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...

What was that all about?

Last Friday morning (May 21st), I woke up feeling fine...

How's that for an ominous opening?

I sat up in bed for my usual morning 30-minute meditation. And felt a little unusual in my lower abdomen. Didn't hurt or anything, just felt a bit... well, unusual. This was around 6:30 AM.

By 9:00 that morning, the feeling was still there. I had been hoping that it would subside and go away once I got up, dressed, and moving about. No such luck.

I had planned a "walking tour" of West Chester, stopping at our accountant's office, the post office, the bank, our Quaker Meeting and the Quaker School; and got the trip underway by 9:30 or so. By 10:15, the feeling had turned from "unusual" to mildly painful.

And by 11:00 or so, the pain was severe enough that I had to stop my peregrinations several times to wait for the pain to let up. At times, I thought about just sitting down somewhere and calling Deb to come and rescue me. By this time, I was pretty sure that I was suffering from appendicitis.

I managed to get home and call my family doctor with a "Should I stop to see you or just go straight to the Emergency Room at Chester County Hospital?" Luckily for me, our favorite Physician's Assistant had an opening in her schedule at 2:15. (Why do these things always happen on Friday afternoons or during the weekend? Is this just a corollary to Murphy's Law?)

Our PA had me lie on the examination table and pull up my shirt so she could probe the area where the pain was located. She barely put her hands on my abdomen when I asked her please not to press so hard. She confirmed to Deb and me that the area in question was exactly where the appendix was located.

Whoopee.

(Want to know where that pain spot is? Just in case you have a similar issue? Well, you draw a line between your belly button and your right hip bone. And halfway in between is where the pain is most likely to show up. The PA told us this. And now you know as well!)

She made a couple of lightning-quick phone calls and cleared me to be seen by the hospital's Radiology Department for a CAT scan -- if we could get to the hospital in less than 15 minutes. Because, of course, the Radiology Department was getting ready to close up for the weekend. (That's 15 minutes which, of course, included the time we needed to check out of the Family Doc's office. Geez...)

Deb had driven us over to the doc's office, since I might experience another pain episode while driving. Since the timing was critical, I thought about gently moving her out of the driver's seat with a "Let me handle this one, honey" but thought better of it. Deb's a very good driver, if somewhat more cautious than I am.

But I restrained myself from this clearly chauvinist act -- and was glad I did. Deb did a masterful piece of driving to the hospital (not NASCAR crazy, mind you, but agile and rapid), and we made it with several minutes to spare.

Minutes that were taken up signing in. As in "Do you have your driver's license and proof of insurance with you, Mr. Lyons?" Double Geez...

Anyway, we were just in time. Time to sit in the Radiology Waiting Room for a half hour or so. Before they handed me the barium drink that I needed to take. Then wait an hour or so while the barium circulated in my system to wherever it had to go. And then... another dose of barium and another wait. Triple Geez...

I finally got the CAT scan, the results of which were sent via Internet to the examining doctor and his analysis sent back the same way, I was amazed but very pleased to be informed that my appendix was perfectly fine. And, other than some gallstones I didn't know I had, everything else was pretty normal.

(Now, I want to report at this point that Deb and I are getting to be old hands at hanging around in hospitals -- one thing and another. We each took books along to read. Books that had lots of pages to read. Books that would take a lot of time to read. Books that would keep our interest for long periods of time. I was particularly fortunate that my golfing buddy had loaned me a Swedish murder mystery that was over 600 pages long. Perfect!)

So the question became, "Okay, if Randy's appendix is in good shape, what's causing the pain?"

Which led to a series of blood tests and a sonogram. (The sonogram, it seems, will show up things like inflammation that might not show up in a CAT scan. Inflammation, for example of the gall bladder. Where the newly found gallstones are located. You see? You learn something new every day! "What are sonograms good for?" someone may ask you sometime. And now you have an answer!)

All of this took quite a long time. Part of it was a simple mistaken identity: I had a bandage on the inside of my right elbow where the CAT scan technician had injected the tracing dye. And my chart in the ER said I should have a blood sample drawn. And the folks running the ER looked at my arm from a distance and assumed that the right-elbow bandage meant that I had already had the blood sample drawn. (See how these things happen? Anyone could have made that mistake...)

When I finally asked someone about having the blood drawn, the mistake became apparent and, with apologies, the requisite blood was taken. But then my mistake showed up: by this time, I had forgotten to mention to anyone that I was on blood thinners. So there was no special pressure applied to my just-installed left-elbow bandage. And 30 seconds after the bandage was applied, it was soaked with blood and leaking out onto the rest of my arm.

As I walked -- gingerly -- back into the Nurse's office where the blood had been taken, she looked up at me and my increasingly red arm and asked: "What, are you on Coumadin or something?" Clever lady! (How many "Geez"es are we up to now? Four? Five?) So we discarded the soaked bandage and applied a new one -- with considerable pressure for a considerable amount of time.

Well, the blood tests came back completely normal, and the sonogram showed no inflammation of the gall bladder (where the aforementioned stones are located) or anything else in the abdominal cavity.

By this time, it was well after 10:00 PM. And there had been dozens of people through the ER. It seems I'm only one of many who experience medical emergencies on Friday afternoon and evening. Making it increasingly likely that Murphy is responsible for this timing.

However! I had not had an attack of the pain for several hours. And the tenderness in my abdominal area was significantly lessened.

So I felt comfortable in going home. No, make that grateful for going home, as I had been firmly convinced that I would be spending a day or two as an in-patient at the hospital -- following my surgery for appendicitis -- when we initially left the house to go to the doc's office that afternoon.

Actually, "grateful" isn't quite strong enough to express how I felt. I just don't know a word that's stronger.

Grateful. Grateful. Grateful.

We got home after 11:30 that night. Delighted with the outcome of the day's activities. Yeah, that's good. "Delighted." And grateful.

Deb and I had scheduled a weekend away from home at a local Retreat Center that was to start on Friday evening. And we felt comfortable in going to the Center around noon on Saturday. We're now back from that. And it was a wonderful time away. And all the more wonderful because of the events of Friday.

So what were those pain episodes all about? We still don't know. The best anyone could come up with was constipation. Which is possible, I guess, but doesn't strike me as being likely.

I'll schedule a follow-up appointment with our PA on Monday. And let you know if anything else happens.

Fumbling, but getting by...

This most recent (and current!) blood clot has been something of a Comedy of Errors -- but I don't feel much like laughing. The events I'm about to document here are a good reminder that medical folks are still just people. And people don't always get things right the first time. Or the second.

So let's start with what I know now. Or at least what I've been told to date. Because "what I know" gets changed again and again recently. And having the correct information about a serious condition like a blood clot is a serious affair.

So. I have a blood clot in my lower left leg. It's in one of the two major veins down there that channel blood back to the heart and lungs. It's different from the clot I had last year in my right leg: last year's clot reached from my lower right leg into the upper leg, which made it much more dangerous. (Think about it this way: the diameter of veins gets larger as they get closer to the heart [as smaller veins empty into a larger common one -- kind of like small streams emptying into a river]. And the larger the diameter of the vein, the larger the diameter of the clot. And the more damage the clot can do if it breaks loose and heads towards the heart and lungs.)

There seems to be a sharp division between a superficial blood clot (one in the smaller veins close to the surface of the skin) and a Deep Vein Thrombophlebitis (or "DVT") which is a clot in one of the larger veins, which are located deeper in the body cavity. The superficial clots do not represent any serious danger, and are usually left untreated. The body normally dissolves them without any assistance. (I had one of these last year in my left arm before any cancer treatment started. And it, in fact, cleared all by itself.) It's the DVT's that are the concern.

So I'm better off than I was last year, as the current clot is smaller and more remote. In addition, we seem to have caught this clot earlier than last year's clot, so the swelling in my leg is much less pronounced. Here's the annotated chronology of recent events:

Sunday, April 18: Randy and good-friend Ron drive to South Carolina for a week of golf. Trip takes 11 hours.

Wednesday, April 21: Randy feels a tightness in his left calf that doesn't release with stretching. Tightness stays with him throughout the rest of the week but, fortunately, doesn't interfere with the golf.

Friday, April 23: Randy and Ron drive home. Traffic around Washington is bad and trip takes 12 hours.

Saturday, April 24: In the AM, Randy feels fine during the Turks Head Jugglers practice session. By the PM, he's on crutches -- unable to walk without serious pain.

Sunday, April 25: Randy and Deb visit the Chester County Hospital Emergency Room. He gets a sonogram on his upper leg, which shows all blood vessels running clear. **Issue #1 -- technician does sonogram on upper leg only. He asks tech, "Why not do ultrasound on lower leg as well? That's where the pain is." Tech explains that they're only concerned about the danger presented by a DVT in the upper leg, and sonogram readings from the lower leg are more difficult to interpret.

As a follow-up procedure, Randy gets a D-dimer test. (This analyzes the blood for remnants of clots, which suggest that clotting and clot dissolving are going on somewhere in the body.) The test result is interpreted as showing that, yes, there is a significant clot somewhere in Randy's body. (Bet I can guess where it is!)

Randy is placed on two blood thinners: a self-injected medication called Lovenox and Coumadin, which comes in pills. **Issue #2 -- it turns out that the prescribed dosage is much too high.

Thursday, April 25: Visit with my chemo guy -- a visit that had been scheduled long before the blood clot issue came up. He sounds amazed that the ER would have placed me on blood thinners when the sonogram came up negative. He has me schedule a second sonogram to confirm the first, but doesn't take me off the blood thinners. **Issue #3 -- I ask him if the tech should ultrasound my lower leg as well as the upper, and he tells me "That's a good idea." (How come I have to ask that? Shouldn't he just know that?)

Doc tells Randy to make a follow up appointment as soon as possible after the ultrasound. Turns out the doc doesn't have an appointment available for over a month. We schedule a Monday appoitment with a Nurse Practitioner.

Friday, April 26: Randy has a sonogram at a satellite facility of the Chester County Hospital. The tech is much more thorough, and spends a great deal of time doing ultrasound on the lower leg. She confirms that the upper leg veins are clear, but that there is complete blockage of one of the two major veins in the lower leg. **Issue #4 -- is this a DVT? I would have said no, that DVT's are only located in the upper leg. But read on...

Monday, May 3: Nurse practitioner tells me that this is, in fact, a DVT and therefore needs to be treated as such. We question her, as we understand the situation differently. She leaves the room to confer with a doctor, then comes back and tells us she was mistaken. The clot is not considered a DVT (as it resides in the lower leg), and therefore we should stop using the Lovenox and Coumadin and begin taking a baby aspirin every day to facilitate the blood thinning process.

This being the case, we're informed, there was no need to perform the pro-time blood test to determine the current level of blood thinning. So there was no confirmation as to whether the blood thinning dosage was too much, too little, or just right...

Wednesday, May 5: Chemo doc, reviewing the situation, tells Randy to stop taking the aspirin and go back to the Coumadin. **Issue #5 -- wasn't the doc the guy who was surprised that I was placed on blood thinners to begin with?

Strings are pulled to set up an appointment with the doc on Tuesday, May 11.

Monday, May 10: Blood-thinning test shows levels almost twice as high as desirable. (This test should be performed once a week, but hadn't been performed for sixteen days of blood thinning medication.) Fortunately, Randy hadn't cut himself anywhere doing stuff... **Issue #6 -- Somehow, this simply shouldn't have happened.

Tuesday, May 11: Doc expresses surprise and concern at pro-time reading. (Maximum desirable number is 3. Randy's number is 5.) Doc backs off on dosage. Declares blood clot to be a DVT after checking with Wikipedia, and says I should continue with Coumadin for at least two months or so. With testing every week. Deb asks about the desirability of using compression stockings, and doc says "That's a good idea." Doc also frowns on any extended driving. Baltimore (roughly 2 hours) is okay, but Meadville (roughly 7 hours) is not.

Thursday, May 13: Discussed the situation over the telephone with the Nurse Practitioner we'd seen on May 3. She explains that there has been simply a difference in definition as to what constitutes a "Deep Vein Thrombosis." All parties concerned say that the clot exists in the tibial vein, but does that vein qualify as "Deep," since it's in the lower leg. But is located right next to the bone, so is literally as "Deep" as you can get in that region. Okay...

The wrap-up: So I don't feel all that abused by the medical system and am sure that everyone was doing their level best on my behalf. But I must admit there has been a loss of trust. But I have to give full credit to my chemo doc, who changed his diagnosis and prognosis right in front of Deb and me. Explaining and apologizing as he did so.

And maybe that's a good thing. To be reminded that I need to follow up on anything and everything that raises any question in my mind.

I know that every doctor I ever see rushes from one examining room to the next again and again all day long. Five days a week. Trying to keep on schedule. And every examining room has a patient with a unique situation. I can't imagine how docs -- and phycisians' assistants -- do all that and stay sane. It would certainly drive me crazy after a month. Or less...

And as my chemo doc points to me, the whole blood-clotting issue is so much a less threat to my continued existence than the cancer was. And the cancer has shown no signs of returning.

When I come off the blood thinners again -- in a couple of months -- we'll explore the reasons that I've been clotting to begin with.

I look forward to that.

A Brief Conversation / A Memory to Cherish

I had lunch today at the Pita Pit restaurant where, roughly a year ago, my Coach found me weeping over a sandwich as I tried to deal with the knowledge of my cancer and my fears about the upcoming treatments. And my fears of dying.

(Some of you may recall that my Coach was someone I knew just casually. But she recognized me as I sat in the window of this very same restaurant, came in, and asked me what was wrong. After I said, "I've got cancer," she told me that she was a cancer survivor herself, and that she wanted to know everything about my situation. After I told her about my condition and my fears, she gave me an inpired and inspiring pep talk. One that helped me find the courage to face the surgery, the chemo, the radiation, and most importantly, my fears associated with all of that. She then designated herself as my personal Coach for the indefinite future. For whatever I needed and whenever I needed it. And her presence has been with me ever since.)

I wanted to be at the Pita Pit today, because I finally found what I needed to read a pamphlet about cancer survivorship -- a pamphlet given to me by (who else?) my Coach months ago. I've looked at the cover of this pamphlet dozens of times and been unable to open it. Something inside me said "Nope, you're not ready yet." But today that voice was silent. It was time to read about the path ahead. The one that may be cancer-free forever.

So there I was, chewing my sandwich -- and weeping yet again -- as I read about the stages of transition between being a cancer patient and being a cancer survivor. (In a nutshell, it told me that there is no single way to make this journey. That you need to find your own path, and that no one can tell you if it's the right one or not. )

Oh, and I got a small bag of chips with my sandwich. The first chips I'd eaten since my treatments started. I'd declined to even try to eat chips because I was afraid that my limited saliva production would make the experience unpleasant -- and maybe even painful. But I ate them all. All the chips. Emptied the bag. (This may not sound like much of a deal to you, but for me, it was Another Step Towards Healing. I cannot express how good this felt -- to eat a bag of chips again.)

But that's not why I'm posting tonight. Here comes the story:

After lunch, I decided to ignore all the work that has piled up over the last twelve months. The paperwork. The yardwork. Everything. And take my canoe out to the lake. Something that I haven't done in more than a year. It was the perfect day -- and (I told myself) yet Another Step Toward Healing.

I loaded the boat onto the car and drove a mile or so, then pulled off to the side of the road to make sure that the racks and the boat were still safely secured. (See photo.)

I stopped the car in front of someone's house, got out, and started pushing on the rack fixtures and pulling on the web straps. In the middle of this exercise, I heard a voice behind me -- coming from the front lawn of the house -- that said, "You'd better make sure that boat is firmly tied down! If it fell off, I would have to keep it! [pause] Boy, that's a beautiful canoe!" It was the owner of the house, who had been working in his front yard garden. His pants were covered in dirt, as were his heavy work gloves. But he was wearing a dark purple shirt that looked clean.

We talked small boats for a while, then I invited him out to the street to examine my canoe more closely, explaining some of the more unusual features of the craft. I'm not sure how much he understood of the esoterica I was ladling out, but he was an excellent listener and seemed to appreciate the break from the gardening. I told him, "I'd invite you up to the lake for a quick paddle, but it looks like you're pretty well tied up here." And he confirmed that, yes indeed, he had his day's work cut out for him. And so we parted friends.

As he turned around to walk back to the garden, I had a chance to read the back of his shirt. In large letters, the shirt read " SURVIVOR" across the top. Then underneath: "National Insititute of Cancer" and some other stuff I couldn't read from that distance.

Should I have called out to him and invited him to share stories of survivorship? Maybe. But he had his gardening work to finish up. And I had a canoe I needed to get wet.

And so we both had and have our lives to live. Him on his journey and me on mine.

Surviving. And prospering.

Could Things Be Worse? Oh, Yes!

This from the Associated Press:

"Denver Nuggets [pro-basketball team] coach George Karl has another blood clot in his right leg as he recovers from radiation and chemotherapy treatment for throat and neck cancer.

"Karl's partner, Kim Van Deraa, wrote on her blog over the weekend that the 58-year-old coach was rushed to the hospital Friday afternoon with the clot.

"She said doctors were trying to determine the cause because Karl was already on blood-thinning medication."