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)

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    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.