Shorn but Not Forgotten - The Director's Cut

Recently me: Long locks shorn by a lovely named Delilah. (I hate keeping secrets). Now I have to get along without slaying thousands with a wrath-filled jawbone just to be popular and get the girl. The fierce Palestine lion no longer prowls the Judean hillside - a legacy of which I am not proud. Spent a lot of time in the Joint, swinging blindly every night, like a drunken sailor, at every shadow - real or imagined - that taunted me and mocked my helplessness. I've grown; but I confess that the impulse is still there for one last feat of brute strength; one last explosive blast of unanswered offense, bringing the house down, once and for all, upon that gobsmacked Philistine crowd!!!! (Show biz...what are you going to do? It's in the blood).

Palestine Lion In Better Days

(Note Well: Some ancient clay tablets were recently found near the hot, new archaeology site of Tel Naugh (pronounced nawg), (1200 B.C.E) adding yet one more amazing dimension to this already distended account of crime, punishment and show biz.  So, for safety's sake, I'll just let our "volatile" hero tell it, and get out of the way:  Translator) 

 "...Well when I heard the "heat" was coming down from Ashkelon so I had to ditch the jawbone and lay low ("on the lamb" meant something completely different back then, and was never used in polite company).  So I wrapped it in a piece of organic Naugahyde, that I had recently found near Tel Naugh (where else?)  It seems like I'm always finding something old, yet useful, around Tel Naugh. Just last year I found a perfectly good ivory toothpick that someone just threw away.  I'm still using it!  (Who throws away a perfectly good ivory toothpick? This world has gone meshugena. No wonder G_d, may his name be forever praised but never pronounced, from time to time wants to wipe us all out in a flood, or a rain of burning pitch hailing from the sky and start all over again. (Hey? - and maybe that's where I get my impulse control problems from?!)

Well I wrap the jawbone in the N-hyde and stick it under a rock that only I can lift, and I forget about it for about 40 days and nights; and it's hot and dry during the day, but slightly damp and cold at night and sometimes cold and dry - you know the kinds of conditions that will eventually keep the Scrolls up in those caves from crumbling, for a couple thousand years, but that's another story. (I never got any credit for my prophetic abilities, either.  My hair could be just below my ears - like a Buster Brown cut - and I could predict a thousand years out like it was yesterday, which is what I just did with the Dead Sea Papers or The Ellsworth Scrolls, or whatever they ended up calling them.)  So I remember where I hid it and go back one night (the occasion? Guess -  Yet another item on Delilah's "Honey Do List" - sheesh). 

Ur-holster (recreation) one of the inventions
that Samson never got credit for.

Anyway, I go back and find that the N-hyde has hardened and taken on the shape of the jawbone. I decide to keep it for the future, so I can hide (no pun intended) it fast when necessary, but it also seems to be a useful way of carrying it around without calling attention to the fact that your carrying a bloodied jawbone in the waste band of your fufu##Enn!cct@ (This word is unintelligible. Translator).  Anyway I decide to punch some holes in it and string it next to my wine-skin  Next I came up with my own name for it - I call it a "holster".  How do you like the name?  I'm not married to it; it's more of a working title.  Since Tel Naugh is close to Ur (of the Chaldees), I was also thinking of naming it "Thee Ur-holster"  Get it?  Have any more appeal to you? (You never know when antiquities are going to come back in fashion.  Tel Naugh could be a gold mine).    I think the whole concept lends a lot of cachee to carrying around the jaw bone of an ass - strictly for protection, of course.  Remember a jaw bone is about a cubit long, and if you don't recall from Hebrew school how long a "cubit" is, then take a look at your arm: there's one cubit.  I've attached a rough sketch (see above) so let me know what you think.....thanks......

Nothing But Rubber Heels

Every Woman I know crazy 'bout an automobile

1957 Chevy - the incubator?

(Shoop be doo-bie shoo bop)

Every Woman I know crazy 'bout an automobile

(Shoop be doo-bie shoo bop)

And here I am standing 

With nothing but rubber heels!

  

Had I owned a car back in my late teen age years, I'd be a father today.  I am not trying to brag or put on the air of a Don Juan; it's just a fact.  Many friends and, by extension, most of the greater Philadelphia metropolitan region probably had their first child in like manner. Although I was willing, the means of production just wasn't there.  And my life is very different today because of it. (Sometimes I forget that there were a lot of normal kids who lived in our neighborhood and who didn't engage so readily in all the behaviors that my friends and I did.  They came over the park, shot some hoops, went home, did their homework and later went to Penn State.  I sincerely salute these guys & girls: They just weren't the crowd that I hung around with.)

When I grew up there were still drive-in theaters.  I saw 2001: A Space Odyssey for the first time with a carload of guys and a few cases of beer (I do not recommend this to anyone who actually wanted to watch the movie - me). Our crowd had an unwritten code that if everyone didn't want to watch the movie, then no one got to watch it. Pop open another beer and fuggetaboudit. I saw the movie Psycho for the first time at the drive-in, too.  It was definitely not a first date movie, unless what you were trying to conceive was a life-long case of post traumatic stress disorder (PTSD) for your date. The drive-in was a place for "dating", necking, underage drinking or whatever.  In Baltimore Catechism terms it was an occasion of sin; however it wasn't a particularly special occasion unless you had access to a vehicle and an unsuspecting girlfriend, which I mentioned earlier, I had neither.    Jonathan Winters did a hilarious routine that summed up the hormone-enthralled guy's point of view called,  Necking In a '38 Ford.  If you want to laugh hard and see one guy's torrid seduction fantasy come to ashes, then check it out. So sometimes, even with the worst of intentions, you could be saved from your most lurid preoccupations.

I don't know what teenagers did before prosperity hit the U.S. and kids could afford to buy cars.  Did they borrow their father's Connestoga wagon, tractor or Brougham deVille (not the Cadillac model) and go somewhere where they would be out of sight, sound and mind?  What about the horses? Could you trust them?  These are things that a guy must consider while hatching (no pun intended) his elaborate plan.

Approx. 19. Propelled by Rubber Heels

No Brougham - No Baby:  I am single and have remained so for my entire adult life. (This is not entirely true but would  require another post to explain.)   It made my life different: I wasn't raising a family, nor feeling extremely guilty about not supporting one.  I was a kid I realize now: immature, self-centered and just wanting to have fun - read irresponsible.  (Although Rosanne's husband, Dan, quipped on the episode, where they thought there might be another little one on the way: "Rosie, we're not Yuppies. We had our kids when you are supposed to: When you're young and stupid.").  In that aspect, I think I was like a lot of my friends; but even when I could afford my first car at 21,  I chose a Volkswagen Beetle. So I think the urgency to spawn had already cooled by the time I was able to make my first car payment.   I was more interested in a political statement, I guess, then any other use for the car.  The VW was "the" vehicle of the 60's generation and its hipness promised fun and adventure along the way.

 Years later, because I did not have these responsibilities, I was free to explore other interests that I had missed for various reasons while younger.  I traveled, went back to college and then to University.   I wrote a little poetry and literature and read or studied a lot of it.  I went back to church, got drafted into the choir, learned I had a voice, and learned to sing all kinds of music - from Bach to Ladysmith Black Mambazo.  Many wondrous things happened along the way, and I've always had the urge and still do, to pass along my "experience, strength and hope" to anyone who might benefit or be inspired by it.   My family were big supporters of my travels and pursuit of education, even at a time when my mother was ailing from Alzheimer's disease, and we were all sharing the burden of her care.

Ireland 1983: On the Road to
Find Out (Still on Rubber Heels)

   In my travels, I started to feel like I was the eyes and ears of those friends who could not make it, or those I had known growing up who had passed, prematurely, and who would never see these places.  At one point I was traveling so much that I was embarrassed to tell a friend that I had an opportunity to travel to India over the Christmas holidays.  He sensed my reticence and said, "No Joe, don't think of it that way:  Whenever you travel, you always bring so much back with you." He was right. So in that sense, I believe, I am still in a generative mode; however the creation that I am involved with originates in the heart or imagination and not in the loins. 

   I remember a friend from my youth,  known more for the trouble he got into than his insights into character, who once asked if I had ever thought about becoming a minister.  I was probably around 16 at the time, and I had considered it and would for years to follow, but I didn't take that road.  I was partly influenced by the words of a  Brother I got to know, who once said, "We don't need another Brother, we need empowered Lay people who live out their faith".  I always thought that was an option that had not been fully realized.  It seemed that if you were "religious", then you should join the Religious team and not clutter up the neat categories of lay and religious that have been laid out for 2000 years.  So in a sense you were pigeon-holed by your genuine interest in service into a safe, well defined category that everyone could live with.  When asked over the years if I was clergy, I would simply reply: No, I'm a civilian.

Holy Heels! Batman

 I discovered that there is a third way and that is to be "yeast in the dough", i.e. to be a somewhat anonymous presence that is "hidden" in the lump of ordinary life.  I have heard it put: to be a friend among friends, a worker among workers, to be a low-profile Christian who simply tries to be an apostle to the every day.  You know in Matthew 25, where Jesus tells the parable of the Final Judgement, the King says:

‘Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world. For I was hungry and you gave me food, I was thirsty and you gave me drink, I was a stranger and you welcomed me,  I was naked and you clothed me, I was sick and you visited me, I was in prison and you came to me.’  The Righteous then ask with some incredulity, "(Er,) When did we do that for you?"  And the King responds that whenever you did it for the least of these (the poor), you did it for me.

My point is that the Righteous were probably so busy doing the right thing that they weren't thinking about whether they even were the "Righteous" and being nominated for an eternal reward of some kind.  They were probably too busy doing the right thing to be concerned with keeping score as many religious (and others) do.  Is it possible to be so caught up with the work, that even you become unawares, i.e. anonymous, even to yourself?  I think so.  

Some Christians of various traditions think this a cop out: If you believe in Jesus then you should be shouting from the street corners, from atop the hills of Chestnut, Walnut or Spruce (Chestnut Hill, Walnut Hill and Spruce Hill, get it? Sorry!), wearing this new found certitude on your sleeve - like a shiny Rolex - for all to see (and  admire?)  It's not me.  If that approach worked I'm sure that there would be crowds of converts on many street corners throughout the city. We'd have to hold Sunday services in the local sports stadiums, and even then have to turn hundreds, possibly thousands, away each week.  Instead what I see is the legacy of an older time where there was a  proliferation of traditional churches, all getting a competitive foothold in the neighborhood and the imaginations of those who lived nearby (although this has cooled dramatically).

Barefootin' It through  Ireland  (1983 )
I been barefootin'
ever since I was three.  We're barefootin'

In my neck of the 'hood there are also many store-front start ups,  burning with zeal and igniting like a brush fire even more and different store front churches (not a franchise), who are burning with zeal and producing even more and varied store front churches.  Little unity, lotta zeal. (I'm not questioning the sincerity of the faith.  I'm just saying how it looks to an outsider.)  And we want to invite others to this profligate fragmentation and  mindless reproduction of the one and only truth?  Thanks but no thanks.  As an old advertising maxim puts it: the less something is worth, the more you have to push it. Conversely the more something is worth, the less you have to push or sell it:  It sells itself.   This idea is expressed in one of my groups as having a "policy of Attraction rather than Promotion".  What faith!  To believe that "the proof of the pudding is actually in the eating", and  not in the selling or yelling about how good it tastes or whether "4 out of 5 doctors" recommend feeding it to your kids.  Our own human experience of what tastes good versus what is ca-ca has been so diminished for so long that we have forfeited our sacred responsibility in favor of  the constant dictates of  our mass consumer culture - even our religions! 

From Whence (or Whom) Cometh my Help?

Good Samaritan (me) helping unidentified hiker with bad boots.

Well that's a heady title in my best King James Version of Elizabethan English; but I do have something interesting and hopefully relevant to say.  Perhaps I could have called it "Entertaining Angels along the Way".  If I used that title, I could have avoided mucking up the language of Shakespeare with my title.  But that's not how I've experienced it, or recalled it over the years.  It's almost as if I heard it once in a psalm but cannot recall the correct wording.  I also possess the tendency to hear something that I thought someone said and interpret it my own way. A Jungian would say that such an incident recalled, whether a dream or a misread psalm, was in itself relevant to the deeper meaning. The songwriter, Tom Waits, called it mis-hearing things.  He likes this because it gives him some creative inroads of thinking beyond the normal arrangement of narrative or verse.  I sometimes experience this on the trolley or El, where so many conversations can be going on at once, so that you only snatch a phrase from the Autobahn of intelligible noise...(to be continued).
Be that all as it may, I need to defer, briefly, until I address another issue that's come to my attention: This blog has been criticized by some for not containing enough "action sequences".  I've been faulted  as well for commencing episodic digressions that leave people hanging in mid sentence. So I guess you can view this as a little "housekeeping" on my part; tying up a few narrative loose ends, if you will, so that I can proceed with my plangent reporting.   I need to finish off..I mean finish up...my saga of hiking woe (see photo above) with my friend, Greg, that I began on the post of June 28th.

Meanwhile Back in the Rockies: 

Beautiful? Yes, but no walk in the park.

When we last left Joe, Greg and Jeanne, Greg had removed his self-inflicting hiking boots and donned his campsite, Birkenstock sandals to continue our trek through the Rockies.  This would make do for the time being, and as long as the terrain remained flat, but was not a permanent solution.  As mentioned good hiking boots support the feet, the feet the body and the body, the 20 to 30 kilos of supplies you need to survive while schlepping through the outback.  Well I hate to be anti-climactic but in the interest of getting this tale over with: Greg was going to bail out when we reached the Canadian border, and the town of Waterton (see map below) where there are stores and buses and civilization as we all are accustomed to.  He would divvy up the supplies between Jeanne & myself so that our vacations would not be completely ruined, while he consulted a Podiatrist about reconstructive surgery. (The Podiatrist, an experienced hiker himself, told Greg later that we were very lucky because a Grizzly can smell fresh blood for great distances, and they have been known to track wounded prey over several mountain ranges in pursuit.  In fact, he said, if it were not for his unique "foot odor problem", we might all  have been lunch for one of  the world's fiercest carnivores. Whew!)  Anyway I digress.. He would meet us in a few days back at the lodge from where we had set out.  This is not exactly what Jeanne and I wanted, but were ready to accept this when in Waterton we all came up with a brilliant idea:  Why not have Greg buy a cheaper pair of shoes with some support - like running shoes or high top sneakers - that could at least get him through the next few days, until we exited the park?

An early attempt to fix the problem.

Brilliant; but because of our budget, buying another expensive pair of hiking boots was out of the question, besides there would be no time to break them in properly, and they would cut and chafe like the other pair.  And, because we had not planned for this expense in our budget, it would mean that Greg would have to go without his share of beef jerky for the rest of the trip.  Greg agreed but immediately started beefing up on the Canadian version of donuts, quaintly called "fried dough".   The photo at left was taken at the fried dough stand (Dunkin' Fried Dough) in Waterton and is used to this day by the Park as a cautionary reminder to novice hikers of what can happen if you don't break in your boots.
Well All'sWell that EndsWell, I guess, and Greg even met a young French Canadian beignet chef with whom he struck up a relationship over fried dough at the Mountie Relief Center.  She did not speak much English, and Greg has never been considered much of a word man, himself, so they got along just fine.  Everything was hunky dory until Greg's weight ballooned to 300 pounds (136 kilo or 21.5 stone for those living above the border) and they had to end their little affair, because he was anything at the time but little anymore.  The End.

Sabbath/Sabbatical: The Baddabing

I don't know about many things these days.  My health has improved as the result of my treatments (2) and people have started to look at me with a quizzical eye.  I'm 30 pounds lighter than I was a few years back, so I've lost most, if not all, of my middle-age, mid-section bulge.  I haven't lost any hair, and what hair remains has been the subject of unsolicited critical acclaim by strangers, as I mentioned in a prior post.

Donny Brasco sighted recently in South Philly after eating his first Baddabing

 I think folks are a little surprised and maybe - just maybe - a little disappointed that I don't have that wraith-like look that many have come to expect of the cancer sufferer.  I hate to disappoint, and thought about staying up a few nights just to increase the dark rings beneath my eyes; but, like fasting, it's easier said than done. You have to have a higher purpose or calling to successfully submit to sleep deprivation, like being on guard duty along the Pakistan/Afganistan border or attending the Philadelphia Folk Festival and trying to catch every act in Schwenksvillistan.  That sort of  faithful vigilance is not the order in West Philly-stan these days (although try telling that to your friends who live in the suburbs or South Jersey and they just continue smiling at you while making a mental note to Google "delusional ideation  during chemo" when they get home), as witnessed by the recent return and production of Shakespeare in Clark Park. Another  overwhelming success, making it their eighth year in the park.

The How-U-Doin deli, home of the Baddabing

In the meantime....I have been applying for work and learning Spanish.  I am surprised at how much I remembered from high school, augmented immensely by taking up French as an adult.  Spanish comes in handy in the helping professions and especially in Chaplaincy. In any case, there are a lot of Spanish speakers in Philly and all over the region, so I thought it might open up a portal to another world for me.

Catherine McCauley, Foundress.

Honorable Mention Section:  Thought I'd take the time to thank a few individuals at this point who have been instrumental to my care and survival around these treatments.  The first is  Catherine McAuley (1778 - 1841)  who founded the religious order, The Sisters of Mercy, in Dublin Ireland.  The reason that I wanted to thank her is for all the great work that the Sisters/nuns did over the years caring for the sick and the poor.  They are the founders of Mercy Hospital, i.e. Miserecordia as we pre-Vatican II Catholics know it, where I currently get my infusions and other medical care.  When I think of the mess that our current Health Care system is in, it's nice to recall the sacrifice and dedication of these Sisters, when things were a lot less profit driven and a lot more humane.  Everyone is very friendly and the pace reminds you of an old fashioned hospital, where you don't feel like an unlucky pedestrian crossing the Autobahn in Germany on a holiday weekend.  The place still exudes the compassionate character of the order.  As an adult you realize the amount of organization and funding, sweat and tears, that must have gone into the construction and operation of this place.  The hospital is nearly 95 years old and has been serving West and Southwest Philadelphia for all of that time.  It is also part of the larger Mercy Health system.  

• I'd also like to thank my "Goombah", Vittorio, who, after the nausea-inducing effects of my last treatment finally abated, took me to lunch at The Famous Deli, on 4th street in Philadelphia (http://famous4thstreetdelicatessen.com/).   The Deli survived the many transitions of the area around South street that had been for many years the "fabric district" and was primarily Jewish.  So after the last round of treatment,  Vito (not his real name) suggested we meet there for a bite.  I was fantasizing about corned beef as my appetite returned en bonne forme (like gang busters - loose translation from the French).  Vito had just the thing to handle this situation and, as I teach my students learning English,  hit the spot.  
  
  

  Replete and restored to my old self by this unacknowledged institution of recovery, I munched on the customary chocolate chip cookie, took my hefty doggie bag and looked forward to tomorrow's lunch.   The Famous Deli was established in the same era as Mercy hospital; so two older institutions were my help and refuge during this time.  Of course the much older institutions of family and friendship continue to sustain me throughout, and allow me to appreciate these welcome strangers and events as they come into my life.  So thanks everyone for your prayers and listening in.  With Gratitude,   Joe

The Original Corned beef Special of which I could only finish half.  That's a side of latkes between the sandwich halves. 

Round2: The Heat Is On!

The Heat has been on for the entire last week of treatments, but I was not so affected until the end of the week.  That's when it all kicks in.  I get my Newlaster shot on Friday, that boosts the white blood cell count to fight off any infection.  As my body responded to it,  I took to bed.  With the heat as high as it was, I stayed safely indoors.  I was able to read but mostly sleep.  I felt slightly nauseous the entire time, but managed to have a little something to keep me from dehydrating as well as taking the additional medicines that I need right now. 
I think that you need a certain amount of physical distance from your own condition in order to reflect on the broader situation.  This is certainly the case with me.  I was wiped out and the only thing you can do when you feel like this is sleep, drink fluids and pray for a change in weather and health.  I am doing very well, considering; but it still requires a few more rounds of the recommended treatment to ensure  remission.
Last night I called a friend who lives nearby and asked if I could come over for a little something to eat.  I told her that I needed a reason to get up, get washed and get out, if just for a little while.  She was very kind and invited me right over.  I was able to have a bite to eat there and just some human conversation.  That helped a lot.  I felt so physically frail from all the treatment.  After that I was able to go back for some more light reading and sleep. 
I was awake for the climactic thunderstorms that broke this 6 day  heat wave.  My quarters are in the finished attic of a bi-level apartment, so I could hear the downpour right over my head.  It was so loud, but so welcome.  I know that they will cool things off significantly as well as water my garden, that I haven't been to in about two days.  The veggies will be happy for such a deep drink and I'll be happy as things cool off and I get out again.

Respite Day 19: The Waiting Is the Hardest Part

Many themes surface throughout my life that have often taken the form of  lyrics or titles from songs that I have known. This post, a  lyric from Tom Petty & the Heartbreakers, is no exception. It best expresses the sentiment of this phase of my treatment and life.  Over the years music has provided me with titles and lyrics that often act as an epigraph to the following chapter from my past. I sometimes wonder what it is about my relationship to pop music as I grew up, and then later on to more serious music and even some gospel.  Like Americans of various generations, music formed  the soundtrack of my youth, young adulthood, middle age and now my advancing senescence (ha!) I do think that music imprints  grooves into the brain and soul that do not simply vanish as the currency of the music fades. I experienced this first hand with my mother's diminishment from Alzheimer's disease.  As her memory was depleted by the disease and the pathways, like washed out roads, failed to reach the destination of mutual recognition and identity, a tune we knew that she liked could reach her, bring her joy and for awhile preserve the bond between child and parent.  Music runs deep, deeper than the ordinary organic circuitry that makes sense of our lives, loves and situates us in place and time. As a Gospel singer once responded to a question regarding the origin of  her music, "It comes from somewhere between the marrow and the bone."

 I picked through Keith Richards' autobiography, A Life, while waiting for a friend the other day in Barnes and Noble.  It transported me to the summer of "Satisfaction" (1965).  I recalled the song's impact and dominance, reigning at number one on the American pop charts for over 6 weeks, which, at the time, was unheard of.  It also had a  length of  3"46 seconds, which subverted the usual manic format of youth radio. as I flipped through the book, mostly glancing at the photos, but secretly feeling the excitement again. It is difficult to express the enthusiasm I had for this song and how it colored the entire summer and my world.  I know now that it was a shared experience of a generation coming of age at a time when there was great social turmoil  in the U.S., in the world, and lest I forget......girls!!. It was a song of youthful rebellion, of an unsubtle sexual frustration , something that parents were sure to dislike.

Keith Richards, Guitarist & Song Writer

  But the best part was the signature guitar lick that introduced the song and would be heard repeatedly, from seemingly 100's of transistor radios everywhere you went, throughout half of that endless summer.  I was 12 years old (going on thirteen, thank you.) and, following the lead of older kids in the neighborhood, was a fanatical Rolling Stones' fan.  The atmosphere of the time re-surfaced in my thoughts,

So I close by asking my nieces, nephews, grands and other family or friends who may wish to reach me at some time in the increasingly foggy future, to bring a ukulele, harmonica or kazoo with you to the old folks' home and recall those few notes that even I can play on guitar.  You don't need to know any of the words, just those 3 or 4 notes that make up  that signature riff, and you'll see my eyes refocus as I mentally step into the "Wayback Machine" and find my way back to that idyllic time somewhere between boy scouts and acne.

Sabbath Day 13: Respite from Treatment

Hi Everyone,  Reporting in from the Fumo branch of the Philadelphia Free Library.  I have some business in South Philly this morning (taking care of a friend's dog....no not putting it down!) and I'm hoping to get some refreshing "real" Italian water ice before I return to West Philly and some more errands.  
So far the great part is that I haven't lost any hair and I feel pretty good.  I have to be careful being out in the sun, which isn't easy on another sweltering day in the city.  I'll take the day, since my tomatoes, cukes and peppers need some uniterrupted sunshine to produce those wonderful fruits.  I have been collecting lettuce, kale, kirby's and radishes from my garden so far.  And peas too, which never manange to get very far from my garden before I eat them.  I have a dark red lettuce called a merlot that is coming in now.  I promise some photos of the bounty later when I get my PC running again. 
I wanted to thank you all for your prayers and offers of support; it is really appreciated.  I'm entering another three to five months of treatment and will try and find some work in the "meantime" to accommodate.  (As I said before: Most of life is lived in the mean time...i.e. between the great events, or those peak experiences of life: birth, graduation, marriage - more birth - retirement and....well you know the rest.)  The meantime is a good time to learn a new language (I'm working on Spanish), take dance lessons, enter therapy (if needed) or update  your resume.   The meantime is a good time to make your own living space a work of art.  Add some plants, a mobile some precious mementoes.  I find that living life can be an authentic art form too.  When you have a serious illness it tends to put things in a new perspective.  What are the truly important things versus the onslaught of tasks that we ususally consume ourselves with everyday?  It's not easy.  Most of my life has been spent either slavishly doing my perceived duties, or running away from them in search of a "Disneyfied" version of reality.  I think the truth is in finding the joy - or the dance - in the midst of the daily tasks which are always with us.  My program also teaches me that serenity and problems are not mutually exclusive; in fact, the art may be in finding our serenity in spite of life's troubles.  Well I guess we will see.

We're experiencing a temporary intererruption.....

Hi Everyone,  Yes.  My computer has stopped talking to me, or at least it's not waking up completely.  Even though I have a background in tech, I am perplexed.  I have a friend looking at it now.
I continue to have good health and await another round of chemo.  My doctor said the other day when looking over my initial results, "We hope for the best and prepare for the worst.  In your case, it's just what we hoped for."  So I'm very happy with the results and also my care.  My doctor's great and the nursing and administrative staff are all friendly and caring.  Perhaps some day our entire health system will be affordable and compassionate.  The initial signs are good.  Let's hope for the best and steel ourselves for anything less than the best.  We  deserve better care.
Hope to be back on line with the exciting conclusion to Hiking in Montana.  So stay tuned.

Sabbath 6: Man, Ain't That News!

The title of today's entry comes from a popular gospel lyric which goes:  Ain't that Good News?  Man, Ain't That News!  Good News is the English translation for Gospel or Evangile, in French, from which we get the words evangelist and evangelical.  Just a little background.  So Good News is good news, but it is also the news of salvation.  I know that many of my friends and family have been ardently praying not only for my recovery, but also for a cure.  I trust prayer: when you are desperate you learn to trust God.   My results from my first round of chemo certainly feel as if they came from above.

Chemo direct hit

     I received the doctor's report yesterday afternoon and, in brief, my White blood cell count (or to be more precise - the lymphocytes) had fallen from a high of 80k to a normal of 8k! (k=1000).  My hemoglobin (red) was normal; platelets, ok;  My spleen that had been slightly swollen and hardened, was now as supple as the shoe leather of my hiking boots (I intend to return to the hiking tale).  My lymph nodes had also shrunk to inconspicuous bumps.  All the good minerals that keep you from getting dehydrated were all normal.  In essence, in bowling terms, it was a dead on, down the middle strike.
I still have another 4 to 6 treatments over the same period of months, so my doctor will keep his eye on the slow or rapid re-accumulation of the lymphocytes in my system.  That is currently the nature of CLL.  It's a watch and wait process.  There are new drugs and even some experimental gene therapy that really look promising, but for now we watch and wait. 

Dynamic Duo

(Meanwhile, back in Montanna, and much healthier days) We like 3 unwitting pack animals had to carry in all the supplies we would need to survive during this marathon of mountain hiking (toilet paper too, and take the trash out with you, thank you).  I remember that my pack weighed around 45 lbs; Greg's 60 lb; and our third member 45 lb.  Greg is larger than both of us, comes from pioneer stock outside of Akron, OH and even played high school football.  He also had the highest quality backpack, designed by Sherpa in Nepal (or so he told us), and could distribute the extra weight evenly across his Paul Bunyan-like frame.   This all rested on the foundation of good hiking boots to support your ankles from bowing as we trudged along precipitous ridges.  The Indian caste system is often described as a physical body with the lowly Sudra (pronounced soo-druh) , the feet, supporting the entire body.  Although lowly the entire super structure of commerce, military and the ultimate horizon,  nirvana,  rest upon the humble Sudra.  Equally important back packing is how well-shod our Sudra are.  About a day and a half out on the trail, Greg's Sudra, or actually his not-completely-broken-in, new hiking boots (pronounced shod) began to cut into the backs of his ankles to which his Sudra are attached.   In the hierarchy of possible problems that you can encounter while back packing in the wild, this ranks just below getting mauled by a grizzly bear, especially since Greg was carrying the greatest amount of weight of the three.  It starts as a rub, then a blister and then after the blister breaks and what follows is blood.  You are on a strict schedule when backpacking in Glacier International Peace park, which is where we were.  There is no wandering off of the path or hanging out an extra night at one of the predetermined camp sites.  This is genuine wilderness where you can slip and fall and not get found for a few days.  There were no cell phones then, so aside from smoke signals (from a propane stove), we had no way of communicating directly with the park rangers.  So, like life, you have to deal with crisis while still on the move.  (to be continued)

Day 7: Follow Up

Today I go back to visit and see the initial results of my treatments.  I can already feel that the swelling in my lymph nodes has been reduced.  My spleen, which is also affected by this condition, has lost some of its hardness that it had only a week ago.  These could be a little subjective, so I will find out more in the way of blood counts and that sort of thing today.

Audie Murphy

   I also have the stitches removed from my "port" which was put in almost two weeks ago.  No small thing.  When the Doctor told me that I would have a port installed for them to hook the intravenous feeds into, I didn't think much of it.  I'd seen patients during chaplaincy that had those little inlets installed around the clavicle.  Didn't seem like a big deal.  I was on the table for around 2 hours, semi-conscious, as they pushed and prodded away to get that thing in right. One part of the port, i.e. the inlet, sits outside where you can see it.  The other part, that is much more delicate, is connected to a major blood vessel inside the chest.    It is another example of my tendency to "minimize" what's about to happen to me.  An old character trait that came in handy during fires or major earthquakes, "Don't worry, the hazmat guys will be here in a few.  We're safe now."  I have that calming assurance that someone who knows what's going on possesses.  However in my case, I'm one of the kids that should be scared s---less by the entire situation.  "WHAT THE f---! WHERE'S THE GROWN UP IN CHARGE!!!!!  I never saw the usefulness of taking God's name in vain in order to lessen my own panic.  What if we were all done for, anyway?  Would it help going into the after life with a freshly minted expletive the last thing I spoke while on earth?  No, I think St. Peter would probably ask, "Who was in charge of this unit?  Good job, son!  Tough break, though". Or something  recognizing my ability to stay poised under extreme fire like Audie Murphy, who lived long enough to star in a few movies about himself. (By the way, the rest of Audie's medals are on his formal jacket that, at the time of this photo, was still in the cleaners.)
The ability to stay calm requires omitting certain important details to yourself about the crisis at hand.  For this reason, my good friend Greg goes with me to hear what the doctor really said and even to take notes for me to refer to later.  Greg and I went backpacking many years ago in the Montanna Rockies.  He was the man in charge. He had experience backpacking in the wild, or so I thought at the time.  He emphasized how important it was to break in new hiking boots before the real test.  I bought the boots early and saddle soaped the new stiff leather into supple compliance to the contours of my city boy feet.   He put me in charge of the food: 3 people X 3 meals a day X 6 days back country.  Ok...54 meals.  I got it.  I had to buy a backpacking manual to find out what you can make out there in the wild when you are not aloud to take a grill or build an open fire.  I discovered that everything you carried in with you; there were no trading posts or chuck wagons or any of the other things one might find in a story book or TV tale. And so it didn't weigh a ton, it was all freeze dried: Turkey Tetrazinni, Beef stroganoff, Tuna Noodle surprise, etc...  Along with the freeze dried stuff, there was peanut butter, jelly, coffee, tea, honey, powdered milk;  everything taken out of their original glass jars and put into plastic squeeze containers.  I guess it was a little like the astronauts, eating food out of tootpaste tubes. (I will have to continue this tale in the next blog entry, because stolid Greg is picking me up in 20 minutes for the appointment. So Ciao for Now.)

Fifth Day of Rest (Sabbath): New Connections

Just as a reminder to new folks coming on, here is a review of my health status and the basis for this blog. I was diagnosed a few years back with Chronic Lymphocytic Leukemia (CLL), a condition that is often not treated but observed to see if it or the symptoms become serious.  Because I was out of work and had no health care for a lot of that time, I stopped getting the monitoring that it required.  In the meantime (most of life, after all, is lived "in the meantime") I started to experience some disturbing symptoms.  I eventually went to the Health Center in my neighborhood and received some good treatment there.  As one  nurse told me at the time, "Not having health insurance is not a reason to go without treatment," as I discovered to my relief.  I was treated with dignity and efficiency at the center, and I have only good things to say about it. 
After seeing an Oncologist at Mercy Hospital, he decided that a course of treatment should be taken to reduce the swelling of lymph nodes in my body and bring down my soaring white blood cell count.  Since I have virtually no income, I applied for Medicaid and was granted it - thanks to the hospital administration - in what must have been record time. 
The course of treatment is 5 days of treatment - mostly chemo - followed by 23 days of rest, to be repeated 4 to 6 times (months).  As of this date I am in my 5th day of rest or what I call the sabbath or sabbatical, following my first round of treatment. 
Prognosis after treatment is  3-5 years of remission, accompanied by regular monitoring to ensure it is not taking over again.

Further Information about CLL

Day 4: Treatment (June 20th)

• • 
    

    Day 4: Printed out some recipes to take to the sisters today at the Infusion Center. Sounds important - Infusion Center - and it is. Great staff, working hard, and trying to manage a fairly complex environment, while staying calm. I was not very calm, but a bit agitated yesterday morning. I had a lot on my mind, but was focused more on what annoyed me in the center. Everyone has a personal TV and we're only separated from each other by cloth curtains, so the noise of two or more TV's can be on at the same time. The elder nature of the patients, including myself, often calls for higher volume to compensate for losing some of the high range of  hearing, that comes with age: It is loud. I thought personal headphones might do the trick, but in the meantime, I got more agitated by the rising cacophony. I thought of the word hospital, hospice, hospitality - all related words and concepts leading to or springing from the central idea of healing and possibly rest.

    I have to watch myself at this point because I have a slightly snobby disposition and become indignant if everyone isn't watching or listening to something culturally relevant like NPR or PBS. I show my flag hear, but the underlying impulse is trying to correct everyone so that they behave in a more acceptable (like me) manner. I am reminded of a short story by Flannery O'Connor that epitomizes this same, haughty confrontation in a doctor's office in a small town somewhere in Georgia. The nice people are intermixed with the "colored" and the "white trash" or simply, trash, as she refers to them in her mind. We hear the women's thoughts and sometimes her words crafted to communicate to the other respectable whites in the room, her extreme disapproval of the children's unkempt appearance, blank stares and mostly lack of manners. The other respectable people in the room get her reference, while the targets don't usually rise up to the heights of this surreptitious discourse. They are used to being contemptible in the eyes of especially, their betters, because they happen to be white, yet poor and uneducated like their fellow "coloreds". So our respectable Towns person has nothing but contempt for her "fellow" whites, they somehow, by virtue of their skin color, ought to know better. 

    

     

    My recovery literature specifically talks about this habit of character as being a subtle form of anger, ie annoyance. We feel superior to those people who annoy us, and we get some satisfaction from that sense of being "better than" them. The literature and my faith tell me of the dignity of all people regardless of their origins or their current situation in life. I don't have to look too far back in my own life or that of my family's to see the need for a scapegoat, someone or something to blame to get the glare of scrutiny off of my own self and that of my family. I felt ashamed of them all, myself included; so keeping afloat in what I assumed was "normal land" required constant propping up of myself in the eyes of the "dignified world" by putting down others. 

     Distinctions: I felt compelled, always distinguishing myself from my "lessers" - at least in the privacy (and indecency)  of my own mind, and this was a full time job. In a loving and patient way I learned from my experience of Recovery to look beyond the surfaces and discover the person inside. I learned patience, reserving judgment, examining the judgments that came so readily to me. (Why was I so expert at these? I was the Quickdraw of judgments it seemed.) And then I heard someone use the slogan, "If you spot it, you got it!" God forbid, but it was true. Some of the same things I so readily judged others by I was familiar with myself. "Familiar" comes from the word family, so it's like recognizing someone by a shared trait or look. Was this my new family? I was taught to try to identify and not compare or judge my fellow human beings. This had a secondary and beneficial effect of releasing me from the clutches and the claws of the real or imagined folk that were always judging others, possibly even me, when I was not around. This habit of mind became less habitual; I learned how to pray for people who I didn't understand, not in a self righteous way, but in a real way. Many of my new fellows and friends in recovery were, by their own admission, quite contemptible before finding their way there. So a smile, a nod, an attempt to try to "understand than to be understood" is what is becoming habitual for me.

     The sisters arrived with a smile and hug for me, and I presented them with the small collection of recipes that I brought them. I remembered to include my email to encourage them to return the favor in kind, not for payback, but simply the further spreading of the joy. I've included it in the post to you who are my family, too.

     

Day 2: Treatment (June 18th)

Day 3: Up at 5:00 am. I think that the steroids that they have been giving me are affecting my sleep cycles. So I do my blog and a few other things too. The sisters who I met yesterday were both fine cooks and we talked alot about food and recipes. Although we were people who might never meet or talk otherwise, I find that Food is another "universal" that gets by our radar for ethnicity, gender, age, race. We all love to eat and it is another form of intimacy we share when we sit to "dine" with others who enjoy a repast as well as we do. From traveling to Europe I heard this critique: In America we "eat" in Europe they "dine". It's true: they stop everything in the middle of the day and have a 1 to 3 hour lunch break where you enjoy the main meal of the day with family or friends. I guess this is a form of "socialism" where everyone gets to see their family around the table for at least one good meal. Sounds like good ole Traditional Family Values to me. In any case I'm attaching a list of favorite summer recipes that help me deal with all the extra produce from my veggie garden, but can also be bought at the local super market....mostly. I shared a link on Facebook with most of you. I'll get to the rest of you later once I figure all this out. Joe (6:38 am)

Summer Recipes 2013 

Day 3: Treatment (June 19th)

Day 3: Up at 5:00 am. I think that the steroids that they have been giving me are affecting my sleep cycles. So I do my blog and a few other things too. The sisters who I met yesterday were both fine cooks and we talked alot about food and recipes. Although we were people who might never meet or talk otherwise, I find that Food is another "universal" that gets by our radar for ethnicity, gender, age, race. We all love to eat and it is another form of intimacy we share when we sit to "dine" with others who enjoy a repast as well as we do. From traveling to Europe I heard this critique: In America we "eat" in Europe they "dine". It's true: they stop everything in the middle of the day and have a 1 to 3 hour lunch break where you enjoy the main meal of the day with family or friends. I guess this is a form of "socialism" where everyone gets to see their family around the table for at least one good meal. Sounds like good ole Traditional Family Values to me. In any case I'm attaching a list of favorite summer recipes that help me deal with all the extra produce from my veggie garden, but can also be bought at the local super market....mostly. I shared a link on Facebook with most of you. I'll get to the rest of you later once I figure all this out. Joe (6:38 am)

Summer Recipes 2013 

Day 4.5 - My Hair

Day 4.5: My Hair: Well I wanted to get real serious here and so I thought that I'd get right to the point,,,losing hair. I'm not sure that we Clarke's ever had a bald gene to contend with. I saw some of our elders get thin at the top, but never bald. Even my in-laws that I can think of had full heads of hair (although some were carriers of the bald gene). Regardless, it's my hair I wanted to talk about and it doesn't have to do with heredity but chemo.

Not my head, but could be.

I started to grow my hair long on more of a hunch than a finished idea. I saw photos of some guy celebs who were around my age and who looked good with their hair long, so I started heading in that direction. Iwas assisted my my current stylist, Heather, at the Talking Headz salon on Baltimore Ave. I gave her the idea and she soon "got it", and that was it.   After awhile, I began to feel a little ridiculous at my age with such a stylish cut, and I thought about getting it all cut off, so I could fit comfortably back in to the "normal pool" of self judgement and regulation. I was a chaplain intern at Einstein and visited many people in their rooms. When I was on the verge of getting it all cut off, I visited an elderly woman on my assigned unit. I was going to bypass that room that day, because it was not a requested visit, so it was not assigned to me that day. Because of her age, 88, I thought that she might, like others, be partially impaired with dimentia and so our communication would be limited. (My mother passed after a long illness with Alzheimer's as some of you already know.) I went in anyway and this woman was, as my father would say, "sharp as a tack". She was perfectly lucid and on fire, i.e. she had a real spirit and zest for life. After greeting her one of the first things that she remarked was "Your hair is beautiful"! I thanked her and tucked her vote to "keep the hair" away.
One thing about talking with some elderly, they care less about what other people think and just tell you openly what they think. It cut through a lot of my self doubt about my job, profession, self, etc. I felt that it was coming more from the other side, if you will, through this woman of great but practical faith, "I don't know how people can get along without God", she said. She wasn't preachy, just matter of fact; that's what I mean when I say a practical faith. I listened closely and I was the one who was comforted and strengthened by that visit.
Since then I've had people come up to me on the trolley, even yesterday while going to the Infusion Center a female guard remarked, "Your hair is beautiful". It has become another ice breaker if you will, to simply talk about something human, and to get beyond the formal. I give the credit to Heather whenever I can: She's the stylist. I simply grow the stuff, which is now all gray. She helped me out because I was out of work, and eventually we worked out a deal that I helped her set up a veggie garden behind the shop and she'd cut my hair for free. As of today,it appears that both the garden and my hair are doing fine. (I will post a photo of the Garden tomorrow, so stay tuned.) The treatment that I'm going through may thin my hair, but we'll see. I've always been philosophic about my hair: There's always more where that came from and, as long as I have Heather to shape it, we are (as my father used to say) in business!

A Phrenologist's View of the scalp

Day 6: June 22nd - The Day After

Day 6: Feeling a little nauseous and weak today. I guess the chem's are catching up and doing their thing. My treatment continues to go well with a booster shot yesterday to re-stimulate white cell production. Most of the week the treatment was designed to break up the overload of white cells hanging out in my lymph nodes. Yesterday's shot was to re-stimulate, hopefully, good healthy ones that will keep me from getting little infections.
I am overwhelmed at the moment by the outpouring of generosity and care that I have received from friends and family. It has allowed me to even consider to trust G.O.D. in all things. I abbreviate the deity's name not to be funny or cagey, I guess, but simply to acknowledge that there are many different people, with many different concepts and experiences that I would like to acknowledge. In my program we often use these abbreviated forms to express stages (training wheels?), or characteristics of the Deity that we can grasp at the time of crisis. This G.O.D. stands for the Gift Of Desperation! (What the hell could that mean?) I mean, it is not exactly the comforting image of the Good Shepherd (Psalm 23) that I have read to myself and my patients over the past year. No, this God is the one you meet when you are stripped of all of the niceties that you/I usually cling to for our dignity and autonomy - of sorts. He's the One we grasp for when we've already been under 2 times and are going down for the 3rd and final time. He is depicted in Leonard Cohen's song, Suzanne, Who sadly looks out at humanity and declares that "all men shall be sailors then, until the sea shall free them."
I am currently reading two books about this: one is titled, Learning To Fall, and is a memoir written by a youngish, middle-aged, father and husband who is suffering from ALS or Lou Gehrig's disease. The other I'm reading with my small faith group and it is titled, Falling Upward: A Spirituality for the Two Halves of Life, by Richard Rohr, OFM. I will say more later when I have more energy.

Deacon Blues - June 25th

Fourth Day of Rest:   As you all know, I completed the first round of treatment and have been granted a long sabbath - or rest - to recover. Twenty three days to be exact. What is so hard on the body that it takes 23 days of rest to recover? Well the chemo, I guess. Even with this hard information and my own body's weakness, I still thought that I was able to work a shift last evening at a home for formerly homeless men. It is not a physically demanding job, but it involves traveling half way across the city by public transportation to get there. I needed the money, so thought I should do it. Bad idea. I discovered while on the phone with a friend that I was exhausted. I needed to be home resting, keeping it as simple as can be. I thought that I could simply rest, play on the computer, work on my blog-switch while earning some money. I think that it made me feel less dependent, less in need of the help of others, more in control again. Again, the treatment requires much rest and recuperation after each infusion.
I never wanted to remain dependent on anyone for anything. I started working when I was younger than paperboy age, selling pretzels from house to house during the summer. Younger still, I had a job walking the neighbor's dog for a dollar a week. Some on this list helped me deliver my Inquirer paper route when I was around 13. Some sold papers with me on the beach in Wildwood during my family's two week summer vacation there. Each day's wages were usually spent that same evening on the boardwalk with friends. It was fun, but it was a source of anxiety, too.
Today I will go and apply for temporary disability at the Social Security office. I will also apply for food stamps and whatever help with the utilities that I can get. I have never in my life been in this position before and so it is embarrassing. I have helped others - clients and friends - to get this help when needed, but never figured myself as ever needing it. It is humbling, and I know that the challenge in life is to "play best the cards that life deals you." So far, I have played them reasonably well, keeping myself afloat in the "normal" boat with the "haves" or the winners. Now I am in a different position. I learned through my medical treatment that the Health Center and the Hospital provided me with good care that I could afford. Now I need to take a few further steps and face my own pride. I guess when you ask for help, your own business to some degree becomes public knowledge. Maybe that's why it's so hard asking. I've worked with seniors or the elderly who rather than ask, do without food, proper medicine and other necessities. Ironically, they end up getting sicker and in need of more serious interventions because they wouldn't ask when they really needed it. Sometimes they lose their homes and/or their autonomy because of this fierce stratagem. I understand better their need to be independent, even when they really need assistance. I understand the fear that supports their position, but know its folly as well.

Steely Dan

I always liked the chorus from Deacon Blues by Steely Dan which I'll repeat here. I don't always claim to understand the lyrics, but appreciate them anyway. 

So here to conclude: 

They've got a name for the winners of the world
I want a name when I lose.
They call Alabama the "Crimson Tide"
They call me Deacon Blues.