"Shirley, Goodness, & Mercy..."

Last Mother's Day, when I was here in Portland preaching as the candidate for the pulpit at First Parish, I gave lapel pins like this angel to every mother in the congregation, not knowing that my own mother had just been diagnosed with a metastatic recurrence of the cancer that would take her own life in a matter of months, and was keeping that information from me until after the service so that I wouldn't be distracted worrying about her.

Today Susan Hasty (wife of former First Parish minister Richard Hasty) brought her angel back to me, so that she might watch over me during my own battle with cancer.

"Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the LORD forever...."

GREETINGS FROM THE SEASIDE REHABILITATION & HEALTH CARE CENTER

And I’m slowly settling into my new routine here at the Seaside Rehabilitation & Health Care Center, although it is certainly a step down from the Gibson Pavilion at Maine Medical Center. A little like moving from the Ritz Carleton to the Motel Six (which I’m told this facility used to be before they turned it into a nursing home).

The first difference I noticed right away was the food. Friday night’s dinner was something labeled “Chili” that Parker would have died for, along with “Fiesta Corn,” diced pears and a cornbread muffin (which somehow never actually made it to my tray) -- all served lovingly at room temperature only an hour or so after it arrived from the kitchen. Breakfast Saturday was two Eggo waffles with two Brown & Serve sausages, some oatmeal, OJ and milk. Lunch never did catch up with me; and when my dinner finally arrived (three slices of roast beef on white bread with a bowl of clam chowder) I thought it was my lunch and sent it back! Sunday was a little better: scrambled eggs and bacon for breakfast, and a lovely pork loin with mashed potatoes and dressing for the main midday meal. All nutritionally balanced for my specific dietary needs, of course. But basically, dorm food. And such small portions!

Much more impressed with the staff. My Occupational and Physical Therapists are all great, and are really working me hard. My first day here I broke a peice of exersize equipment by using it too robustly, and now I am teased about it constantly. But they also now have me up showering completely independently (in an accessible shower with a shower chair), and today I actually walked about 50 feet with a walker. They've also offered to check out my study at the Eastland Hotel to determine how appropriate it might be as accessible living space, and will be accompanying me to church on Friday for a "dry run" of my movement in and out of the Installation. The nursing staff isn’t quite as well-trained as at the Gibson, in that there are a lot fewer RNs and a lot more LPNs...but I also have a lot more freedom and independence and mobility now so I don’t really need that level of attention. And it’s great to watch the staff interact with the long-term residents, all of whom know each other by name.

The Seaside really is an old motel that has four wings that extend from a central lobby that doubles as a dayroom. Wing One (where I lived when I first arrived) is for Rehab and Short Term Care; Wings Two and Three are Long Term Care, and Wing Four is mostly Assisted Living, with a few short stay rooms. It’s the residents of Wing Three who pretty much rule the roost. They all have their special territories in the Great Room, and little habitual routines which one disturbs at their own peril. As a “fish” I’ve been trying hard to learn the rules BEFORE I break them, but I haven’t always been successful. Took me awhile, for example, to find a suitable place to take my meals. I kept going to empty seats only to be told that they belonged to someone else. Finally I started asking, and eventually was told that the occupant of a particular seat wouldn't be coming back, and I was welcome to sit there. Later found out that the reason he wouldn't be coming back was that he had just passed away

When I first arrived my roommate was Father Jim -- a retired Catholic Priest from the Canadian border who was ordained at the Cathedral along with his brother Pat when they were both in their twenties back in the the 1950’s. Jim lived a very interesting life in his day, and when he’s lucid it’s interesting to listen to him talk about it; the problem is that he suffers from dementia, and was having a hard time remembering to stay on his side of the curtain. Instead, he liked to spend his time rummaging through my stuff and even sleeping on my bed! So Monday night they transferred me over to Wing Four, where my roommate is Larry, who is here recovering from hip replacement surgery.

Need to finish this up so that I can get it posted later today when we're up at the hotel. Still haven’t worked out the internet access situation here, but hope to resolve it this afternoon. In the meantime, I hope this will tide folks over. Every day I feel stronger and more able. And I am SO looking forward to my Installation Service this Sunday.

Transfer Day

And the word has just come down: at 1:15 pm the ambulance will be here to transfer me to the Seaside Rehab and Health Care on Baxter Boulevard over on the other side of Back Cove, which gives me just enough time to order a little lunch, pack up my stuff, and write this quick update. Have no idea what my situation will be like there compared to here -- whether I will have easy internet access, for example, or how much freedom I will have to control my own schedule. I imagine that there won't be that much going on over the weekend though, which should give me ample time to work these issues out. One would hope. If not, these could be a very LONG two weeks. And it does concern me that this new facility doesn't even have a website of its own.

My nearly month-long stay here at Maine Medical Center has been an unusual experience to say the least. It was completely unexpected -- a detour which has altered the trajectory of my treatment in every way. But I'm trying to take it in stride and go with the current, roll with the waves, flow with the tide....

The idea that I might actually spend the rest of my brief life in a wheelchair receiving chemotherapy seems incomprehensible to me. I'm still planning to sail and to play more basketball, not to mention walking all over the West End with my little dog, visiting with our neighbors and waving hello. Assuming, of course, that the chemotherapy gives me the outcome we're all hoping for, and I am healthy enough to return to "normal" living in September.

Is it faith and hope, or denial and bargaining?

You tell me.

Does it matter?

You bet your life it matters....

Another Day, Another Glitch

OK, apparently I'm NOT being discharged this afternoon to the New England Rehabilitation Hospital. Apparently I'm being discharged sometime TOMORROW to a different facility that my insurance company feels is more appropriate to my level of need for care.

Which might sound like the start of a stereotypical HMO horror story except for the fact that I'm actually OK with that.

I believe in universal access to health care. I'm comfortable with single payer insurance (and even "socialized medicine"), and I don't especially believe that I'm entitled to "Cadillac" level service just because I'm special (or perhaps I should say, I believe we are ALL entitled to the best care available simply because we are all special). And I certainly don't mind being "triaged" to care appropriate to my needs so long as that care is effective and provided in a timely manner. I'm extremely concerned about the ways that rising health care costs are limiting access to health care to those of limited means, and I want to do what I can to help hold those costs down. And I am profoundly grateful that the members of my congregation, through their financial support of this church and my ministry here, have made it possible for me to afford good health insurance in the first place.

New England Rehab was what the doctor ordered, so that's where I thought I wanted to go. But if I can get comparable services at this other facility, I'm just as happy to go there too. I've already had one denial from Harvard Pilgrim about my decision to go "out of network" for a second opinion at Memorial Sloane Kettering in New York (rather than waiting two weeks to see someone at Dana Farber in Boston) and I was planning to appeal that one anyway (if I hadn't been stuck here in the hospital). But I was also willing to pay for it out of pocket if I had to, just to set everyone's mind at ease that we had the correct diagnosis, that I was going to receive the right therapy, and that there weren't any "magic" pills that they kept behind the counter only for the special people who asked politely for them. The fact that the Oncologist there identified this area of my spine (which has cause me all this trouble) as something which required some additional attention is probably just coincidence, right?

I'm actually a lot more concerned about what I'm going to be doing when I'm NOT receiving therapy. After three weeks here in the Gibson Pavilion, I'm starting to feel a little TOO at home. Now I'm worried that once again it will take me weeks to establish effective internet access, or to figure out a daily routine that allows me to rehabilitate myself, keep my pain under control, and still find the time (and lucidity) to read and write and do what little of my job I can still do right now.

But mostly I want to be able to get up out of this wheelchair and walk the steep stairs to my apartment, to my office at church, to the high pulpit in the Meeting House in September. Never mind the cancer. That is what it is, and will be what it will be. But it is SO frustrating to live just two blocks from here, and know that I might as well be living on the moon....

They only come out at night...

And finally I have a discharge plan. Transfer tomorrow to the New England Rehabilitation Hospital here in Portland for two weeks of Physical Therapy, and then afterward (depending on how well I do) several short-term options from there, including an assisted/independent living facility here in the West End that will also serve me three meals a day, provide weekly cleaning service, and offers transportation to my medical appointments. It's not cheap, and I'm not really sure how much of it will be covered by my health insurance, but fortunately the church has provided me with a good insurance plan, and if I need to I think I can afford to stay there through the entire chemotherapy without being TOO much out of pocket.

And the best part is, Parker is welcome too! In the meantime, my pastoral care coordinator at the church is arranging a rotation of dogsitters who can each take her into their homes for a week at a time, until I'm ready to have her live with me again. Poor critter! She's basically suffering from (and living with) the same problems I am: disrupted routine, chronic pain, unable to get to the bathroom on her own. So lets hope that we can both make a full recovery, and be back living our "normal" lives by the end of summer.

Courage

Saw this great quotation on my friend Steve's e-hope site, and thought I'd share it here: Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow." -- Mary Anne Radmacher

Sushi, Sea Dogs, and One More Small Step Forward

And my friend Jerry flew back to Portland Oregon today, after treating me to a truly remarkable three-day-weekend in the hospital. The plan for last night had been to order Sushi, and sit down in the patient's day room listening to the Sea Dogs on the radio while we watched the stadium from the window...but we ended up just watching Game Seven of the Stanley Cup playoffs between Boston and Montreal instead. It's hard for me to describe just how much Jerry's visit meant to me -- a brief vacation from this strange, surreal world into which I was literally carried kicking and screaming in pain. No, it wasn't in the plans. But with the help of friends like Jerry, we're going to figure out a way to make it work.

It's also little hard for me to believe that I've now spent a full three weeks here at the Maine Medical Center. Was originally admitted Friday March 28 and stayed through the weekend; was discharged April Fools Day...and three days later I was back again right around the corner from where I'd been before. But the good news is that the pathology reports are back now from Friday's bronchoscopy, and it looks like I'm clear to be discharged again. Only this time, instead of sending me home, I'll be heading into Rehab for a couple of weeks of Physical Therapy, to see how much of my mobility I can regain before beginning the 18 week regimen of chemotherapy I was originally supposed to begin on March 26th.

Of course, there are still a few more obstacles in the road. The facility I would most like to be discharged to may not have a bed available for me for another day or two anyway. And all of these facilities will want to know that I have a safe and secure place to go to when they're through with me, which is a little like asking me to predict the future, since I won't really know WHAT my abilities will be until after they're done with me.

And finally, none of this really has anything to do with treating my cancer per se. It just sorta dropped into my lap (or more precisely, my left leg and lower back) like a bolt from the blue, and trumped every other consideration. Instead of living in my own walk-up apartment and getting out-patient chemotherapy once a week, I've been trapped in the hospital learning how to get around in the world under my own power all over again.

So I suppose you could call it ironic. But these are also the issues that concern me most. I'm not at all worried about my cancer just now; I feel like I'm receiving as good of treatment as I could receive anywhere in the world, and that statistically, whatever the outcome, I'm destined to be on the high side of the bell curve, simply because of my age, and my otherwise good health, and the outpouring of support and encouragement I've been receiving from those who care about me, and who are sharing this journey with me.

But these more pressing issues: where am I going to live? who will care for my dog in my absence? will I ever be able to get up out of this wheelchair and walk again? -- these are on my mind pretty much every waking moment. They're inescapable, and until they're resolved....

Patriots Day

And, of course, despite my best intentions, I still ended up doing a little bit more yesterday than I really should have. But I think on balance it was worth it. Enjoyed a nice assortment of visitors after church, then a very exciting come-from-behind Red Sox win, followed later that evening with a blow-out Celtics victory and pizza from Bonobos -- my favorite neighborhood wood-fired pizza place. Having my friend Jerry here visiting has really been good for me, in a way that's hard to explain. It feels so "normal" -- just to sit around shooting the breeze about literature, politics, whatever, while taking in the game and pouring back a few Ginger Ales. So yes, I stayed up past my bedtime and ate a few things I probably shouldn't have. But I think it was worth it. Definitely.

Today is Patriots Day here in New England: the anniversary of the 1775 Battles of Lexington and Concord, when British regulars from Boston marched into the hinterland in order to seize and destroy a cache of weapons being stockpiled by the local militia, and ran into a swarm of Minutemen who mustered at the Old North Bridge and chased the British all the way back to Charlestown. It's ironic, in a way, that today we should celebrate our Patriotism by celebrating an insurgency. But you know, that's history.

But in any event, since Carlisle was/is the next town north of the Old North Bridge, Patriots Day awas always a big deal at the last church I served. The Minutemen reenactors would gather on the Town Green in front of the Meetinghouse and fire off their muskets, then lead the procession through the woods down to the Old North Bridge to join in the festivities there. And, of course, it is also the date of the Boston Marathon, which attracts runners from all over the world.

But for me, this year here in Portland, it's just another day in the hospital. Another day of waiting. Another day of wondering what's next, and trying not to worry about that too much. Another day to watch another ball game, and eat another meal, and to spend some time with friends. Maybe not such a bad way to spend a day after all....

Putting the Patience back into "Patient."

And I honestly have to say that yesterday was probably the best day I've had since I was last discharged from the hospital on April Fools Day. Since that day it's been basically three weeks of constant pain and a dull narcotic daze, poor sleep, imposed immobility, fatigue, frustration, and a litany of other "complaints" which I've been trying simply to take in stride, even though I am physically incapable of bearing any weight on the left side of my body.

But this weekend it's finally starting to feel like maybe I'm turning a corner. I'm still certainly not in any shape just to jump out of bed and resume my "normal" lifestyle (whatever THAT is now). But it feels like I'm making progress in all the little ways that matter, and that feeling makes all the difference in the world. My friend Jerry is out visiting me from Portland Oregon for the weekend; this is something he'd worked out shortly after he learned of my diagnosis, before anyone had any idea that I would be hospitalized for so long. We'd planned to check out some of the local restaurants, maybe take in a Sea Dogs game...but instead we've just been hanging out here around the hospital catching up on our twenty-year friendship, which is astonishing to us both.

Margie and I met Maggie and Jerry when Margie and Maggie were both first-year Law Students at Lewis and Clark. Maggie and Jerry had both just moved to Portland (OR) from Boston (MA) and were looking for temporary housing while they looked for a place of their own; Margie and I had advertised that we had space available for people who were comfortable around large dogs (a Weimaraner named "Calvin" and a Dalmation named "Luther"); and the next thing we knew, we were like members of a large, extended family. For years we celebrated the holidays together: Thanksgiving, Christmas, Easter dinners (plus whatever else we could think of at the time); and even though we haven't been in close touch since I moved here to New England in 2001, the same could be said of most of my West Coast friends.

But this weekend it's been just like old times again. With me feeling "on the mend" and Jerry here to wheel me around, we were able to get outdoors and sit in the courtyard yesterday afternoon; and then last night he brought in take-out from Binga's Wingas and we watched the Bruins and the Canadiens in Game Six of the Stanley Cup playoffs. What can I say? The Sea Pups are on a road trip this weekend anyway. So tonight it's seafood, with the Celtics to follow. And maybe a little of the Red Sox from Fenway this afternoon.

This morning I met Jack Gibson, the man for whose wife the Gibson Pavilion is named. Apparently he often comes in on the weekends to meet the patients here and to hear their stories, and to share his own story with them. He told me that he is also a three-time cancer survivor himself, and that as a child he occasionally used to attend First Parish with his grandmother. So I gave him an invitation to my Installation Service, and perhaps next time I see him it will be back at First Parish again.

As I suggest in the title, I think that the most challenging thing for me to do right now is to stay patient: not to rush back too quickly, or to push myself in ways that are just going to make things more difficult down the line, but rather to let the healing process take place at its own pace and speed. John Wooden used to tell his players to "move quickly but never hurry" and this is good advice for me as well. I feel the urgency of treating my disease. I'm eager to resume my work at the church, and missing the day to day activities of my daily life. But the most important thing now is simply to "wait upon the Spirit," and let the healing process take its course. And that waiting can sometimes be the most urgent task of all.

Waiting, Waiting...

Well, yesterday's "bronch" went about as well as could be expected; still won't get any meaningful results until Tuesday after the holiday, so in the meantime I've got a three-day weekend here at the hospital with nothing to wear and no place to go anyway. Which is not EXACTLY true. There are lots of places I would like to go, if only I were able.

In my experience a bronchoscopy is one of those procedures which sounds a lot worst than it really is, and where the anticipation/preparation is MUCH worse than the procedure itself. The worst part of all was that I couldn't have anything to eat or drink from midnight until after 3 pm the following day -- not exactly the end of the world, but annoying enough to distract me from all of annoying side-effects of the procedure itself.

Once my physicians (who are multiplying exponentially) have had a chance to look at the bronch reports and make an assessement, I should know what the next step in my treatment will be: whether I begin my chemo right away, or start some sort of physical therapy while they knock down an infection with antibiotics. Meanwhile, I'm continuing to feel marginal but steady improvement to both my strength and my mobility, which is very encouraging. Still not ready to shoot any hoops, or even to return to my walk-up apartment. But I am becoming quite nimble in this wheelchair, and in getting around to perform my "daily functions."

Still, with all the drama, it's easy to forget that these entire past three weeks have just been a sideshow -- a distraction from the more important task of treating my primary tumor. And the hardest part of all is simply this feeling of being "stuck" -- unable to move about, unable to do my job, out of touch with what is happening in the world around me and incapable of participating in it in a meaningful way. But I'm trying to learn how to take advantage of this "enforced idleness" as well: to take the time I know I need to take to meditate, to stay focused on the big picture, to remain centered within myself and in touch with all of the ways I feel so blessed and fortunate.

And I certainly don't mean to sound like Pollyanna. But the outpouring of affection and support I have received following this diagnosis has truly been overwhelming. It routinely brings tears my eyes, and feelings of gratitude so profound I scarcely dare try to express them....

Talk about coincidence! Check out this LINK from today's Portland Press Herald religion page.

In any event, here we are at the end of the day...and maybe I really AM spending too much time at the office....

Three (baby) Steps Forward...

Feeling much better today than I did earlier in the week, and am even starting to make some progress towards being discharged, but there are also still a couple of big hurdles that have to be leaped, and I still don't quite have the "hop" to get up and over them.

Good news is that the Fentanyl patches really seem to be doing their job; went off the time-release Morphine drip earlier this weekend, and today we were finally able to unhook the Morphine-on-Demand, and switch over to pills for "breakthrough" pain relief. So I'm no longer plumbed for narcotics (although the patch does give me a steady base of relief), and as a result I've no longer have to wheel an IV pole around with me wherever I go, which gives me a FANTASTIC sense of freedom.

I'm also making some progress on the mobility issue in general. Moving around in the wheelchair, and transfering myself from the bed to the chair to the toilet(for instance) is getting a LOT easier, although it's still not something I can do quickly, in the middle of the night. Hence I'm still taking my showers down the hall in a shower seat, and the imfamous "bedside commode" remains my nightly accomodation. Still can't bear any weight on my leg for any significant period of time either, and when I move wrong the pain is still excruciatingly incapacitating, and lingers for a long, long time. So I try to do that as little as possible, while I wait for the benefits of this radiation therapy to kick in. Must confess, after ten full sessions I'm still not seeing much of a tan. Maybe I glow in the dark instead....

My aunt Mary Lou arrived yesterday safely on the Red Eye from Seattle to Boston, took the bus from Logan here to Portland, found the apartment without any trouble, let herself in with the key we had mailed her, dropped off her bag, found her own way to the hospital, dropped by my room to let me know she was here, and went back to the apartment to take a long nap while I went about my normal daily hospital routine. Today she explored the city and ran a few errands for me (like picking up my mail from my study at the Eastland) - again completely independently and with only minimal directions from me. I'm really looking forward to having her here for the next few weeks; her independent,adventuresome, self-reliant spirit has always been an inspiraton for me, and the fact that she is also a cancer survivor (15+ years now!) gives me confidence that I will enjoy similar success.

Today I was also able to get around to having my Living Will and Durable Power of Attorney for Health Care signed and notarized, and finished mailing out the last of the formal invitations to my May 4th Installation Service to local colleagues who are not part of our immediate Ministerial Chapter. I'm also finally starting to get around to making individual calls and e-mails to personal friends at a distance - people I wish could have been the first to know, but who I've been unable to contact personally because of the problems I've had here at the hospital getting on-line with my own computer. The word is spreading slowly through this blog and the grapevine. But my inability to contact so many of my best, lifelong friends has been frustrating, to say the least.

The biggest frustration though has been around this entire problem of being discharged from the hospital! My apartment is only two blocks away, but with my mobility restrictions it might as well be on the moon. My study at the Eastland is much more accessible, but will still need to be modified considerably before I can live there with the level of mobility I have now. There have been marginal improvements every day, and I'm told that the treatments I've received will continue to show me additional benefits for several more weeks, so I'm optimistic I'm not going to be stuck in this chair forever. But that still means the next step is probably a Rehab Facility, rather than directly home again.

Meanwhile, because of something the doctors saw on my CT Scan last Monday, I'm scheduled now for a second Bronchostomy tomorrow. After nearly three weeks in the hospital, all of which I've spent on immune-suppressing steroids, it looks like I may have picked up an opportunistic infection in my left lung, which (until it can be cleared up) will also prevent me from beginning the chemo to attack the tumor on the right. So, more tests and more pills and more waiting -- a "setback" I think they call it, although if you need a bright side at least they don't think it's malignent.

Better Days

Everybody keeps telling me that I ought to be concentrating on my own health right now, but I still can't help but thinking about how my illness also effects the lives of the people in my church, who in many ways share this "afflictive dispensation of Divine Providence" with me, only by necessity second-hand, at arm's length, and through rumor and hearsay.

Even so, it has to be a little unsettling to hear that one's minister has been carried out of his apartment and spirited off to the emergency room by firefighters, and that he's been there now for nearly two weeks without being able to walk, and that nobody really knows when he might be coming back again. But in the greater scheme of things, it all sounds a lot more dramatic than it really is.

And this is one of the reasons I so enjoy it so much when people stop by to visit me on Sunday afternoons after church, even if only for a moment or two. Because not only do I miss being in church and being able to shake all of your hands there personally (like I normally do EVERY Sunday), I also think it's nice for folks to have a chance to see me with their own eyes, and to realize just how good I'm feeling and how eager I am to get back home again myself.

Obviously, parading 150 people through a hospital room on a Sunday afternoon isn't really very practical. And with any luck, by this Sunday I'll be discharged anyway (probably to some sort of rehab facility) where I can begin the more extensive physical therapy to restore my full mobility again. But I do hope that those of you who have taken the time to visit me here will share your experience with others in the congregation, and also that you will encourge folks to read this blog and to use the "comments" section to share their good wishes with me.

I'll be up and around again before you know it.


LINK: Mahayana Lady

Good Days, Bad Days

It's still a notion that I'm trying to get my head around. After such a delightful weekend, woke up early Monday morning with some pretty serious resting hip and leg pain, plus sweating, shortness of breath, and audible chest congestion that sounded terrible even to me. Took a couple of hours just to get myself up and out of bed, then a quick morning excursion for a chest X-Ray and a CT scan, a morphine-fueled trip down to the basement and thru the tunnel for my regular radiation therapy, then finally at long last a reasonably pleasant afternoon and evening in the company of my family as I finally got myself squared away again. And will miracles never cease: with the indispensible assistance of MFW, even managed to file my taxes on time for the first time since our divorce.

This morning, after a comfortable night's sleep, woke up well-rested and relatively pain-free, and it's all good again. Back to business as usual. Even took a couple of baby steps with the walker. That's life, I guess. Go figure....

Who let the Dawgs in?

Enjoyed a nice, steady stream of visitors Sunday after church - mostly church-folk, obviously, but also a surprise visit from Paul and Steve (who had just been discharged from Mercy Hospital the day before). And then, at the very end of the day, with the permission of the Charge Nurse (and after a bath!) The Adorable Parker made her debut here at the hospital. The last time she saw me I was being carried out of our apartment by four firefighters, and after ten days absence I'm sure she was starting to wonder whether she was ever going to see me again. And even though I know she's been in good hands, it was nice for me to see her again too.

In the greater scheme of things, no real news yet. I will receive my last radiation treatment on Tuesday, and will no doubt be discharged from the hospital shortly after that. The question is, to where? -- I'm still not mobile enough to return to my apartment, and depending upon how well these treatments continue to help me, it could be another month or so before I really see the full benefit of them. So the first step will probably be to some sort of Rehab facility, where I can continue to receive the kinds of personal care and physical therapy I need right now.

My Dad finally returned to California Sunday, after a month of being here with me. His presence has really been indispensible, and it's also been great just to be able to spend so much time together - really more than we have at any time since my childhood. It's really true; the fruit doesn't fall far from the tree. An insight which can be both frightening and reassuring in the same moment, and which leaves me feeling both humble and proud.

My formal Installation at First Parish will still take place on Sunday May 4th as scheduled, and the Marshal has organized everything so that I can participate in and complete the entire ceremony in a wheelchair. Kinda like FDR. Likewise, my chemotherapy is still scheduled to begin later this week, once my radiation treatment is completed. Chemo is only a once-a-week treatment: two weeks on and one week off for a total of four to six cycles, which means that it should be completed by the middle of August.

God Willing, I will be feeling healthy enough to return to the pulpit full time for the start of the new church year in September. That's the goal. But that's also still five months away. Plenty of more pressing things to think about in the meantime. It's an awfully big ocean, and an awfully small boat. But I know the course, and I have a great crew, a sound vessel, and a firm hand on the tiller. Now I just need to find my sea legs again....

Bad Banana

Among the many, many, many cards and encouraging e-mails and phone calls I've received since my diagnosis (most of which I will doubtlessly never be able to reply to personally}, some of my favorite have been from the Sunday School classes at First Parish. We've taped them to the wall of my hospital room, and I look at them for inspiration every day.

But it took me awhile to figure out what one of the children meant in their message. It looks like the words "bad banana" covered by a large international VERBOTEN sign -- you know, a big red circle with a slash through it. I guessed this because there is another, smaller red circle with a slash through it pointing to the larger one just in case I didn't recognize what it was. So I understood that bad bananas are forbidden. But just what is a "bad banana?"

I love the way kids think. When I first announced my diagnosis to the congregation here, I described my primary tumor as being "about the size of a tennis ball, if you can imagine a tennis ball squeezed into the shape of a jalapeno pepper." Then it dawned on me. Here in Maine, jalapeno peppers are not exactly a standard lunchbox item. But bananas are!

So I did get the message, as well as a fun puzzle to challenge my mind for a few minutes on a slow afternoon. And even though the contrast is terrible and it could use a good photoshopping, here is a picture of my two MMC moose...if you look very carefully you just might be able to make out the bad banana right where you'd expect to see it if you had X-Ray vision. But at least THAT banana is gone now...and let's hope that the other one disappears half as easily as it did....

A Long and Heartwarming Story

It looks now like my computer woes have finally been resolved, at least for the time being, and the way that this all happened is one of those wonderful "small world" stories we all love to hear even if they do sometimes seem to drone on forever. But maybe I should begin at the beginning.

When I was first getting ready to move to Portland last summer, I came here househunting and met a fellow named Steve, who had an apartment to rent. The apartment wasn't right for me, but I really liked Steve - a man about my own age who grew up here in Maine, and has spent much of his life living in the Carribbean aboard a 40' sailboat. It also turned out that Steve had just been diagnosed with cancer, which was a brand-new experience for him; and as we talked it occured to me that fortune had brought us together for some sort of reason, and so we befriended one another -- not really in a strickly "pastoral" sort of way, but just the way a lot more folks ought to when they meet somebody with whom they click and share some common interests. Spent a lovely late-summer day with him at his mother's camp up in Harpswell helping him put away some of his sailing gear for the winter, and generally tried just to hang out a little every few weeks or so...maybe catching a bite to eat or just strolling leisurely around the West End while the weather was still nice. As his medical condition changed these sometimes evolved into hospital visits, and I gradually got to meet some of his other friends and family as well, as they rallied around Steve in his illness. I was always so inspired by the "seaworthy" qualities Steve brought to his situation: his self-reliance, ingenuity, resourcefulness, and optimistic confidence that he could take each new challenge in stride. Or at least that's how it looked to me. Awfully big ocean and an awfully small boat. But Cap' just stays on course and keeps on sailing, no matter how heavy the weather.

Then I got my own diagnosis, and suddenly Steve became a fantastic resource for me as well. He'd just been over the steep part of the learning curve, and knows the territory pretty well. He's even had this exact same treatment I'm undergoing now, with very successful results. Which brings us right up to earlier this week, when I was rustling through some papers my father had just brought me from home looking for Steve's number at nearby Mercy hospital, where he'd been admitted for treatment himself last week. The Maine Med I.T. guys had been in and out of my room all day, without any luck at getting me on-line; but as I was looking through the papers I noticed a new telephone in my room, and started wondering where it had come from and whether maybe I could call out on it rather than wheeling myself all the way back to the bed. Then I heard a voice asking "did Dave leave some phones when he was up here this afternoon?" and glanced up from my papers, recognized a familiar face and realized it was Steve's brother Paul, who works on the Information Technology team here at MMC!

Skipping quickly to the end, Paul had Steve's number with him, took the phone back (which wasn't really connected to anything anyway), and hooked me up with a "loaner" laptop that should get me through to my scheduled discharge next Tuesday. So the blogging at least should become a little easier, even though I'm still reading my e-mail on the Treo (which, for those of you who asked, is simply a fancy cell phone with an integrated Palm Pilot which I bought some years ago now because I was tired of carrying both devices, only to discover that all it really did was make it hard to check my calendar while talking on the phone....)

Today looks to be a quiet day with my family - my father and my brother, plus my former wife and adult stepson (who are here now visiting from the West Coast)...No Radiation, No Physical Therapy, no "procedures" of any sort...just a chance to sit around in the company of people who love me, and recuperate from the hard work of healing....

Progress, Not Perfection

This is the message they've been giving me since I arrived here. Not JUST "slow & steady..." or "one day at a time" but simply small, incremental steps in the right direction. Sure it's frustrating. But it's also movement toward the goal.

Big medical issues right now are completing my radiation treatments next Tuesday, pain control, my own mobility and the accessibility of my lovely, quaint 1st floor turn-of-the-century walk-up apartment. When I am eventually discharged from MMC next week, it is doubtful I will be able to go straight home...but the question of where I WILL go is still up in the air. I can say this: I will be going SOMEWHERE.

Meanwhile, the computer saga continues to evolve. Five different I.T. techs have been working on it so far, and it's stumped them all. Last night a friend from church brought his old IBM laptop up for me to try, and we couldn't get it to log on either! So now the techs are REALLY stumped. Still, I suppose if I have to have a "mystery diagnosis," I'd much prefer a computer problem to a medical condition.

Will Wonders Never Cease?

And assuming (which is a pretty big assumption) that I've correctly understood & followed all the proper directions, this could well turn out to be my first "mobile" post by e-mail from my Treo to my blog. Talk about new tricks for an old dog!

And you'll notice I didn't say anything about "God Willing." Personally, I actually believe that God's "will" (however we choose to westle with that concept) has a lot to do with what happens to us in life, and that learning to live comfortably with that has a great deal to do with how happy we are living the lives we have been given.

But not today. In this instance, its all just about my ability to understand and follow directions

Two Moose and a Giraffe go in to the ER....

Still working hard to find the proper rhythm for this blog, wrestling with the competing challenges of when I have time to write, nothing is generally happening, while when things ARE happening it becomes hard to find time to write, plus even simple access to the internet itself gets problematic, yet people assume from my silence that something terrible has just happened and that I must be on critical life support in ICU, when it's really just my iBook acting snotty about who it will and will not talk to, and the fact that I'm physically incapable of walking across the room to throw it against the wall.

But apart from these minor details, this past weekend has basically been business as usual here on the Gibson Oncology Pavillion. Was admitted Friday morning (as I wrote in my last post here), watched the basketball games Saturday night (and blogged over on my Obi-Wannnabe-Kobe site about each of them afterwards)...woke up Sunday morning without internet access, and nothing any of the help-desk guys here or in India have been able to suggest have helped me restore my connection. So now I'm sitting up in a wheelchair at the public access computer, just trying to get a little caught up so that folks will know and understand that I'm still OK and receiving my treatment right on schedule. And once I get back to my regular computer, I'll try posting the photo that goes with the headline.

Meanwhile, from all reports the Sunday service at First Parish came off perfectly smoothly in my absence, just as they have pretty much every Sunday for the past several centuries. Our church treasurer (himself a preacher's kid) read my sermon in such a way that my "authorial" voice was present even though he obviously wasn't me, and I'm told that my message on Volunteerism (which I'd preached before years ago on Nantucket) was clearly heard and understood. But I would have loved to have been there to see the reaction to one of the illustrations I offer of a "real" volunteer: Jim Bowie asking four strong men to carry his bed across the line Colonel Travis had drawn with his sword in the sand at the Alamo, since he couldn't walk across it himself. Now THAT'S a Volunteer!

There was apparently another very nice moment in the service when one of the lay worship leaders passed a stuffed moose around the Meeting House, and everyone in the congregation who wanted to gave it a hug. Later on one of my visitors brought the moose with them up to my hospital room, so that I could receive that same hug in person -- along with cards and posters from the Sunday School students, and such an outpouring of good thoughts and prayers and warm wishes from the members of that community. It feels so mysteriously tremendous and fascinating: I've been preaching this "doctrine" (with evolving conviction and sophistication, I like to think, but mostly just on faith), for about thirty years now..."By their fruits shall ye know them," "People are Precious," "Wir alles sind Gotts Kinder," "Be the Change You Hope to See," "Pay it Forward," "It's a Wonderful Life." And now suddenly it turns out to be true. It's enough to bring tears to my eyes. It's almost enough to make a believer out of me.

But enough of this sentimental silliness. How 'bout them Jayhawks?

A funny thing happened on my way to the tanning booth....

You know, all on its own, radiation treatment itself is nothing special. They put you on hard, flat bed, wheel you under the machine, line up the laser sights with the tattooed targets, zap you a little on the front, then roll the machine around to your backside to make certain that you are evenly browned on both ends. It's all over in less time than a quick "fake and bake" on your lunch hour. The most annoying part is sitting around in the waiting room waiting your turn and listening to the hospital volunteers make small talk while watching "The Price is Right."

Finally got my first in-patient treatment Tuesday, and was sent home from the hospital later that same afternoon. Wednesday's outpatient appointment went fine as well; had breakfast out beforehand, and then afterwards in the afternoon even did a little grocery shopping and ran a few errands before attending the evening Executive Committee meeting at church.

Thursday, not so good -- excruciating nerve pain again in my left hip, radiating up my spine and down my left leg to my toes, which basically made getting from my bed to the bathroom to the living room couch, back to the bathroom and back into bed again (with the assistance of three grown-up men) a full eight-hour day, and forced me to miss both my morning and my rescheduled evening radiation appointment, and also the welcoming wine & cheese reception for new members I've been looking forward to for weeks.

And I think my poor dad was in even more pain than I was; every time I yelped he reached for the most potent narcotic in the medicine chest, which made for a VERY interesting Thursday night.

My physician tried to tweak my routine pain treatment protocols to solve that problem, but we never did get to a good homeostasis -- and so once again Friday the firefighters are bouncing me down the tight steps of my quaint 19th century walk-up apartment and off to the hospital, where it appears I'm stuck until the lesion on my spine shrinks enough from the radiation that I can withstand the pain well enough to get to those appointments as an outpatient.

So, more frustration: missed the party, won't be able to preach my sermon Sunday (although it's all printed out and in the hands of a very capable reader), plus I'm days behind on my blogging and the cards and letters keep pouring in. And I still think that the best possible thing the Doctor could have prescribed for me on Thursday would have been a Valium for my dad.

But we've talked, and I think he gets it. I know it's hard for him too. One of the most difficult feelings in the world, I think, is that feeling of wanting to be able to do something and realizing you are incapable of doing anything. As a minister, it's a feeling I've wrestled with more times than I can count. But for men like my father, who like to DO, I think it is both extremely unfamiliar and quite uncomfortable.

This whole issue of "boundaries" is a tricky one even when people are feeling good. Suddenly becoming a patient myself has subtly yet profoundly changed the dynamic of my "pastoral" relationship with many of the members of my congregation, in ways that I've sometimes read about, but for the first time am starting to see close up with my own eyes. As a "healthy" pastor, I basically minister as the face of a congregation -- an individual and a person, of course, but more importantly as a persona and a role. I represent the community -- that amalgam of names and faces who share my concern and would all like to be there personally if they could, but who send me in their place to take the lead and provide guidance for everyone. The pastoral relationship is a very one-sided relationship because it's all about giving: not "me" giving to "them," but the members of the community giving THROUGH me to one another.

And then suddenly I become become ill myself and everyone is painfully reminded and aware that I am a real human being again. And of course, the community all wants to give back. Which is great -- except for the radical asymmetry of it all. I LOVE receiving the letters and e-mails of support and encouragement, and the fact that people are signing up in droves to provide me with rides, to shop and cook, to walk my dog...all the little things I am currently incapable of doing for myself, and which my neighbors are easily and cheerfully doing for me.

But what I REALLY need are people who are willing to step up and take over some of my role of being the pastor to OTHERS in the congregation -- to be the reassuring voice "of the community to the community" that this is all a normal part of life, that we will get through this together, and that (like my father) we are all wrestling with personal feelings of our own about what to do and how to react to this situation which truly effects us all.

I think that the rest of the staff in particular could use lots of support and encouragement from the members of the congregation. We are a small staff as it is, and being a player down means that the others all feel that they need to step up and try to fill in, at precisely the moment when the additional demands on getting all of their own work completed are even more pressing because of my absence. The Worship Committee is also doing an excellent job of arranging for Sunday Services through the end of our regular program year, and in such a way that will still allow me to participate from time to time if I'm feeling up to it, but will not depend on me being there at all if I'm not.

The plans for my Installation are also in very able hands; and that other than green-lighting a detail or two here and there, my basic duties that day may well consist of being carried into the meeting house like Cleopatra on a sedan chair, and repeating a few "benevolent dictums" at the end. All while wearing my bright crimson Harvard Robes with complimentary maroon First Parish Church ball cap.

Which brings me to the other interesting aspect of my experience so far. I hope that everyone will keep in mind that this is all still relatively early in the ball game for me: its like the first innings of opening day, with plenty of baseball yet to be played and the entire the season still ahead of us. I understand how tempting it is for people who are a LOT more experienced with these issues in their own lives to want to try to save me some of the agony of traveling that distance myself. But you can't. Your insights are important, your wisdom is comforting, your encouragement gives me support. But as you well know, much of this journey is simply something we each have to do alone. Simply knowing you have been there makes me confident and gives me the courage that I can follow. And that's really all anyone can expect or ask.

T--d to Joy!

Isn't it magnificent how sometimes the simplest achievement can bring such great pleasure? Now that I've eliminated I can finally evacuate the hospital, and return to "normal" life. Was tempted to take a photo with my camera phone, just to document my success for posterity. But you know, there are still a few details of my life the sharing of which falls beyond the pale of delicacy.....

There's Always a Bright Side

(a little early morning April Foolishness to lighten up the proverbial dark night of the soul)

Sure, facing a life-threatening cancer diagnosis is hardly all fun and games. But I can think of at least three potentially good aspects of this experience.

1) I no longer wake up in the middle of the night worrying about whether I will be able to save enough money for retirement. No, seriously. This used to bother me quite a bit. Now I never give it a moment's thought....

2) Sudden and Unexpected Weight Loss. OK, I'm still waiting to see this happen. But I have faith that it will happen for me eventually.

3) Sympathy Sex. Alright, admittedly, even if I were feeling frisky enough to pursue this activity more actively, my professional/vocational vows pretty much preclude me from taking full advantage of this particular opportunity for the terminally ill. No straighter or more narrow way to being defrocked than getting disrobed in the wrong company. But hey -- what kind of cruel, cold-hearted soul would deny an individual looking death squarely in the eye a little intimate, tender loving care? And I have it from good authority (link: The Rev A. C. Miles) that "the most common advice dying people have given me is: have more sex."

This whole train of thought got started when I woke up in the middle of the night thinking of an old Richard Pryor routine, the payoff being that if he had his choice between being hit by a bus or dying during a moment of passion in the arms of a beautiful young woman, guess which line he would be in? That's right, the LONG line....

Which reminds me of the punch-line of an even more venerable joke about the man who nudges his wife for the third time on what his Doctor has told him will be the final night of his life.

"Cut it out," she replies. "Some of us have to get up and go to work in the morning...."