Yes, this is a life partner with whom Jon can flourish." I couldn't make it to his engagement party -- which took place last weekend. That's right: last weekend.

Y'know, sometimes death can seem just unimaginably cruel. That such a splendid young man should be killed at such an early age. And that we should all be deprived of his gifts. His presence.

(I'm fairly sure I have the following story right, but all these events are so recent... And I will correct the story as I learn more.)

My brother-in-law checked Jon's Facebook page after he heard of Jon's death. And he found out that, the morning of the day he died, Jon wrote that he felt a cramp in his leg that wouldn't release and that he had some trouble breathing.

Classic symptoms of a pulmonary embolism: a blood clot that had broken loose and travelled towards his heart and lungs. But who would expect a robust young man like Jon to have such a condition? And who of you out there reading this would have recognized these symptoms?

Now, I know the first of these two symptoms because I had that "cramp-that-won't-go-away" feeling twice: I felt it once last year in association with the blood clot in my right leg and once again six or seven weeks ago associated with the clot in my left leg. But there's no reason on earth that Jon would have known this...

(If you've been reading this blog since its inception, you may recall the following story from the July 1, 2009 posting titled "Me and My Blood Clot." I'll give you a capsule summary:)

In late June of last year, I felt a cramp in my lower right leg, but it didn't concern me much and I didn't think much about it. (Being in the middle of radiation and chemotherapy, I had other physical issues to hold my attention.) But it kept getting worse, and I wound up going to one of my radiation treatments on crutches. The nurse on duty saw me hobble into the treatment center and she got very alert, very quickly and started asking very specific questions. Questions that started with "Why?" and "How?" and "When?" She then notified the doctor on duty.

The doc followed up by asking more questions, then saying, "Randy, we're going to give you your radiation treatment today and then send you immediately to the hospital. Don't waste time by going home and then to the hospital! By the time you're done here, I will have given the hospital staff their 'stat' instructions. Just drive immediately there and tell them your name. They'll be waiting for you." And things unfolded just that way.

I was processed through the hospital admission procedures at high speed and wound up with a Heparin drip and inflatable "stockings" that gently squeezed both right and left legs with a gentle pulsing motion. I stayed at the hospital overnight, with an hourly checking on my situation. (Yup, being awakened every hour to make sure I way okay.)

And up until yesterday, that the entire incident seemed unnecessarily dramatic. And it seemed so even after I came across the on-line statistic that 200,000 people a year die from pulmonary embolism.

But today I understand. While all this was happening last year, I had no idea that my life could literally be "hanging by a thread" -- that is, the "thread" that was keeping the blood clot in place in my leg. Now I can see that the rush to get me admitted to the hospital and into treatment, that the Heparin and follow-up Lovenox and Coumadin and the compression stockings -- all this was thoroughly justified.

Two very different stories. But I find the irony in juxtaposing them to be both frightening and humbling: if I had not been receiving radiation treatment, I would not have been swept into the hospital so quickly and I would simply have waited for the cramping to go away. And quite possibly, I would have died from a pulmonary embolism while I waited for my leg to heal itself. And if I had died, Jon would probably have heard my story from his folks, and maybe would have recognized his symptoms as matching mine and maybe then he would have sought treatment. And then maybe he wouldn't have died yesterday.

When the blood clot showed up in my left leg a couple of weeks ago, I recognized the symptoms quickly and got treatment as soon as I could. As a result, this new clot was not nearly as advanced as last year's when treatment started -- and there was no rushing around, no Heparin, no inflatable stockings, no overnight stay in the hospital. And as a result, the residual swelling was not and is not nearly as noticeable. And I was off crutches in two days rather than ten.

Over the course of my cancer treatment, I have been constantly amazed at how tough and durable life can be -- not only in my situation but in the treatment of dozens of other cancer patients I've met along the way. Our bodies want very much to stay alive and heal.

But Jon's death tells a different story -- one that doesn't necessarily contradict the "tough-and-durable" story, but one that adds an important caveat: Life can also be fragile and easily lost. Lost sometimes by what we do, sometimes by what we don't do, and sometimes independently of anything we might or might not do.

And what I've learned is that now is a time to celebrate who and what we are. And a time to be grateful for life in all its glory.

And for those of us who knew Jon, it is especially time to be grateful for having had his presence in our lives.

Health Update: 5/2/10

I wanted to hold off on saying anything about my health until today, because I had an appointment with my E/N/T guy this morning. Which I'll explain in a bit. But first:

"What was that all about?" revisited:
Last Tuesday, the 25th (at least we think it was Tuesday...) I had a follow-up appointment with Nurse Vicki at our family doctor's practice. (We think Vicki is wonderful!) Over the weekend, a nurse friend of ours had suggested that the non-appendicitis episode I'd had the previous week was due to the aforementioned -- and newly discovered -- gallstones. Like, when you pass a gallstone, it can be painful. So we made that suggestion to Vicki.

She was not crazy about that idea, because the symptoms did not sound like passing a gallstone. But she didn't have any better idea, and told us to consult with a surgeon, who would have a more informed opinion.

And wouldn't you know that the guy she recommended was the fellow who installed (and later removed) my food tube. Small world is medicine in the West Chester community. But she did recommend him very highly, and I really can't complain about him yanking the food tube out of my tummy with no warning. As described in gruesome detail in a posting from last year. I mean, he told me exactly what he was going to do. Yanking the tube out and all. And I was just shocked that he was telling me the unvarnished truth. I thought he was kidding. More fool me.

Anyway, we made the appointment, and the surgeon could not have been more understanding and supportive. He had me lay back on an examination table as he probed and prodded and poked. He told me that he had found a small hernia -- something else I was unaware of. I mean geez, what else is going to show up? And when? Gallstones. Hernias. Where does it end??

Anyway, he also said everything else felt normal and he seemed genuinely pleased that his probing and prodding and poking had not caused me any pain whatsoever.

After I described the "non-appendicitis" episode at the Hospital the previous Friday, he said that it was an "unusual presentation" of a gallstone attack. Meaning he wasn't at all convinced that the stones were any part of the problem.

Medical jargon, I guess. "Presentation." Geez.

Then he said that removing the gall bladder would not be difficult -- that the procedure was "laparoscopic," which meant several small incisions, an overnight stay in the hospital, and a quick recovery. But he also said that there was no immediate need for the procedure, except that, without the operation, there was a minor chance that the gallstones might cause some serious difficulty in the future. Further, that any future pain like I had felt on Friday would dictate the immediate removal of the gall bladder. "Presentation" or no.

And then he said, "While I'm in there, I can fix that hernia." He sounded, for that moment, much more like an automobile mechanic than a doctor. Like "While I'm replacing the head gasket, I can clean the jets in your fuel injectors and check the valve clearance." That kind of stuff. An amusing moment, I guess, if you have some psychological distance from the procedure...

Anyway, I decided not to go ahead with the gall bladder operation at this time, and told him so.

And we shook hands. And he wished us a good summer. And we parted friends.

So, in answer to the question, "What was that all about?" there still is no resolution. Sigh...


Today's Visit with the E/N/T Guy
I guess my feelings leading up to this visit will be a common phenomenon for the next couple of years. I mean, I feel fine. People tell me I look fine. But then, I felt fine just before the initial diagnosis of cancer. So what good did that do me?

I hadn't seen my E/N/T guy in months. What had my body been doing since the last visit?

There is this post-cancer syndrome. Perfectly understandable. As the days dwindle down towards an appointment like this, the anxiety level subtly ratchets up. And that comes to a head on the morning of the appointment: What will I do if he finds something? What will he say? How will I feel? Will I break down in tears in his office? What treatment options are left after the "full-court press" of treatments last year?

But my E/N/T guy is so comfortable to be around. Comfortable in his own skin. Comfortable with the job he's doing. Thirty seconds with him and you're just plain... comfortable. And you become cognizant of the truth -- that your anxiety won't help the situation at all, but might make it worse by stressing your mind and body unnecessarily.

So he probed and prodded and poked my head and neck. Inside and outside my right cheek. Then my left cheek. Up and down my neck. He peered into my nose, my ears, down my throat.

And declared that there was no sign of anything unusual. Then he told me that I looked great.

And we shook hands. And he wished me a good summer. And we parted friends.


And, oh by the way, in regards to the Friday at the Hospital episode reported previously, I forgot to mention something really important: the area of interest that day was my abdomen. Of course. But this was an area that had never been scanned since the start of my treatment. And every now and then over the last 8 or 9 months, an irksome little voice that inhabits in my paranoia would suggest that, if the cancer had metasticized to my liver or any other organ down there, no one would know it. Because no one had checked in on that area.

So the entire episode had, for me, been a big success. I had been scanned with sophisticated medical equipment; not once but twice (the CAT scan and the sonogram) and had come out clean.

And so, dear friends, I continue to get the best of all possible reports from my medical team. And it such a pleasure to share this information with all of you.

I am well.

Shall I Lichen Thee to a Summer's Day?

Or in this case, a Day in Spring?

(Apologies may be in order to Bill Shakespeare, but he seems to have appreciated puns as much as anyone!)

Blanche -- the orchid given to us by my wonderful sister last year -- is doing quite well, thank you.

Rather than putting out two or three blossoms almost simultaneously, she's decided to put all her energy into a single blossom -- and it's lovely. It may be hard to tell from this photo, but the newest addition to her wardrobe (the one closest to the top of the photo) is a bit larger than the other two, and the petals are spread wider. A bit more showy, perhaps, but in a refined sort of way.

What with the weather being warm and moist, we've been allowing her to "take the air" on the front porch. (The porch roof will, of course keep her out of direct sunlight. She's lovely, of course, but somewhat delicate...)

Deb and I know that there are Blanche fans out there, and we wanted you to know...