A New Year. A New Life.

A few minutes ago, Judy asked me on the phone how I was doing.

I feel the opportunity and the burden of a new year, I replied.

I still have a few things to wrap up from last year: my ongoing digestive issues, mailing the Christmas presents I bought in Ireland to my godchildren, some paperwork. It's also time to wrap up this blog.

I've been waiting for some obvious stopping point - some moment I could point to and say "Now! Now the ordeal is finally over." Every story has a beginning, a middle and an end, so where is the end of this story?

It just doesn't seem to be working out that way. No moment is the full final ending. I've watched my diagnosis anniversary, our trip to Paris, our trip to Ireland, Christmas, and New Year's Eve all come and go without any one of them being "it".

Maybe there isn't a big finish.

Maybe I have to just stop.

Even with that, I'm inclined to conclude with an all-encompassing summary - some pithy observation to mark the transition from the 14 months just passed to the rest of my future life.

But I don't have one of those, either.

I know my life won't be the same, but it wouldn't have been anyway. I can foresee plenty of good things, and I can be anxious about plenty of contingencies and hurt.

So maybe, the best thing is to end with an old cliche. It's a prayer of sorts - a wish, a hope, a strategic plan. It's not very original, but then, novelty is sometimes an over-rated virtue.

So here it is - the big finish:

They all lived happily ever after.

One Year

One year ago today, I received my cancer diagnosis.

I'm having a little trouble with the term "cancer survivor," though I'm not sure exactly why. I had cancer. I'm surviving.

Maybe it's because surviving seems to be setting my sights too low. I remember weeks, days, even hours and minutes when survival was about all the target I could muster, but now I want more.

I want to be fully engaged. I want to live with grace. I want to perform with abandon - both on stage and in the law. I want to give generously. I want to make a difference in the lives of the people around me - and not just as an "inspirational" cancer survivor.

Maybe it's because I still resent the cancer too deeply and too personally. I don't want to yield any part of my identity or personality to this trauma. I don't want to embrace what I've become, both good and bad, because of the cancer. I want to celebrate what persists in spite of it.

I'm pretty sure that's the wrong approach. I've got to live with the bitter effects - continuing digestive problems, physical and emotional scars, lost time - so I might as well make the most of the sweeter effects, whatever they may turn out to be.

I am hopeful.

There is only a very thin line of the chemo induced discoloration left at the very tops of my fingernails. My hair has grown back fully. Some of it is even dark. All of it is curly.

I'm exercising two or three times a week with a generous friend who keeps me at it, even when I'd rather not.

I'm working. I had close to a month of full and effective billing days, before a week of vasovagal events knocked me off kilter again. But the ramp-up is going much quicker this time.

Last weekend I played the Richmond Highland Games & Celtic Festival with my band. Last year, the RHG&CF was the last thing I did before my endoscopy and diagnosis. Tonight we'll play our annual Hallowe'en show at Rare Olde Times Pub. Last year, the Hallowe'en show was the first thing I missed because of my diagnosis.

In a couple of weeks, I'll turn 41, and the odds are pretty good that I will not be in a hospital. After that, we'll take the family trip to Ireland that we missed last year.

I'm spending less time planning my funeral, and more time planning my life. This week, I'll propose professional goals for the next year, and work with the Firm leadership to pick targets that are both aggressive and achievable. In a ridiculously far-sighted project, my son and I are working on building a wine cellar in our basement. Laying in wine means at least some part of me must believe I might have at least a decade or two ahead of me.

Reluctantly, I want to admit that there are some things that might be better now, than a year and a day ago. I've said many times that I have not noticed that the grass is greener, the sunsets brighter or the roses sweeter. I still haven't. I always appreciated my life and my world.

But I have to say my regard for people is even higher. I've always liked people. I'm an extrovert and I get recharged in the company of others. But as a lawyer, as the son of a law enforcer, I've always been aware of how people could be at their worst.

This year I got to see people at their best:

• Dedicated medical professionals giving, not just their work hours, but themselves, fully to the care of people who cannot take care of themselves.
• Devoted family and deeply loyal friends, sacrificing time, exerting effort, sharing pain & sadness, giving love, hope and joy.
• Generous partners, colleagues and co-workers, carrying their own load along with mine so that my family and I could focus on healing and persevering.
• The people of God, clergy and laiety, in my own church and many others in many faith traditions who, in the words of my Quaker friends, "lifted me up," to make a miracle possible for me and my family.
• Perhaps most astonishing were the many neighbors, acquaintances, even strangers who reached out to us with prayers, encouragement, food!, and faith.

I've never heard of any economic, sociological, philosophical or theological model that adequately explains the human capacity for good.

The best we can do are stories. Here's one:

After the 9/11 bombings, we all heard news reports about how the outpouring of gifts and relief to the victims of those attacks had created an unanticipated strain on local charities and service agencies, who saw a precipitate drop in their own support. Encouraged by our friends, the band decided to create a charitable opportunity for the people who come to hear us play. One Thursday each December, we do an all-request show. Each request must be accompanied by a donation to Freedom House, a local agency that serves many of the most desperate and destitute members of our community. The heartfelt gifts of our audience have always been graciously accepted by Freedom House, and used to further their good works.

This fall, I received a message from Freedom House, saying that the board, staff and residents had been following my ordeal, and that they wanted the proceeds of the annual benefit show to go back to my family and me.

Of course, we gratefully declined the gift. But, I was stunned that these good people, whose mission and need is so broad and so deep, for so many of the truly needy, should even consider the welfare of one guy, who has, frankly, already had way more than his share.

So, I've decided to do more than survive. I'm going to live. I've got too much left to do.

Impulse to Guardian - Part 2

Most of the people I've talked with, especially those who’ve known me well and long, seem almost amused that I was surprised by my impulse to guardian. While I had not recognized this in myself, almost everyone around me took it for granted as a major part of my personality.

As I examined my life with this new lens, I was struck by numerous memories that either supported the hypothesis, or took on new meaning or clarity in its light. The memories did not come in any discernibly orderly manner, and, similarly, I record some of them here:

• When I received the diagnosis of my cancer, my first reaction was that I was dead and disappearing. My second reaction was gratitude that, if cancer had to hit my family, it had hit me, so I could absorb the full impact and protect my wife and children.
  
• Later on, in an episode of seemingly uncharacteristic selfishness and cruelty, I told Judy that my death from cancer would be worse for me than for her because she would be losing only me, but I would be losing everybody.
  
• My greatest regret about what I perceived as my impending death, was that I would be absent from and unable to protect and nurture my children to adulthood.
  
• I had (and still have) trouble praying to God because of my anger at Him, but I prayed to many saints, both canonized and personal, to ask for their intercession. Prominent among these was always St. Joseph, to whom I have long felt a particular devotion. Joseph is the patron saint of fathers and the guardian of the family.
  
• I remember as a very young child (5? 6?), being told by my parents that I was responsible for the other younger children in the room, including my siblings and the children of my parents’ visitors. I evidently took that to heart.
  
• I remember as a seven year old, “firing” our Japanese au pair, Hisako, for sending my 6 year old brother outside in his pajamas for misbehaving at the dinner table. It was several weeks and for a different reason before my parents fired her, but I felt my action was ratified by their subsequent action.
  
• I remember becoming fearful of terrorists as a third grader, after a school trip to a Brussels chocolate factory was cancelled because of terrorist activity in the city.
  
• I remember as an 11 year old being terrified, after my brother and I accidentally broke the glass on the front door of our home, that terrorists or other bad people would be able to get in.
  
• I remember, in grade school, being interviewed by a Belgian television crew for a documentary about American kids in Brussels. The interviewer was persistent in trying to get me to say what my father’s job was at the embassy. I was polite, but non-responsive, saying only that he had an office with a secretary and a typewriter and that he often talked on the phone. I also remember being praised for and proud of my deliberately obtuse performance.
  
• I remember befriending, in third grade, the most outrageous kid in our class because I thought he needed a friend. Often, he needed actual physical protection from the other kids in the class.
  
• I remember my mother having to physically push a gypsy out of the front door of our house in Paris as the gypsy was trying to push her way in.
  
• I remember my brother being accosted by a crazy man on the streets of London when we were visiting as a family when we were kids, and my father having to shout him away from us.
  
• When I was in grade school and high school, I sometimes got into violent fights, even though I was a very well behaved child in every other respect. This had always puzzled and frightened me. In retrospect, I realize that most or every incident was immediately preceded by my perception that someone else was being picked on unfairly and by my deliberate interference.
  
• Judy reminded me that I used to say that a dog is a guardian for the home. I did not mean as a guard dog against prosaic intruders, but as a guardian against evil. When I began going through chemo and being hospitalized, I started talking about getting a puppy. This would have been a stupidly impractical thing to do in the midst of my illness, but now makes perfect sense as a response to my fear that I couldn’t and God wouldn’t do the job.
  
• I remember, when we were first married, Judy and I agreed to chaperone a group of teenagers from several Richmond parishes to World Youth Day in Denver, where the Pope would make an appearance. I was great with the kids, quickly recruiting the more rambunctious boys to help keep the group together (or guard it). I also remember losing my temper only once, and extremely, when one of the girls in the group – a college student not much younger than we were – slipped away from the group without telling me, when I was trying to collect everyone to get on a bus back to our hotel.
  
• I remember several years ago, describing to a more junior lawyer in my firm my perception of a lawyer’s relationship to his clients. I said that we were like guardian angels, that we were supposed to protect them from risks and dangers that they could not anticipate, and help them to achieve their objectives.
  
• I remember the great comfort I took in the angels depicted in the architecture of the day care center where we placed our first child when Judy went back to work. The center was at St. Joseph’s Villa.
  
• I remember scores of conferences where I eschewed seating to stand in the back of the room so I could see everything that went on, and be ready to provide whatever help might be needed.
  
• I remember numerous instances of stopping halfway across a street to stare down an approaching car so the rest of my group could cross in safety.
  
• I remember, after being discharged from the hospital after my surgery, getting up to check the doors and windows each night, even after Judy or my father had assured me they were locked, even when I was physically hard-pressed to walk down the stairs to do so.
  
• My most frustrating dreams have always been that I had missed something – usually a semester of classes in law school. My most terrifying dreams are of intruders in the house, on the roof, outside my bedroom window.
  
• A couple of years ago, I went through a mentoring process with Gary LeClair, a founder and the chairman of our law firm. One of the first things he asked me to do was list my strengths and weaknesses. At our next meeting, I tendered the lists. He refused even to look at them, saying instead that I should write them over in two columns on one page, matching each strength with a weakness and each weakness with a strength. He noted that anywhere I had a blank – a strength without a corresponding weakness or the other way around – meant I had a gap in my understanding of myself. At the time I thought it was a cute trick. I completed the assignment and never really thought much about it after that. But once I began trying to work through my impulse to guardian, it came back to me as extremely important. The impulse is part of my character. Much of my strength and power comes from it. But it also makes me vulnerable, especially where it imposes a duty that is impossible for me to fulfill. Like preventing cancer or evil. I don’t need to eliminate the impulse to guardian – I need to manage it. I need to recognize when it is creating an untenable situation and rethink my duty and my capacity.
  
• Dr. John said that this impulse to guardian must be a terrible burden, even more so when I was just a boy. My immediate reaction was that it was not just a burden, that it was also a privilege. I stand by that.
  

I realize that I am now at the beginning of a process of self-discovery and healing, not the end. But these revelations have already given me enormous relief. I can sometimes recognize my impulse to guardian as the immediate cause of physical stress symptoms in very particular instances. Recognition doesn’t make the stress go away - yet – but it somehow makes it easier to bear.

Being able to see the obstacle in my path, instead of banging my head repeatedly against an invisible wall, is a miracle for me. No matter how big the obstacle is, if I can see it, fathom it, size it up, then I can get hold of it, tear into it, break it down.

I realized months ago that the most important thing I had to do was recover my old optimism. I tried smiling more and looking on the bright side and counting my blessings, but I was missing one critical thing. Something I have again now for the first time in an age: hope.

It would be easy, and wrong, to react to the fruitfulness of this new hypothesis by concluding that it is a complete answer to the question of my life. It is big and important, but it is not all of me. It’s not enough for me. It’s not enough for anybody.

As Judy and I were discussing this revelation, even before we left for France, she managed to draw out of me what I thought a man should be, what I think I as a man should be. I thought about it and said that it wasn’t very complicated. I think I should be like the king in Beowulf. (“Hrothgar,” Judy reminded me). A king, a man, should protect his people, have an hospitable house, and be a generous giver of gifts.

That would be enough for me.

Impulse to Guardian - part 1

I have been working with a psychologist, “Dr. John”, for several months in an effort to overcome some psychological effects of my diagnosis of and treatment for esophageal cancer. Prominent among these effects were persistent, all encompassing fear and an inability to concentrate on my work as an attorney. In particular, while I could meet and interact with people, and respond and react to questions and other personal stimuli, I could not concentrate on anything analytical, especially written legal documents.

I was disappointed with my progress in psychotherapy. Each week, I wondered if I should conclude my course of treatment. Each week, I decided to give it one more week. If I wasn’t making progress, at least I had someone to tell my frustrations and fears to, other than my wife.

I was also dubious about the direction of the therapy. Dr. John seemed particularly interested in what he perceived as my anger, and in my perceptions of my father as “an undercover superhero.” I believed I was not angry, but fearful, and that my relationship with my father was a Freudian cliché, unrelated to my cancer issues.

Nevertheless, I’m a great believer in expertise, and if psychotherapy wasn’t helping, it certainly wasn’t hurting, either. More importantly, I wasn’t making much progress on my own. I’d begun to wonder whether a full return to the practice of law and an embracing posture toward life would ever be possible for me again.

Accordingly, I continued with the therapy, and agreed to try a technique using eye-movements and referred to as EMDR. http://www.emdr.com/briefdes.htm On the Thursday before Labor Day, 2005, I met with Dr. John Lynch to try a session of EMDR.

Before we began the EMDR, Dr. John asked me, as he had several times throughout my treatment, what it was I was trying to accomplish. As before, I said I really wanted my old life back. This time, though, I acknowledged that for now, it might be enough just to recover enough function to be able to practice my profession as a lawyer. We talked a little more about my objectives, and about his respect for my wishes and insights. I emphasized that, notwithstanding my disappointment at the slow progress, if I had any better ideas, I’d certainly have let him know.

Beginning the EMDR session, Dr. John brought a chair close to the sofa I was sitting on, and asked me to move to the end, close to his chair. He asked me to remove my glasses. He brought his right hand up in front of my eyes. The first two fingers of his hand were extended close together, with the thumb tucked alongside the palm and first finger. His third and fourth fingers were folded into his palm. The effect was like the hand of an ancient pope or saint held up in benediction.

He moved his hand slowly toward my eyes, asking me to stop him when it got too close. I am very nearsighted without my glasses or contacts, and I did not stop him before he stopped himself. He then moved his hand back out a couple of inches and asked if I was comfortable with that distance. I was and we began.

He first asked me to think of a place where I felt safe and comfortable. I described the chair in my living room, by the fireplace, with the musical instruments on the wall, the harp and piano across the room, and the windows to the front porch and the side of the house. In fact, I’m sitting in the same chair as I write this.

He asked me to imagine myself in this place while watching his hand move, just with my eyes, without moving my head. Then he moved his hand back and forth in front of my eyes for 15 to 30 seconds. Then he asked me what I’d thought about or felt during that time. I replied that I wasn’t sure. We tried this a few more times. Each time, my answer was some variation of “I was wondering if I’m doing this right.”

After a while, he asked me to visualize and feel the “braced position” I had described in earlier sessions as representative of my mental and emotional posture. We did the hand movement thing a few more times. Again, I couldn’t really focus on anything but my questions and doubts about the process.

Then he took a different approach. He said he was going to start a sentence and that I should finish it. He said something like “This happened to me because . . .” Then he did the eye movement thing while I reflected on the sentence. Then he repeated the sentence and asked me to finish it. I just said I didn’t know. We tried a few more times with the same result.

Dr. John said that he was going to give me some examples of the ways people sometimes finished the sentence, that I should not adopt those words, but use them as examples. He said things like, “This happened to me because I’m bad.” “This happened to me because I’m not worthy.” This happened to me because of something I did.”

By this point, I’d become genuinely frustrated. We did the eye movement technique while I reflected on his examples. Then he asked me again to finish the sentence.

I said something like: “I don’t know. I don’t understand. I must have missed something. I thought I understood the rules, but it’s like I missed a subsection. This happened because I wasn’t vigilant enough.”

This answer surprised the hell out of me.

It also, finally gave us some purchase, and revelations really started to flow.

I don’t really remember all the steps from here, but I remember ending up persuaded of a few insights that were frightening and surprising:

• That some part of me believes I got cancer because I had not been vigilant. That in my reading of the rules of the cosmos, something had slipped my attention, making me vulnerable to this attack.
• That I believe a substantial portion of my reason for existing is to be a guardian for my people, and that my people includes a dauntingly huge population, including my family (both nuclear and extended), my clients, my partners and colleagues, my friends, my neighbors and my acquaintances.
• That my failure, through inattention, to protect myself from cancer, casts into grave doubt my ability to fulfill my duty to be a guardian for others.
• That I believe that most people and things are fundamentally good, but that there is a dark, hidden world of immense danger and evil from which my people need protection.
  That God and I were supposed to be partners in this guardian duty and that he let me down.
• That part of my duty as a guardian is to shield my people even from the knowledge of their peril, and so my guardianship should be largely invisible.
  

My first reactions to these insights were surprise, fear and anger. I did not have any conscious conception of myself in these terms. I saw myself as an easygoing guy who likes people and likes to be able to help. I consciously saw the world as a great place to be, where good things just tended to happen to me and the people in my life. I was surprised to find these other tenets lodged in the foundations of my personality. It was like Bruce Wayne discovering to his surprise that he is Batman.

I was fearful and angry because I could not see how these revelations were the least bit useful, even if they were, as I could not contest, “real.” Moreover, I had just learned that the basis for my whole life, my successes as well as my weakness, was largely untenable. It was not the least bit clear to me how this type of self-understanding could be helpful.

Dr. John cautioned me not to jump right to trying to find the solution, when we were only just beginning to uncover the problem. I was leaving for Paris in 5 days, and tried to set an appointment 2 weeks after my return. Dr. John insisted that I see him sooner, and we settled on the date two days after my return.

I spent most of the rest of the day reflecting on these insights. I was “testing the hypothesis” against my recent experience, and using this new lens to examine my life, both before and after my cancer diagnosis. Our trip to Paris gave my some time and some literal distance to continue this process. I also talked extensively with Judy and with other family members and friends, both stateside and in France.

Glad

When I came out of Dr. Evers' office this afternoon, it was pouring rain. And I'd left the top down on my car.

I mean really raining.

It didn't bother me a bit, though. I'd just gotten word that my CT scan yesterday morning showed no new cancer. So a wet car seat was a-ok with me.

It has been a while since I've written here, and a few important things have happened that I want to write about - a significant breakthrough in my psychological counselling, my trip to Paris with Judy, Ed & Kathy, the amazing support and forebearance of my law partners, and my continuing struggle for something approaching digestive normalcy.

For now, though, I just want to repeat: no new cancer! No new cancer!

Amen.

New Eyes

This morning, Judy and I met with Dr. Louis Gelrud. Dr. Gelrud was the gastroenterologist on call one weekend when I was in the hospital. He took me off the hated reglan and seemed extremely intuitive and broadly experienced.

I can't help feeling a little disloyal to Dr. Kumar, who has been very good to me, but I think I need a new set of eyes on my case.

Dr. Gelrud wants to take me off the bentyl and put me back on zelnorm, but at very low doses. I bought a pill splitter this afternoon so I can take 1 mg twice a day. We may have to try different dosages before we hit on the right approach. I'm a little apprehensive about going off the bentyl, as it has given me significant relief.

Dr. Gelrud also wants me to lower my fat intake. I haven't been eating much fat as it is, so we'll have to see how that works out.

Not again.

Today is the Feast of the Assumption.

Friday afternoon I had an endoscopy. Dr Kumar dilated one of my valves and took a biopsy. He, also, found no new cancer.

I was dosed with a cocktail of versad and demarol for the procedure. Afterwards, I was pretty spaced out and went to bed early.

On Saturday morning I started experiencing some sharp abdominal pain. The gastroenterologist on call, Dr. Farrell, directed me to go to the emergency room. His concern was the possiblity that the dilation had torn the valve, and he wanted me to get an x-ray to check for "free air" - bubbles loose in my abdominal cavity but outside of the digestive track.

I spent most of the day in the emergency room. The pain ebbed and flowed throughout the day. The ER doctor, Dr. Powell, examined me and said that I'd be a lot sicker if I'd had a tear, but he ordered an x-ray anyway. The x-ray showed nothing wrong. In fact, by the time I left, the pain had ebbed completely and has only been back once, for a very brief time.

My brother Dan met me at the emergency room and spent the day with me. Toward the end of my time there, Judy arrived, having found a friend to come to the house and stay with the kids.

There's a lot to be glad about - I didn't have a tear, no new cancer, a good day on Sunday. Still my apprehension is refreshed, even by the bullets I dodge. Not only am I impatient with the pace of my recovery, but I'm fearful of moving backwards.

Just when I thought I was out, they pull me back in.

I've had a busy medical week, and I'm not done yet.

On Monday I had a gastric emptying test. It was much easier than the last one because 1. I wasn't suffering from overwhelming nausea and 2. I didn't have to spend 90 minutes under the machine - just one minute every15 minutes for two hours. The nuclear medicine technician couldn't tell me much about the results.

On Tuesday, I had my 6 week check-up with Dr. Evers. We discussed my digestive issues and my concentration issues. He was interested, and noted that, while bothersome, none of them indicated recurrence of cancer. We scheduled my next CT scan for after Judy and I return from our anniversary trip. He thought getting away would really be the best thing for me. I also told him that, after haranguing him for clearance to exercise, I'd only lifted weights for the first time this past Sunday. At least I recognize and understand the resuming-exercise-after-a-long-hiatus pain.

This morning I met with Dr. Kumar again. He said the gastric emptying test still shows slow emptying. He said that the way my stomach is configured, food tends to settle in the bottom, but the "drain" is at the top. He wants me to meet with my surgeon, Dr. Parker, to get his take on it and what can be done. Dr. Kumar didn't come out and say I'd need more surgery, but he wouldn't rule it out either. He also wants me to check my blood sugar levels during my vaso-vagal events to see if they are hypo-glycemic (low blood sugar). We also scheduled another endoscopy for Friday afternoon.

No meeting with Dr. Lynch this week. I'll see him and Dr. Parker (not at the same time) next Thursday.

I'm torn between being encouraged that the doctors can make some progress toward making me feel better and being terrified that I'll have to go under the knife again.

Time for another look.

I met with Dr. Kumar, my gastroenterologist, this morning. My biggest concern is the vasovagal events which are occurring just about once every two weeks. He thinks I might have swung from slow emptying to rapid emptying. If so, my diet is exactly the opposite of what it should be.

We scheduled another gastric emptying test for next Monday. Then I'll see Dr. Kumar again on Wednesday so we can talk through the results. The last time I had this test I was suffering from severe nausea and doubted I could keep down the radioactive egg sandwich required for the test. This time won't be nearly so bad.

By coincidence, my next appoinment with Dr. Evers is on Tuesday.

While I'm learning to resume much of my pre-cancer life despite the discomfort and inconvenience of my persistent digestive issues, it would be even better to get them resolved.

Here's hoping!

Cleaning up debris

At 6:30 this morning, I checked into St. Mary's for my port-a-cath removal. I was directed to the ambulatory surgery department on the 7th floor. I guess that means you walk in and walk out.

The procedure went fine, and I was walking out by 8:30. The wound is a little tender, but really not too bad. Dr. Parker and the surgical nurses were a jolly crew. The operating room was very cold. The most disturbing part was the odor while Dr. Parker cauterized the wound.

The insertion of the port-a-cath last November marked the beginning of my treatment, so its removal is a significant milestone in the ending of the treatment.

It's been a too long time.

I'm striving to put my experience behind me, but it just won't let me go.

Yesterday, after a late lunch and while good friends were visiting I had another vaso-vagal reaction. It begins with a very uncomfortable feeling of pressure in my abdomen, followed by dumping and then hot and cold sweats. Finally, I have to sleep for a few hours to recover. I haven't got a handle on what causes the reaction and feel like I'm constantly susceptible.

Tomorrow morning, Dr. Parker will perform surgery to remove my port-a-cath. It is minor, out-patient surgery without general anaesthesia, but I'm still a bit edgy about going under the knife again. I have to be at St. Mary's at 6:30. Showtime is 7:30.

I'm trying to focus on reclaiming my former optimism. I think if I can get that back, everything else should follow. It's hard to do, though, when I'm still struggling to be finished.

Celebrating Victory

My cell phone rang at 7:30 Saturday morning, waking me. My first reaction was to brace for some bad tidings. Instead, it was the people with the moonbounce.

By 8:00 they had it set up in the back of the yard and were on their way. By 8:15, still in their pajamas, our three kids were bouncing away.

My caterer friend, Keith, arrived shortly thereafter and began the food prep. Martin brought the kegs from the pub in a beer wagon and set up the taps. The thirty by thirty tent had been set up on Wednesday, and my brother Dan had set up the sound system on Friday night.

By eleven o'clock we had about a hundred people at the house including family, neighbors, law partners and colleagues, clients, parishoners, musicians, pub regulars, Hibernians and other great friends. Notice of the party was short and scattershot, so we were stunned and humbled by the turnout.

Around 11:30, I rang my father's antique, bronze ship bell and we began Mass. Music was performed beautifully by Cindy Jennings with Barry, Lynn and Eleanor Trott, and our son Seamus. Ed Tatum and my mother read from Ecclesiates and Paul. Deacon Patricio Torres proclaimed the Gospel. Our pastor, Fr. George Zahn presided over a moving and beautiful service. Judy and Mairead read the prayers of the faithful, written by Judy's mom, Jeanne. I want to share them here:

FOR ALL GOD’S HOLY PEOPLE,
ESPECIALLY FOR THE CHURCH AT ST. PAUL’S,
WHOSE PRAYERS AND AFFECTION HAVE WRAPPED US IN GRACE,
LET US PRAY TO THE LORD…

FOR ALL WHO ARE CALLED TO SEE THAT JUSTICE IS DONE,
ESPECIALLY FOR THE PEOPLE OF LECLAIR RYAN,
WHO SHOW US THAT TRUE JUSTICE IS CLOTHED IN MERCY,
LET US PRAY TO THE LORD…


FOR ALL WHO HAVE DEDICATED THEIR LIVES TO HEALING,
ESPECIALLY FOR THE MANY WHO HAVE WORKED WITH JIM,
AND FOR ALL THOSE SICK AND WOUNDED PEOPLE WHO WILL NEVER KNOW SUCH LOVING CARE,
LET US PRAY TO THE LORD…


FOR POETS AND ARTISTS AND MUSICIANS,
ESPECIALLY FOR THE BAND AND THE PEOPLE AT THE PUB,
MAY THEY CONTINUE TO ENLIVEN OUR HEARTS AND OUR FEET WITH
THEIR SONG,
LET US PRAY TO THE LORD…


FOR ALL OUR RELATIVES AND FRIENDS WHO HAVE MADE THE JOURNEY WITH US, ESPECIALLY FOR JIM’S PARENTS WHO PUT THEIR LIVES ON HOLD TO HOLD OUR LIVES TOGETHER;
FOR THE PEOPLE WHO BROUGHT US DINNERS AND CLEANED UP THE YARD; FOR THE ONES WHO TOOK US TO SCHOOL AND TO APPOINTMENTS; FOR THE ONES WHO CALLED AND SENT CARDS; FOR THE ONES WHO LISTENED AND DID LAUNDRY; FOR ALL WHO FILLED OUR BOX OF GRACE AND FILLED OUR HEARTS:
MAY THEY KNOW GOD’S REWARD FOR THEIR GOODNESS AND MAY THEIR EXAMPLE SHOW US HOW TO HELP ONE ANOTHER,
LET US PRAY TO THE LORD…


FOR ALL OUR RELATIVES AND FRIENDS WHO HAVE GONE BEFORE US TO SHOW US THE WAY,
ESPECIALLY FOR UNCLE LAWRENCE,
MAY THEY TAKE THEIR PLACE IN GLORY WITH ALL THE SAINTS WHOSE PRAYERS HAVE SUSTAINED US AND WHOSE EXAMPLE WE MEAN TO FOLLOW,
LET US PRAY TO THE LORD…


FOR ALL WHO ARE SICK, FOR ALL WHO HAVE BEEN BROKEN BY WAR, FOR ALL WHO HOLD POWER AMONG THE NATIONS, FOR ALL WHOSE LIVES HAVE BEEN SHOCKED BY TERROR,
ESPECIALLY FOR THE PEOPLE IN LONDON,
FOR OUR PRECIOUS AND WOUNDED WORLD,
LET US PRAY TO THE LORD…

We are grateful for those who came to celebrate with us, for the many others who told us they would be with us in spirit, and for the many, many others we did not get timely notice to, but whose love and support made our victory happen.

Thanks to you all.

All Clear.

Judy and I just left Dr. Evers' office. My CT scan showed no change, that is, no new cancer. We are enormously relieved.

My next appointment is not for six weeks - by far the longest I'll have gone without seeing Dr. Evers since I met him. My next scan will be some time in September.

Time to finalize plans for the victory party.

Eggs Benedict Arnold

This past weekend, I went out of town on my first overnight. Judy and the kids and I went up to Bryce Resort for a family reunion. My father's brother and one of his sisters, some cousins and their families, my siblings and parts of their families were there. We had a great time touring Shenandoah Caverns, watching a ballgame between the New Market Rebels and the Winchester Royals, and generally just catching up.

I tried some hollandaise sauce on my eggs at brunch on Sunday. That or something else messed me up for a good part of the day. I think I had another vasovagal event. But for that, I had a great time at the reunion.

This morning I had a CT scan. I learned that lukewarm barium doesn't really taste much worse than chilled barium. Judy and I will meet with Evers tomorrow to get the results. Obviously, we're hoping the result will be no new cancer. If we can confirm that, my next CT scan will be in September.

Shelter

Today is the Feast of St. Thomas More, patron of lawyers.

My son, Seamus, and I went to Mass at St. Paul's this morning to celebrate the feast with the Richmond St. Thomas More Society. Our old friend, Bishop Sullivan presided.

I've been coming into the office every day, and even doing some work. Yesterday I attended a firm meeting, a bar association meeting, and a meeting with a client and and some state regulatory staff. These moments that remind me of my prior life are especially rejuvenating, and are slowly increasing in frequency. I'm grateful for the confidence of my partners, colleagues and clients.

I have two major challenges that I'm still struggling with. First is physical healing. I'm still trying to lick the gastro-intestinal discomfort, and to rebuild my strength and stamina. The medicine Dr. Kumar gave me a couple weeks ago is helping with the former. I need to talk with him about increasing the dosage. The latter is just going to take more time.

The second major challenge is reclaiming my life. I think the major obstacle is my own fear. Last week Dr. Lynch challenged me to think about whether I really lost aspects of my self, or if I hid them away to protect them.

I think he may be on to something. Judy and I have been examining a metaphor of a storm shelter. She feels that the storm is over, she's climbed out of the shelter and is looking at the fallen trees and other damage. There's a lot to clean up, but the house is still standing.

I'm afraid the storm might not be over, and that we'd better not stray to far from the shelter, just in case.

I have a CT scan on Monday, and we meet with Dr. Evers on Tuesday. I'm hopeful that there'll be no new cancer, and that with some positive reassurance, I'll be able to leave the storm shelter behind.

In spite of my persistent fears, we're planning our victory celebration for July. Our pastor, Fr. George, will celebrate a Mass of thanksgiving at the house. Afterward we'll have a big party, with live music, a moon bounce and a giant cake.

Tonight, my tv interview airs on Richmond's channel 12. It should be on the news at 5 or 5:30.

Media Blitz

Today was my first day this week without a medical appointment, and I've spent most of the day doing actual lawyer work!

I met with my gastroenterologist, Dr. Kumar, on Wednesday, and he gave me some new medicine to try and relieve my intestinal discomfort. I should be able to tell in about a week whether it is working. While I'm guarded in my optimism as to whether it will, I'm delighted that he's still working on it and has ideas left. I had pretty much concluded that I would just have to live with it.

I also met this week with Stacy Adams, a columnist for the Richmond Times-Dispatch. She's writing a piece about my blog for the faith and values section of the paper. It should appear in Saturday's "Metro" section. My TV interview is scheduled to air on June 22 at 5 or 5:30. I wish I could get as much press attention for my lawyering and the band!

Stacy and several other folks have asked me how long I'm going to keep the blog going. I'm not sure. I'm looking for a point where I can sign off, saying "and he lived happily ever after." It's hard to say when that will be, but I hope I'll know it when I see it.

A doctor a day keeps the apples away.

This morning Judy and I met with my oncologist, Dr. Evers. I had been saving up all the twinges and pings I've noticed over the past 4 weeks since our last appoinment. At the top of the list was the wheezing I often experience first thing in the morning and that I was terrified could be cancer in my lungs. Dr. Evers did not seem to think that was a likelihood, noting instead that "You're stomach's in your chest - what do you expect?" This was essentially the same thing Judy had said earlier this morning.

Dr. Evers said I could resume exercising with free weights, but he is reluctant for me to undertake any aerobic exercise because of the likelihood that it will accelerate my weight loss - currently about 1 lb/week.

We scheduled a CT scan for June 27 and another appointment with Evers on the 28th. This will be my first periodic/quarterly CT scan to monitor for new cancer growth. These will go on for two years, at least. There are only two difficulties with the CT scans. First is the anxiety about them finding something. The second is swallowing a quart of Barium. This is especially challenging since I can't seem to drink cold beverages. The stuff tastes bad enough cold - I can hardly wait to taste it lukewarm.

Tomorrow I have an appointment with my surgeon, Dr. Parker. I expect we'll discuss removing my non-functional port-a-cath, perhaps in early July.

On Wednesday I meet with Dr. Kumar, my gastroenterologist. Dr. Evers wants me to discuss resuming my Nexium with Dr. Kumar, and also my post-prandial (after eating) cough.

On Thursday I meet with my psychologist. No medical appoinments on Friday!!

Milestones

As my pace of recovery continues at a crawl, I'm trying to push myself a bit. I realize I can't wait until I feel completely well to begin to recover my life. For one thing, some of my persisting issues may persist forever. For the others, resolution, if it comes at all, will take a long, long time.

Last Thursday I played a full set with the band. I had a stool on stage that I rested on while others were singing, but I think I did ok. I was certainly glad to be there. Channel 12 sent a cameraman to get footage for the interview. I understand it will air on June 22.

Yesterday, Memorial Day, we travelled to Falls Church to be with Judy's family and my brother's family for the annual parade. This was the first time I left town since my surgery, so it represented a significant milestone. I was anxious, but the day went fine and it was great to see everybody.

Tomorrow is my official back to work day, but I'm in the office today, as I was three days last week. I expect it will take me a while to ramp back up to a full workload, but I'm eager to reclaim this part of my prior life.

My great uncle, Lawrence Finer, passed away last night. He was a great man and the closest thing I had to a grandfather in my life. He wrote to me during my treatment to tell me that he'd had most of his stomach surgically removed when he was forty years old. He lived a full, strong life, well into his nineties. I miss him immensely already.

I don't know whether I'll be up to the trip to New Jersey for his funeral.

One step. One step. One step. One step.

The past few days have been fairly eventful.

Over the weekend, each of the three kids had a music recital or concert. I played with Seamus at his recital, and enjoyed hearing Callaghan and Mairead perform. We also went to a potluck, end of season party for Seamus' soccer team. Judy brought a dish we knew I could eat, and we had a nice time with the other team parents.

On Monday, I had my blood levels checked. They were good and I did not need a procrit shot. Then, Judy and I went to a men's store and I bought 2 suits, a shirt, a belt, a tie and some socks. I don't really need new socks, but they're a good match for one of the suits. Buying some work clothes is an important step towards going back to work, as none of my old clothes fit at all.

Yesterday, I was interviewed by the local NBC affiliate about my battle with cancer. My oncologist, radiation oncologist, surgeon and gastroenterologist were all there as well. Also the director of the cancer ward at St. Mary's Hospital participated. The news crew talked about coming out to the pub for some action shots as well. It is supposed to air June 22.

Last night I tried my first Guinness since before my February 21 surgery. It didn't taste right and it did not process right either. I'm pretty disappointed. I'd been looking forward to it.

Today, I met with my psychologist in the morning. Later, I went to my office to try to organize my return. I started in on the 5000!!! e-mails I have backed up.

I continue to entertain a seemingly endless variety of twinges, jabs and tingles. It's hard to distinguish what is cause for concern and what should just be ignored. I'm trying to ignore as much as I can.

A week without chemo is like a day without taking a beating.

My progress has become a bit more perceptible this week. While eating and digestion is still a challenge, and while discomfort is persistent, I can tell I'm doing better.

On Tuesday, I met some people for lunch at a restaurant for the first time since my surgery. I had spaghetti with meat sauce without creating any spectacle.

Yesterday evening, I joined the band for the second half of the first set again. I had a great time and felt very well while I was on-stage. Next week I hope to play the whole first set. Also, my friend with the brain hemorrhage was released from the hospital yesterday and is doing great.

Today, Judy and I went to World Market and Target to get "gear" for integrating my weird diet into work. We got a toaster, electric kettle and thermal carafe, as well as a cabinet to keep them and a food supply in my office. I want to make the frequent eating as non-disruptive as I can.

Tea has become incredibly important to me. Without any scientific or medical basis, I've come to believe that the hot decaffeinated tea I drink after each "meal" is what's keeping my digestive system going. It's also my main source of fluids, for now at least.

I'm looking forward to adding Guinness back to my regimen. Maybe I'll try one next week or the week after.

I'm so grateful not to have had chemo this week.

No chemo today!!!!

Today is the day I'm not starting chemo again. If I were doing another round, it would have been this week. Happily, I'm not.

The past few days have been eventful.

Friday evening I had what the gastro-enterologist on call labelled a "vasovagal" event. At about 6:00 pm, I was home alone with our youngest child, and I suddenly broke out in a cold sweat all over my body. I also felt very unsteady. This lasted for about 15 minutes, during which I wondered 1. what the hell was happening to me, and 2. if I was dying.

When the gastro-enterologist called back, he did not seem especially concerned, and advised me that if it happened again I should lie down until it passed. He said it was essentially the same as fainting, and described some possible causes, none of which seemed to apply. When I asked if I should call my oncologist, he said no, that it originated in my digestive system. It seems like I should be finished with new ailments by now.

I haven't had another episode.

On Saturday we were Judy and I were overwhelmed by the kindness of 17 friends who came to our house in work clothes and did more yardwork, chores and housecleaning that we ever would have done on our own if I were fully fit. The house and yard have never looked so good, and the generosity of these fine people had a palpable healing effect on me. Thanks.

Yesterday, after Mass and lunch, I received a phone call from a close friend. He said that he'd had a seizure and was in the hospital emergency room and "just thought someone should know where he" was. I have some recent expertise at sitting around in hospitals, so Judy and I quickly decided that I should go to him.

It turned out that he'd experienced a brain hemorrhage and had a benign cyst in his head. Last night a neurosurgeon performed emergency surgery and drained the blood and the cyst. The surgery went well.

My friend is in his forties and had absolutely no reason to suspect anything was wrong with him.

I get the point that life is fragile and uncertain. I don't need any more lessons.

But, I was glad I'm strong enough that I was able to be with my friend during his trials. I'd rather not have the opportunity to give back some of the kindness shown me these last seven months. Given the opportunity, I'm glad I was able.

Two Steps Forward, One Step Back

It's hard to see progress from day to day. Sometimes it even seems like the opposite of progress.

But week to week, a thin pattern of progress is barely discernible.

For example, two weeks ago I was in the hospital. Last Thursday evening, I was at the pub watching the band play. Last night, I was able to join the band for part of the first set, and even sang two songs. It was great. While I was playing with the band, I didn't feel the everpresent discomfort in my gut. It seemed like a promise that someday I might recover some of my old life.

Yesterday was a pretty good day overall. I met with my psychologist. I went to Target and bought some clothes that fit.

Buying clothes was surprisingly stressful. I've lost about 60 pounds, and while I had the weight to spare, it does feel like a loss to me. While I keep being told I look great without the weight, the weight loss to me seems akin to my hair loss and surgery scars - just another physical sign of the trauma I've been through.

Still, in all, yesterday was a pretty good day.

This morning is more of a step back. On doctors orders I had foregone my medicine since Tuesday, when I had some digestive problems. On the same orders, I was to resume the medicine today at just 2 doses a day. I took my first dose at 7:30 this morning. The digestive problems resumed at 9:30 and 10:30.

I'm waiting for the doctor to call me back.

I'm trying to keep my eye on the positive progress, but I can't help feeling a bit discouraged.

Ugh.

Yesterday was a tough day. Lots of intestinal discomfort and disfunction.

I talked with Dr. Kumar. He said to stop taking the medication for a few days and then resume at a lower dose.

I find myself thinking constantly about myself, my condition. My gut is almost always uncomfortable, but sometimes I can be distracted, like when Judy and I played Monopoly with the kids on Sunday evening. Then I at least don't notice it as much.

Tomorrow I meet with my counselor, John Lynch. I expect to spend a good part of the time talking about fear.

Glacial Progress

My fearfulness is subsiding somewhat as I'm coming to terms with my circumstances.

I had a mostly good meeting with Dr. Evers this morning. He reassured me about some of my fears about making a mistake with the gastroparesis. If I overeat, I might throw-up, but I won't be rehospitalized. What put me in the hospital the last time was the chemo. Since that's done, I should continue to make progress.

On the less encouraging side, that progress is likely to be very slow. I asked Dr. Evers when I'd feel better, and when I'd feel myself again.

He said full recovery takes about as long as the full treatment did. That's SIX MONTHS!!! He did say that I'd feel substantially better in two or three months, but even that seems impossibly long.

I can't wait that long to go back to work. I just can't. On the other hand, there's no use going back the way I feel right now. This will be a tough one to call.

In other good news, my bone marrow seems to be doing a reasonably good job producing red blood cells, so I didn't need a procrit shot today.

I've been reading through some of the blog posts Judy made after my surgery. It is amazing to me how much I can't remember about that time. It's also amazing to me how strong Judy has been and is.

If I only had the nerve.

This is harder than I anticipated.

I am filled with apprehension and don't know quite what to do with myself. I guess I must really have thought that when I reached the end of treatment I could declare victory and go back to being my old self, more or less right away. Instead, I'm trying to come to terms with gastroparesis, something I never anticipated, and trying to find a path back into my old life.

I'm especially surprised by how fearful I am. Fearful of eating too much. Fearful of not eating enough. Fearful of eating the wrong thing. Fearful of pushing too hard or not hard enough. Fearful of going back to the hospital. Fearful that the cancer will come back. General, unassigned fear.

I seem to have exhausted my courage reserves.

New start

It is great to be home with my family.

I was discharged from the hospital yesterday around 11:30. We stopped at the Westbury Pharmacy on the way home to pick up my new medication.

Later in the day, I rode with Judy to pick up the kids from school.

This morning Judy and I cut all my hair off, again. It was falling out so rapidly that it was leaving a mess wherever I was.

I have a few challenges still to overcome:

1. Gastroparesis. This describes the condition of my stomach. It has essentially quit doing the peristalsis (sp?) thing. There is no way to tell whether this is a temporary or permanent condition, so we're treating it as a permanent thing. I have to learn a whole new way of eating. Lots of foods are out of bounds, especially high fiber and high fat foods. In addition, I haven't been digesting dairy very well lately, so that is also out of the picture.
2. Regaining strength. I am as weak as a kitten. To get stronger I need to eat, but there are significant limits on how and how much I can eat because of the gastroparesis. I also need to exercise, but to start out, I'm pretty much limited to walking.
3. Reclaiming my self. Not quite sure how to go about this one. After 6 months as a cancer patient, a lot of my basic assumptions about what I can do and who I am have been drastically undermined. Somehow, I have to dig out of the hole.

Homing

I'm feeling and eating much better, and the doctors are weaning me off the TPN, (the IV nutrition).

My new drug, Zelnorm is working great, and I seem to have recovered much of my previous demeanor.

Two big news items:

1. I'm going home tomorrow!
2. I'm not going to do any more chemo.

Time to start planning the victory party.

It's May!

There's not usually a lot of weekend progress in hospitals. Usually another doctor you may not even know is covering for your doctor, and he or she is generally just there for emergencies.

Yesterday, I had different kind of experience. The on-call doctor for my gastroenterologist changed my medicine. He took me off Reglan and gave me a newer drug called "zelnorm" or something like that.

The new medicine seems to be 1- working better than the Reglan and 2- not making me so weepy and depressed. I'm eating a little more, and I'm hopeful this switch may help move me along.

Tomorrow I have an EGD (endoscopy) scheduled for around noon. We'll see what Dr. Kumar finds with that.

Glacier Speed.

Last night, I had echoes of the bone pain, though not as severe (say a "5' instead of a '9"and pretty much localized in my knees). Some tylenol seemed to to the trick this time.

Dr. Evers suggested that I might get out of the hospital this weekend, but I still have a lot to accomplish first:

1. The nausea seems mostly under control - check.
2. I have to be able to eat and hold food down. This is trickier.
3. I need to have a least one normal bowel movement.
4. I have to get off the TPN (intravenous nutrition) 1-3 are preconditions for 4

I determined to stick it out here until I'm sure I won't have to come back

Bone Pain returns with a Vengeance

Yesterday was the six month anniversary of my diagnosis. I never considerered this would go on so long.

Around 4:30 this morning I woke up with intense bone pain at base of my back. Within 20 minutes it had spread throughout my entire body, wracking me with the most intense pain I have ever experienced. I actually lay in my bed moaning at the top of my lungs, mortified at the noise and unable to stop.

The pain was caused by the neupagen blood boosters I'd been taking to get my blood back to full strength. Because of my gastroparesis and related issues, I could not take any narcotics for the pain. Tylenol was useless.

Finally, the nurses tracked down Dr. Evers' on-call partner who prescribed a non - narcotic IV muscle relaxer that provided some quick relief. Around here, pain is graded 1-10. I was at 9+ throughout my body. I'm now at about 3, mostly in my knees and lower back.

The best news is - no more Nupagen. Dr. Ever's says it is administered for 10 days or until the bone pain kicks in. So I guess I got lucky, hunh?

Big Choice

In my last post, I raised the possibility of foregoing a last planned treatment of chemotherapy. Here are some some of the considerations floating around in my decision process.

1. I don't have to make this decision this week, but the ability to entertain the possibility is very encouraging to me.
2. I won't make any choice without full buy-in from Judy.
3. I won't make any choice without full consultation with my oncologist.
4. In the art of "beating me within an inch of my life" the key is knowing when to stop.
5. My cancer is gone already. The pre-surgical chemo and radiation killed it, and the surgery took it out. My post surgical chemo is insurance, and I've done one round.
6. I don't think the doctors can quantify any measurable positive effect of additional chemo.
7. I do think there is some measureable risk to my of additional chemo.
8. In the phrase "That which does not kill me makes me stronger," the most important word is "not."
9. None of my family seems strongly opposed to the possibility of foregoing the last round of chemo.
10. My oncologist does not seem opposed to, and indeed has identified some basis for foregoing the last round of chemo.
11. If, God forbid, I have more cancer in the future and HAVE to do more chemo, I can't imagine facing that prospect if my last experience has been WORSE than this one.
12. I just want to be finished.

Back to St. Mary's

I'm back in the hospital.

The nausea and other chemo side effects were just not resolving at home. I haven't had any appreciable nutrition since Wednesday, and every problem we solve seems to create another one.

I am hopeful that a few days in hospital will put me back on track.

More important, in the long-run, is my conviction that I cannot endure another bout with chemo like this one. I've opened a conversation with Dr. Evers and Judy about the implications of foregoing the last planned round of chemo.

I just can't do this again.

Chemo 4.Infinity

Where did we leave our hero? Day 3, not so bad. Days 4 and 5 miserable. Day 6 -- day 6? I thought chemo only went for 5 days. It does, if the 5FU is hooked up at 7 a.m., instead of 7 p.m. Because of glitches like needing extra fluids, the 5FU will go to mid-morning Sunday. The delayed nausea from the cisplatin will hopefully have played itself out by tomorrow. Fifteen minutes at a time.
Judy

Chemo 4.3

It's starting to wear me down, but I'm counting days to the end. Tomorrow is April 21. I should finish my last chemo on May 21, so there is a light, however small, at the end of the tunnel.

-- "I have climbed highest mountains. I have run through the fields, only to be with you. Only to be with you."

Chemo 4.2 - Habemus Papem.

I really thought the conclave would last as long as my chemo this week.

Chemo's going fine. It makes me tired, but the other side effects are so far scarce.


-- "I get knocked down, but I get up again, and they're never gonna keep me down."

Chemo 4.1

FINALLY!!!

After 2 weeks and a few hours delay, we finally started my penultimate round of chemo yesterday. Because of a low grade fever I had last week, my infusions were delayed a bit until Dr. Evers had a chance to check off on my labs. In the end everything was ok, and I got started about noon.

I now have only one dose of taxoll left at the beginning of my last round in May, nine doses of Cisplatin, and nearly 200 hours of 5fu. Current estimated completion date is May 21. Victory party should be a couple of weeks after that.

So far, I'm feeling pretty good. Had my best nights sleep in weeks last night. I'm actually really encouraged to be back on chemo and back on the plan.

I'm doing better. When I met with Dr. Evers on Thursday, he cut my Reglan back to 5 mg 2x day - from an original dose of 20 mg 4x day. He also gave me a small dose of ativan to counter the anxiety. I think I've finally struck a workable balance.

Yesterday I had a picc line inserted in my right arm. The good news is, this means I'm starting my penultimate course of chemo on Monday. The bad news is, the picc line goes into my right arm right where it meets my guitar, so my musical recovery is set back a bit more. I'll have to focus more on whistle and braying (trying to sing).

I finally met with Dr. John Lynch, the psychologist yesterday. Most of our time was spent with my explaining how I'd had a perfect life interrupted my meaningless disease. He believes my depression is a reaction to my circumstances, and not a more fundamental sadness. I think that's true, too. He also thinks I may be having a spiritual and identity struggle that may take a little more work. I agree with that, too.

I can't tell you what a relief it is to be free of the bugginess. Most important, I'm ready to take on chemo next week.

Then three weeks off.

Then one more week of chemo.

Then I start to crawl out of the hole, and try to take back my life. Here's to Memorial Day 2005.

Millimeter by Millimeter

I'm still buggy. I don't know what to do with myself.

I see Dr. Evers this afternoon and Dr. Lynch tomorrow, but the next 15 minutes is daunting.

This is not me.

Inch by Inch

One of my friends suggested to me yesterday that I might not be complaining enough to my doctors.

Judy was horrified by that sentence before she heard the last three words.

Anyway, I called Dr. Parker this morning and told him about my persistent bugginess. He consented to cut the dosage of Reglan in half, and thinks that should do the trick.

I also asked him how I would know when the gastroparesis is better. He did not have as easy an answer, and said it would just take time experimenting with the medicine.

Finally, he agreed that a glass of wine in the evening would be ok. He said it is a good appetite stimulant and an excellent source of calories.

Next time I'll ask about Guinness.

Working the plan

We are currently in phase 2 of the gastroparesis diet plan. Phase one was boullion, gatorade and saltines. In phase 2, yesterday, I had a soft-boiled egg, apple sauce, lowfat mozzerella cheese, acorn squash, tomato soup, spaghetti with tomato sauce, and a couple of caramels - all in very small portions in 5 or six "meals" throughout the day. Also, lots of gatorade and some saltines.

The diet is working well. I'm getting some nutrition and the nausea has not returned. Eating is becoming a full-time job, though. Plus, after every meal, I feel I need to get up and walk around to help gravity compensate for the gastroparesis.

Judy and I are going to go out to Target for a short outing today. It's odd to be apprehensive, but I think it should go fine and that I'll gain confidence from the trip.

I rode my stationary bike for 5 minutes today at an easy pace. Tomorrow I'll try 7 minutes.

Unh!

I'm feeling too well to sleep all day, but not well enough to do much of anything else either. I can't concentrate enough to read or even watch television, and I'm too feeble to do much in the way of puttering and chores.

The main actions of my day are eating and taking medicine, and bracing for a bad reaction to either.

Judy reminds me how much better I'm doing: No cancer, no pain, no nausea. But I'm completely at loose ends.

I made an appointment today, finally, to speak with a psychologist/counsellor. The best part of that so far was the call with him to arrange the appointment, and the phone call with the insurance company to organize the financial details.

I also completed and filed my long-term disability insurance claim today. It breaks my heart to think this will extend past 6 months, but with the most recent setbacks and consequent delays in my chemo, it is now a foregone conclusion, and the insurance should kick-in.

Judy is right, as usual, that things are better and improving, but I remain impatient and frustrated.

I'm devastated that I can't sing, though people who know assure me it will return.

My blog entries seem to be losing some of their earlier structural coherence. Wonder why.

Just one damn thing after another

I continue to be pain and nausea free.

Unfortunately, last evening and this morning, I experienced severe nervous restlessness. I don't really have the energy to keep moving, because I'm not getting much nutrition, but I can't keep still either.

I talked to Dr. Parker who, fortunately, is on call this weekend. The restlessness is a side effect of the Reglan I'm taking to stimulate my stomach to resume working. I guess it makes sense that if it is designed to make some muscles twitchy, the others can get caught up in the same net.

He told me to take a teaspoonful of liquid Benedryl two or three times a day and that it should clear up.

I have to remind myself that twitchy is bad, but not as bad as nausea or pain.

I guess the greatest disappointment is that we were not able to attend our new nephew's christening in Falls Church today.

Son of a glitch, indeed

I think nausea might be worse than pain.

And the fear of either returning is pretty dire, too.

It was great to sleep, nausea-free, in my own bed last night. I had six room-mates during my week in the hospital. If I could have found someone to bribe to get me a private room, I'd have happily shelled out big bucks, but evidently full means full. It's bad enough to feel sick without having to share space with strangers. I think I've found a limit to my extroversion.

I'm glad to be home, and feel good in many respects. I have no more post-surgical pain. I'm not nauseated, though I can't seem to unclench the nervous anticipation of its possible return. And I'm really, really weak.

This morning, Mom, Dad and I took a very short walk down the block and around the garden. Something my pre-cancer self could have done without noticing. It wore me out completely, but I'm determined to keep pushing. Dr. Parker said I could start working out as soon as I feel like it. I'd like to start rebuilding strength before I resume chemo if I can, but on my current diet of gatorade and saltines, I don't have a lot of calories to burn.

My weight is down about 50 pounds, which would be great if it had all been the right 50 pounds. I'm quite certain I've lost at least as much muscle as fat. None of my clothes fit, and I'm reluctant to buy clothes for my current shape.

I'm going to try to do as many little things as I can over the next week. For example, this morning I replaced the smart card in my satellite tv receiver. Not a big deal, but an accomplishment from my perspective.

Once again, I've been overwhelmed by the kindness and generosity of our friends and family, and especially all the folks reaching out to Judy. This ordeal has been barely tolerable with the massive support we've received. I can't imagine how one could endure something like this alone.

God bless all our friends and families, and keep sending out healing prayers.

Week's end

Just a quick post from me to say that Jim is home, and feeling well. I'll let him tell the rest.

Green Eggs and Ham

Well, no ham, but Jim's breakfast today was a radioactive egg. After eating it, he lay on a table in the nuclear medicine room for 90 minutes with a scanner above him to track the progress of the egg through his system. Sadly, there was no progess, thus giving us a name for Jim's troubles: gastroperesis or slow stomach emptying. Diet and medicine will help combat this, but I think it is our old friend, "tincture of time," that will have the most effect. Patience, Grasshopper, patience.

I don't know how this will affect the chemotherapy schedule, except that it won't be happening Monday.

Judy

Son of a Glitch

Jim had an ok night, though it's pretty hard to sleep in the hospital. The nausea crept back in around the edges over the evening hours, though it was by no means as severe as before. There are periods where he is not nauseated at all. Jim relates that he can't really interpret how he's feeling since it's been ages since he felt like himself. He did eat and drink today, after Dr. Evers re-organized his medicine to make eating more feasible. Jim might have something called a gastric-emptying test (I think) tomorrow. This examines stomach emptying as a function of muscle activity as opposed to the other tests which looked for obstruction.

On the plus side, what a beautiful day.

Judy

Whew

Today is the first time in six weeks that I have seen Jim without either surgical pain or nausea. I remember that guy!

The procedure that was done today, a dilation of the pyloric join and of the reshaped area of the stomach, seems to have offered immediate relief to Jim. When I left him around 1:30, he was feeling good, and had consumed some jell-o and Italian ice. He'll remain at St. Mary's one more night to make sure he's tolerating food o.k. He had big plans for walks around the floor and a shower.

We saw the oncologist today and chemo is on for Monday.

Another Day in the Hospital

I find that I am inclined toward profanity today, but I'll try to behave myself. I'm worried that the made for TV movie of Jim's courageous battle with cancer will have to be on HBO for language.

Jim spent a pretty awful day. The barium swallow turned up no surprises, including the un-surprise that the barium made Jim feel worse. We finally saw our own doctors today, Kumar (GI) and Parker (surgeon). They both confirm that a lower dilitation is what is needed and it will happen tomorrow, hopefully before noon. An increased dose of valium left Jim sleeping this evening, and I hope he can get better rest tonight. Keep him in your thoughts and prayers so that discouragement keeps its distance and hope gets a fighting chance.

Judy

Glitch

Judy posting:
Yesterday, Jim's intractable nausea became problematic at about 4 a.m. At 7, we called the surgeon on call, at 8 Ed took Jim to the hospital, he was admitted around 10, and we saw the gastroenterologist on call at about 3. When Jim saw the surgeon on Thursday, Dr. Parker scheduled a procedure called an endoscopic dilitation, which stretches the joins between the stomach and the esophagus and the small intestine. Dr. Parker's assessment of Jim was that there was scar tissue causing a blockage at one of these points. Dr. Keate, the GI man, did this procedure yesterday afternoon. He did not find an obstruction, but did dilate the upper join. He also found an infection in the throat, which could be causing much of the nausea.

Jim woke this morning feeling well for the first time in days, and promptly felt ill again after consuming the clear liquid provided for his breakfast. Sundays in the hospital are pretty much time for hanging on until Monday, so that is what we will do.

Tomorrow, he is supposed to have a barium swallow and upper GI, and depending on the information from that, perhaps a lower dilitation.

Tonight's fond hope is that Jim can rest.

More as it becomes available.

Depression

Depression is as alien to my experience as anything I can think of.

Sure, everybody has experienced moodiness, sadness, anxiety, and I have too, but they've always been linked to some identifiable, limited cause.

What I'm experiencing now is qualitatively different. It feels like a fundamental shift in my world view from generally optimistic to pervasively pessimistic and fearful. I can't seem to muster that previously unshakeable tenet of my cosmology that everything is going to work out right.

I think I can peg the moment this began. When I fell in the hospital, and could not get up, I remember thinking that God, or as I was thinking of him at that moment, the "author", had finally gotten carried away with what he was dumping on me. In the language of the French comic books I read as a kid, I thought, "La, enfin, vous exagerrez."

The loss of confidence I experienced in that moment has since been aggravated by my persistent, post-surgical discomfort, by the infinitesimal pace of my recovery, by the effects of my pain medication, and even, I think, by the weather. Perhaps most poignantly, I can't sing. I don't have the breath or the voice. That is devastating for me, and I don't have confidence that it is temporary.

I feel like I've lost my self, and I have real doubts that I'll recover it. The grief I feel over that loss is devastating. Because I'm always uncomfortable and because eating is such a chore, I know I'm not regaining the strength I need to overcome this.

It seems likely to me that the fact that the immediate cancer peril has been defeated is actually contributing to my depression. The fight or flight impulse has relaxed, but I've still got a lot of fight to get through.

I had hoped to ride out the depression until I could get off the pain medication. But I've halved my dosage and the depression seems worse rather than better.

Today, I'm going to try to get some help. I've called my oncologist's office to ask for medication, referal to a counselor or psychologist or both. I'm going to call my surgeon to discuss the slow pace of my recovery. I may make some other calls as well.

As I told Judy, I'm sick of breaking records for the worst time in my life.

We have a new champion.

Puttering

When we met with Dr. Parker last week, he said that sometimes people just wake up one day and feel better. I'm hoping for that everyday, but have to satisfy myself with small, incremental improvement.

The worst part has to be the depression. Whether it is drug induced or situational, it is the hardest part of the recovery. I'm still reluctant to treat it with additional medication, because I'm convinced it will abate as I back off the morphine. I'm also concerned about the side effects of additional antidepression medication. For example, when I took the anti-anxiety medication, adivan (sp?) in the hospital, it mostly served to enhance some pretty frightening delusions about the "true" nature of the hospital.

Judy suggested that I try to "putter" a bit, just to get off the couch and to realign my perspective a bit. It's a good suggestion, but I feel generally feeble and useless - can't lift much, can't do many trips up and down stairs, can't think very straight - so even puttering is fairly daunting.

I am improving incrementally. I'm certainly better than I was a week ago. Every weird twinge or noise in my breathing sets me off, though, on a fairly destructive spree of fear and speculation. I've got to just get over myself.

Tomorrow, mid-morning, I have a CT scan at Dr. Evers' office. He wants a baseline, post-surgical picture of what I look like inside. No reason to fear any additional bad discoveries, but I don't seem to need a reason for fear these days.

I'm looking forward to Easter. My parents and much of Judy's family will come to the house, bringing Easter dinner with them (Judy will have a ham and a turkey here). It will be a great distraction to see everybody. Maybe we'll have an Easter resurrection for me, too.

St. Patrick's Week into Palm Sunday

I'm not sure why I haven't written more this past week. It could be that I'm feeling a little depressed, possibly due to the pain killers and my frustration at the slow pace of recovery.

It's not because there's nothing going on. It has been an eventful week.

On Tuesday I had the sutures taken out of my face. Aside from a modest, character-enhancing scar, the forehead looks pretty good.

I became increasingly moody as St. Patrick's Day approached. I had set SPD as my target date to be "better." As it became clear that I would still be far from well, I felt pretty unhappy about my inability to celebrate the holiday in my usual manner - playing music in pubs.

In the event, the day was really great, if not what I had originally planned. A good friend picked me up early Thursday morning to take me to Mass at St. Patrick's Church. Then in the afternoon, another friend took me out to Rare Olde Times Pub so I could see Suas (a band visiting from Ireland) and Uisce Beatha play their afternoon sets. My parents came into town to celebrate with the kids and me while Judy was out playing the night show with the band.

I managed to eat a little shepherd's pie, and after dinner, Mom & Dad and the kids and I took turns playing (mostly) Irish songs. I especially enjoyed Dad's renditions of Believe Me if All those Endearing Young Charms and Danny Boy on the harmonica. All in all, it was a good day.

Friday was even better for two reasons. First, Dr. Parker took out my feeding tube. Second, and better, he gave me some medicine to alleviate my nausea and to make it easier to eat. I'd been having a very hard time eating, and the medicine has hugely improved my ability to eat. I've eaten better on Saturday and Sunday than any time since I left the hospital. I also cut my daytime pain medication in half.

When I met with Dr. Evers last Monday, he suggested it was time for me to start pushing a bit. He probably didn't mean for me to push quite as hard as I did on Saturday. I began the day by riding with the Grand Marshall in the Richmond St. Patrick's Day Parade. In the afternoon, I was on stage playing whistle, singing back-up, and exhorting the crowd. The evening I mostly spent clutching my ribs and regretting the exhortation. Still, I don't completely regret it. It hurt like hell, but I was glad to be there.

This morning I resumed my full pain killer dosage, but I also went to Mass and have been eating pretty well. This afternoon I mostly napped.

This week is Holy Week, a good time for resurrection. I've only got two weeks to get well enough to start chemo, so I'm looking for more miracles.

I'll also try to write more.

Planning the next steps.

Recovery is a slow process, but I feel like I'm making progress, however modest.

This morning, Judy and I met with my oncologist, Dr. Evers. My blood levels are all normal. My weight is low, but not alarmingly so. He reiterated what he'd said before about what good news the pathological complete response is. He was also, though, careful to emphasize that there is still a significant risk of the cancer returning. To minimize that risk, we'll have some additional chemotherapy, then quarterly scans and check-ups for a couple years.

The therapeutic target is to remain cancer-free for two years after diagnosis.

My target is more like 50 years after diagnosis, but I'm willing to start with two years.

My surgery was three weeks ago. I understand that 6-8 weeks is a standard recovery time, so I'm half-way to 6 weeks.

We've scheduled chemotherapy to start at the 6 week mark, so it will be the week of April 4. Then I'll have three weeks off and have chemo again the week of May 2. If past is prologue, I ought to start feeling myself again a week or two after chemo finishes.

Although it will be two years before my doctors will breathe a sigh of relief, we're going to celebrate our victory over Cromwell so far with a big party. If we keep the current schedule, we ought to be able to have the Victory Party in late May. The kids have asked if we can rent a moon-bounce for the party and I can't think of one reason why not.

Tomorrow I get the sutures out of my forehead!

The long journey home

Recovery from surgery is a good bit harder than I anticipated, but I'm glad to be recovering at home.

In my last post I had predicted a release on Monday. Unfortunately, I took a fall, probably in my sleep, on Sunday night. My medical care professionals think I probably got up to use the bathroom, without fully waking, and without unplugging my IV pumps from the wall.

My own best recollection is that I was strolling through the basement of a grocery store in Japan, probably in the 1880s when I was smacked in the face with something hard. The blow knocked me to the floor. I couldn't move, except to flap my hands slightly, blow bubbles in my pooling blood, and moan. Because I was a foreigner and possibly also an intruder, I couldn't make myself understood, and no one was especially concerned with my plight. I was especially annoyed that God would let me go through the travails of chemo, radiation and surgery, only to perish alone and afraid on the basement floor of a Japanese grocery in the 1880s.

The plausibility of the Japanese grocery scenario only began to abate when I heard someone saying the name of my surgeon. I tried moaning Dr. Parker's name. Then I heard the distinctive accent of my night nurse, Mavis, and began calling out to her.

The next few hours were miserable, despite shaking the more delusionary aspects of the experience. Strapped to a backboard, rolled down to radiology, disconnected from my pain medicine pump (in my fall, the iv that had been sutured into my neck tore out), and effectively blind without my glasses (I'm going to give serious thought to getting LASIK surgery -- it is hard to overstate the disorienting effect of being sightless in a stressful situation), I was frightened, in pain, disoriented, uncomfortable and having trouble breathing. The oxygen mask seemed to aggravate, rather than improve my breathing trouble.

The radiologists kept moving me, or trying to get me to move into more painful and uncomfortable positions. I can recall one of the radiologists griping that he was having a hard time getting all my bones into the shots because I so big. He seemed particularly annoyed at the breadth of my shoulders.

I'll always be grateful to Mavis, who put on a lead apron and stayed with me throughout the radiology ordeal. She held my hand, talked to me encouragingly, and urged the radiologists to hurry the process along.

Once I was back in my room, Mavis hooked up the pca pump so I could resume taking morphine, cleaned and straightened out my glasses, and called Judy.

By the time the plastic surgeon came in the early afternoon, the morphine had kicked in, Judy, my parents and my brother had all been to see me, and my feelings of embarrassment where rising as my feelings of terror fell.

As it turned out, my fall only delayed my release by a day, but it kicked a great big hole in my optimism. It occurred to me that sometimes, that which doesn't kill us does NOT make us stronger.

My recovery from and adjustment to the surgery is taking more time and effort than I anticipated, and I'm dreading the notion of additional chemotherapy. I feel weak, timid pessimisitic. I suppose my pain medication could be contributing to my bleak mood, but I'm nowhere near ready to try to wean off it.

It seems ungrateful, now that I'm cancer-free, to be anything but jubilant. If I've accomplished the mission of my journey, though, I've still got a long trip to get back home to where I started.

Please keep praying for me and for my family.

Stealth Blogging

Jim's asleep upstairs, and I am blogging without permission to tell you all that he is home, home, home!!
Judy

Trying to get home.

We continue to make progress toward my release from the hospital. Last night I was able to give up my heart monitor, and consequently moved off the Progressive Cardiovascular Unit to room 623 on the floor where I spent my previous sojourn here at St. Mary's.

Today the nurses capped my feeding tube. I've been successfull in eating the "full liquid diet" for the past few days.

We're still working to find an oral pain reliever to replace the intravenous morphine. This is likely the last major obstacle to my release.

Dr's Parker and Evers have both mentioned the possibility of my being released on Monday.

Two weeks to St. Patrick's Day.

Yesterday I had my drainage tubes and foley catheter removed. I still have an abdominal feeding tube, a triple iv at the base of my neck, a peck of staples and assorted wound dressings. One of my iv's has a morphine pump attached to it.

I've still got substantial pain at and around my wounds. Stretching and walking will be among my main activitities today and tomorrow. One of my nurses told me this morning that she thinks I'm scheduled to start solid food tomorrow.

No word, yet, on a possible release date.

More progress.

I just met with Dr. Parker. After exchanging mutual compliments on my medical progress, and some unrelated chat concerning Irish movies, we moved onto the critical "what next" issues, to wit:

1. Chest drainage tubes - like having chuncks of hollow broomstick wedged into my chest - theses will likely, probably comeout tomorrow.This is generally executed by the surgeon.
2. Diet - we're jumping from "popsicles and ice chips" over "clear liquids" right to "full liquid" tomorrow. Somewhat benightedly, this does no include Guinness.
3. Abdominal feeding tube - stays in for a while longer.
4. Urinary catheter - likely will come out same day or day after chest drainaige tubes.

Give that back to a a MEEE! It's NOT A TOY and its MINE!!!

Thanks to Judy for taking up the blog while I was unavoivadably detained in surgery, ICU, Step down recovery , citzen reprogramining, the MATRIX, Terry Glilliam's Brazil, and brief hitch riding with Buckaroo Sajji and the Hong Kong Kavaliers. My apologies to anyone whose loyaltly, humanity or tererstrial orgins I may have disparaged during this period.

As Judy has faithfully rccounted, the chemo, radiation and surgery have all accomplished 100% of their desired result. Now it's just up to me to recover from the brutal effect of my medical miracles.

Dispatches from the Front

Jim had several important milestones today. The most important is that the barium swallow went well, indicating good healing in the esophagus, and his NG tube has been removed. (This is the tube that goes through the nasal passage down the back of the throat.) When I left the hospital today around 4, we weren't sure if the surgeon would get the results of the scan in time for the tube to be removed today. However, Jim called me around 6:30 (another first, a phone call) to say that the tube was out and he'd been allowed to have ice chips and popscicles. He's very happy about this, as is Ed, who has seen him tube-free.

Ed also reports that Jim's nurse thinks Jim is making among the best progress she's seen for this type of surgery. Did we doubt it? Not really, not in our heart of hearts.

His Eye Is on the Sparrow

I went to the hospital yesterday, seeing Jim for the first time since Wednesday. When last I saw him, he was still in ICU. He is on the ICU floor, but in a different unit. Jim is doing well. He was up in a chair, and went for a brief walk. We watched a little of the movie Patton on t.v. There is no doubt that he has a lot of work ahead, but he as already done the impossible, recovery from surgery seems pretty doable.

Today may bring some positive changes. If the barium swallow and CT scan are favorable, some of the tubes may be removed. That should increase his comfort level a great deal.

More news as it becomes available.

He Walks

Here are the reports from Jim's folks and Ed: Jim moved from the step-down unit to another area on the intensive care floor. He's now in a private room, to which he walked under his own power yesterday afternoon. They have dialed back the morphine a bit so that he can be more active. The plan calls for being up and walking twice a day. On Monday, he'll have a barium swallow followed by a CT scan to make sure everything is as it should be inside. If all is well, then the drainage tubes and the NG tube can come out. Jim expressed a fervent desire for this to happen. He is still hazy, but seems pleased with his progress. I get to see him tomorrow.

Every Day in Every Way

I only saw Jim briefly yesterday because of a wretched cold that I didn't think I should share. His mom and dad and Ed, however, report that Jim is out of ICU and was sitting up in a chair. He is still in and out alot because of the morphine, but is making progress. I won't see him today, either, because I ran a fever last night and Ed won't let me go to the hospital for 24 hours. But Jim's folks will be heading out soon and will bring fresh reports from our boy.

Say It with Me

PATHOLOGIC COMPLETE RESPONSE!! No cancer in the removed tissue.

Even Jim might find words inadequate today.
We couldn't be in this place today without everyone of you and without the grace of God.

Are we there yet?

Everyone tells me that the day after surgery is the worst day. It seemed pretty difficult to me. It took till about noon to get Jim's pain medication organized to everyone's satisfaction, but this evening when I saw him, he was dozing under the influence. I would guess he's moderately uncomfortable and a little anxious, but he's pretty fuzzy from the morphine, so he's not disclosing much. He did make a little joke with the surgeon, though, so he's in there.

Both the oncologist and surgeon, whom I saw this morning, were pleased with how our boy was doing. "So far so good, right?" I asked Dr. Evers. "So far so good," he said. ICU time is estimated at a day or two, followed by some time in the step down unit (ICU-lite), and then to a regular room on the surgery floor. Total stay is estimated (and everyone is pretty clear that these are estimates) at about 10-14 days. They say they'll let him try to swallow in about a week. I say, Yeesh.

How would Jim end this post? Let's try this: Blessed be God in the dark and in the light.

Everything's Gonna Be Alright

What you are waiting to hear: The surgery went smoothly, there was no tumor found, one lymph node was sent to pathology, Jim is not on a respirator, he is asleep under the influence of powerful pain medication, and in the care of the lovely Cathy up in ICU.

We had a long, long day but finally are home again after seeing Jim for about 5 minutes. The surgery lasted about 6.5 hours Dr. Parker was pleased with the results. No colon had to be spliced in, though Jim has very little original esophagus left. His mighty mighty lungs resumed breathing on their own. He was in recovery a long time because they ran out of beds in ICU. He was finally brought up about 8:00 p.m. His mom and dad and I saw him briefly and spoke with him. He is speaking, too, which allays one of his fears.

Thanks to you all who held us in your hearts today. We could tell.

Judy

Don't think about a white bear.

When I met with Dr. Parker last week, he told me he was "an optimistic, realistic cynic." That sounds just right, and pretty well aligned with my own general outlook.

Right now, though, I'm an optimistic, terrified, eager, anxious, over-imaginative supplicant.

I got some good news on Tuesday - no skin cancer! I didn't really expect any, but it was good to have an uneventful medical appointment.

My pre-admission testing yesterday was fairly uneventful as well. The testing was a very brief blood draw. The longer part was going over my history with the nurse, spending a couple hours in a context that forced me to think a lot about the surgery, and learning more about what to expect. Most startling, thought it should have been obvious, is that when I come out of surgery with an NG tube and possibly on a respirator, I won't be able to talk.

Loss of the power of speech is probably my deepest fear, and I've had nightmares since I was a kid (not constantly, but from time to time) where I needed to, but could not speak.

I trying to spend as much time distracting myself as possible. We're taking the kids to the circus tomorrow, and playing music at the pub tonight. Judy and I are also planning a last dinner out for my esophagus this weekend with a couple of very close friends.

Optimistically, and realistically, we have every reason to believe that the surgery will turn out great.

We'll just leave the cynicism aside for now.

Last whole week being whole.

Today is the feast of St. Valentine, whose mortal remains repose in a church in Dublin, Ireland. One week from today is my surgery.

I'm trying to keep busy during my last week with a full esophagus, in large measure to keep from spending any more time than I have to thinking about the surgery and, more daunting, the subsequent recovery. Time in the office, dinner out with friends, the circus with the kids, daily mass, an American Youth Harp Ensemble concert, home repair and maintenance, exercise, and my last appearance on stage at the pub for a while - these all feature into my plans for this week.

I've also got a couple of medical appointments. The second is pre-surgical labwork on Wednesday. The first is an unrelated (I hope!) baseline check-up with a dermatologist on Tuesday. I set up the dermatologist appointment last September when I was having my turning-forty physicals. As a blue-eyed, fair skinned, frequently sunburned boy of Irish descent, I had thought skin cancer was my greatest risk. I couldn't really think of a good reason to cancel it now. If it's all good news, well, I can certainly use the good news. If they have any concerns, we might as well take care of them now.

Because he doesn't have school on Friday, my ten year old son, Seamus, will play fiddle with us at the pub this Thursday. We're both really looking forward to it.

My Lenten Journey

Lent began yesterday. I've done lots of different things for Lent in my life. When I was a kid, I usually gave up dessert & sweets. In college one year I gave up alcohol. For several recent lents I've given up caffeine. One year, our bedroom ceiling collapsed on Ash Wednesday, and Judy and I were obliged to give up our bedroom until it was repaired just before Easter. That was an interesting Lent.

This year I'm giving up my esophagus.

Judy and I met with Dr. Parker today to get the lowdown on how it is going to go. We'd been hoping for two things: 1. that I'd get the less intrusive "blunt removal" (sort of like laproscopic surgery) rather than the full thoracic surgery with the deflated lung and cracked rib cage, and 2. that he'd be able to pull my stomach up to the remainder of my esophagus, rather than inserting a piece of colon.

Dr. Parker is very good at making one feel better about disappointing news.

On the first point, it turns out that because of problem I had in November with the mass pressing on my trachea, blunt removal is, as the medical people say, "contraindicated." Evidently, the trachea is pretty fragile at the point where it abuts the esophagus, and if there's any chance of them sticking together, it is necessary to be able to see everything with the naked eye.

As talking is a huge part of my vocation, and singing is a big part of my avocation, I've gotta prefer the method that poses the least risk to my trachea.

Plus, I've grown rather attached to breathing.

On the second point, it looks like it might, probably, possibly, not be necessary to splice in a piece of colon, though we are assured this works fine if it is necessary.

Best case scenario is one week in the hospital after surgery. Most common case is 10-12 days. Of course, if there are any complications - who knows. I'll come out of surgery with a tube in my nose, drainage tubes in my chest, and a feeding tube in my small intestine. 50% chance of being on a respirator.

While I'm disappointed, I'm not as upset as I expected to be. I'm glad to have a good surgeon who has a variety of tools at his exposure, and can choose the right one based on my needs, rather than his preferences. Also, knowing is always better than wondering.

So in the old Catholic tradition, I'll "offer it up" for Lent, and give thanks for the miracle of medical science.

I might also try a drop of whiskey at the pub tonight.

Mardi Gras Surprise!

Today featured some unexpected medical excitement.

Shortly before noon, Judy and I arrived at Henrico Doctors Hospital so I could have a "portagram" - essentially a dye enhanced x-ray of my port-a-cath to see why it didn't work on Friday.

The nurse first accessed the port with a Huber pin. Like the nurse at Johnston Willis on Friday, she could not get a blood return. They took me into the special procedures room, and another nurse prepared to inject the dye. First, though, she took a preliminary x-ray without the dye. Then she put down the dye syringe and asked one of the other nurses in the room to get the doctor.

"I'm not going to inject the dye, yet," she said. "I want Dr. Pieters to look at something first."

" You've obviously already seen something," says I. "What's going on?"

What was going on was this: the port-a-cath tube had broken in half, and the portion that was supposed to go to and stop at the entrance to my heart had slipped into my heart.

The nurses prepped me for a catheter while Dr. Pieters explained how he was going to use a catheter to go in through my groin to "lasso" the broken piece of the tube that had come to rest in my heart. He told me that there was a risk but not a likelihood that the procedure could mess up my heart rhythm. Then he went to call my oncologist to get his buy-in on the procedure, while the nurses scrubbed and shaved my groin and inserted an IV in my arm.

They asked whether I wanted to be sedated or not, averring that it would not be a long or a painful procedure. I said I didn't feel strongly about it one way or the other - I was equally fearful of the sedative and of the "discomfort." The nurse said she would not administer it right away, but keep it handy just in case.

The doctor started by administering a local anasthetic in my groin. I felt the needle pricks from that, then pressure and a more dramatic needle prick when he inserted the catheter. I could see the x-ray screen the doctor used to monitor the progress of the catheter up the vein to my heart. I couldn't really pick out the catheter on the screen, but from the movement of the x-ray machine up and down my torso, I had a pretty good idea of how things were going along, and they went rather quickly.

I think he managed to "lasso" the tube fragment on his first try, and the catheter came out with it even quicker than it went in. He showed me the loop top of the catheter when he was done, but not the tube fragment.

A nurse held pressure on the insertion wound for five minutes and then they rolled me out into a waiting area where I rejoined Judy.

I had to stay in bed with my leg straight for four hours, so they took me up to a room on the fourth floor (in the orthopaedic wing). Judy got me a sandwich (I'd been fasting since breakfast) and stayed with me until she had to go pick our daughter up from a music rehearsal. Ed came to wait the last hour with me and bring me home.

We got to the house just before seven, in time for the tail end of the Shrove Tuesday pancakes with the family.

Laissez les bon temps roulez.

Two weeks to surgery.

As Judy's comment noted on Friday, we got great news from the endoscopy ultrasound last week. Dr. Haverty told us he could not see ANY signs of the tumor or impacted lymphnodes. While this does not mean the cancer is necessarily gone, it is very good news.

We had a little trouble with my port-a-cath on Friday, so they inserted an IV in my hand, instead. Tomorrow I'll go to Henrico Doctors Hospital so they can do some kind of a scan, and maybe try to dissolve any clot or blockage they find.

On Thursday, the feast of St. Scholastica, we'll meet with my surgeon, Dr. Parker. I hope he'll be able to let us know what kind of surgery he'll do, and give us some idea of the anticipated recovery.

Next Wednesday, February 16, I'll go to St. Mary's Hospital for some pre-surgical labwork.

Two weeks from today, on the feast of St. Peter Damian, I'll have the long awaited surgery. I report to the hospital at 5:30 am for a 7:30 start time.

In between medical appointments, I'm trying to spend some time at my office.

Just keep swimming.

Sometimes even knowing that certain fears and anxieties are irrational is not enough to dispel them.

I know, for example, that my endoscopic ultrasound this afternoon will be relatively non-intrusive, painless, harmless and that it will not result in new, horrible revelations. It's just to help the surgeon plan the surgery. We already know what's there and how it's doing from the ct scan on Monday.

But this is the same scan I had in October that confirmed I had cancer and that it was serious. Also, the last time it included a needle biopsy that resulted in the perforation that led to the infection that put me in the hospital for eleven days. (No needle biopsy this time around). It's the same doctor at the same hospital.

So, while I KNOW, 100%, for a fact, indubitably, that I have nothing to worry about - I'm still a little anxious.

There's plenty of good stuff to focus on, though.

• Last night I played one and one-half sets with the band at the pub.
• The day before yesterday I attended the swearing-in ceremony of Virginia's new Attorney General, where I spoke to many friends and colleagues.
• I'm meeting with my surgeon, Dr. George Parker, next Thursday, to learn how he'll do the surgery, and what to expect.
• My surgery is scheduled (finally!) for February 21 at the crack of dawn at St. Mary's hospital.
• I'm feeling stronger and better every day.

So, in the words of the old Bing Crosby song, I'll accentuate the positive and eliminate (or at least repress) the negative.

We'll keep working the plan.

Cromwell's on the run

This afternoon we had a great meeting with Dr. Evers. He had the reports on the CT scan and the bone scan I had yesterday. Here is the good news:

• No additional cancer.
  
• The tumor is smaller - not just smaller than when I went into the hospital, but smaller than when they first saw it on October 28.
  
• Dr. Evers described the reports as "encouraging" and "very welcome."
  
• My blood numbers are good enough.
  
• I'm healthy and strong enough to move on to the next step.
  
• I'll have another endoscopy this week (NO NEEDLE BIOPSY!) for surgery planning.
  
• I'll meet with the surgeon, Dr. Parker, also, we hope, this week. He should be able to give us a date for surgery, likely during the week of February 21, and tell us whether he can do an endoscopic resection.
  

I'm relieved, encouraged, jubilant and eager for the next step.

Today is the feast of St. Brigit of Ireland. It will be an especially holy day to me from now on.

The Bitter and the Sweet.

This past week has been great, and I've been looking forward to next week since I finished chemo and radiation. Now that it is upon me, I'm terrified.

First, last week.

I've been feeling really well. Last week I:

• recorded a song,
• began reorganizing my work bench,
• went to my office twice,
• read over 1000 e-mails,
• repaired my daughter's lunch box,
• attended a conference call,
• attended a legislative dinner,
• attended a law firm reception,
• played the first set with my band at the pub,
• drove around a good bit,
• did 20 minutes on my stationary bike three days in a row.

My side effects continue to improve, except for the weird taste in my mouth which is the same or possibly worse, and the light-headedness which persists. While I still tire easily, it is less easily than before. I'm sleeping well. The esophagitis is dramatically improved. My appetite is ok (although nothing tastes quite right).

Tomorrow I have a CT scan and a bone scan. Physically, the worst part will be the barium swallow. When a picked up the container of swallow yesterday, the radiology attendant said something about a "bone injection". That sounded really bad, too, but Judy has since learned from two very reliable friends in the medical business that the injection will be by IV, and will not pierce any bones. IV's are business as usual by now, and no problem at all.

Hey, maybe the pernicious weird taste in my mouth will make the barium swallow taste good? Maybe?

Here's what I'm terrified about. On Tuesday, we'll meet with Dr. Evers so he can read tomorrow's scans, tell us how much progress we've made, and start planning for surgery.

I'm working hard to believe that the scans will show great progress, pointing to the less intrusive surgical approach, and a prompt schedule.

But I also can't help bracing for the impact of a less rosy outcome. I can't shake the prospect of hearing that the mass has not decreased or has increased, that endoscopic surgery is not feasible, that the five weeks of misery was a waste of time. I'm having trouble finding anything really solid to brace against.

Judy's plainly anxious as well.

I guess the problem with a moment of truth is its unmalleable clarity. Once the moment of truth has come and gone, all the other prior possibilities are foreclosed. Tonight, the scans have the potential to find anything. By this time Tuesday, only one outcome will have come to pass.

Let's hope it's a good one.

Better every day.

I finished chemo two weeks ago today, and radiation two weeks ago yesterday. Everyday I'm feeling a little better. I'm sleeping well and eating well.

Yesterday and today I spent some time in my office. I went through more than a thousand e-mail messages. On Monday, I went to a legislative reception and dinner and saw a lot of old friends. I'm planning to go to the pub tomorrow night and to join the band for the first set.

I still tire easily, and I get light-headed a lot. The esophagitis is improving, and swallowing has gotten a lot easier. I have visible (just barely) white hair on my head.

I remain very eager to get surgery scheduled, the sooner the better.

Countdown to CT Scan.

One week from tomorrow is the big CT scan. Then the next day I meet with Dr. Evers to get his read of the scan. We're on tenterhooks in the meantime.

This period of waiting and percolating is especially challenging to the old attitude. There's a little too much time for quiet introspection. I'm not quite well enough to be fully active and not nearly sick enough to sleep all day.

I've been trying to do at least one thing everyday - repair a faucet, set-up DSL internet service, record and mix a song, run an errand. Most days, one thing is all I can manage. Often, it is enough, too. Repairing the faucet took 45 minutes, tops, but I was able to spend the better part of the rest of the day feeling proud of myself.

We're really tired of the whole thing.

I keep telling myself that once the surgery is scheduled, we'll be on the fast-track back to Wellsville.

We'll see.

Snow day

There are five or six red cardinals taking aggressive turns at my neighbors' bird feeder. The bright red birds against the clean snowy garden look almost contrived. Where are the females?

Yesterday was a great day. I fixed a leaky faucet in the kitchen. Ed took me out to a music store to pick-up some cables and other recording gear. Another friend met me out at the pub and drove me home after the first set. I sang Four Green Fields with the band. I drank half a pint of stout.

My symptoms continue to abate, though more slowly than I wish. Maybe I'll get out to the office a few days next week.

For today, I'll relish the gift of a snowy day as only a non-commuter can.

Status report at one week after.

It has now been one week since I finished chemo. Dr. Evers predicted it would take about two weeks for me to shake the major side effects, so I'm halfway there.

I have been surprised that I've felt the effects much more this time. I think the cumulative effect of the rounds of chemo, plus all the radiation have an impact that is greater than the sum of their parts.

Of course, that's the general therapeutic idea, isn't it?

On the good side, I'm not feeling anymore appreciable nausea. Everyday I feel a little stronger. Plus, I'm growing some hair.

I won't dwell on them, but I do want to list the effects I am feeling.

1. General weakness. I'm feeling pretty frail. Simple tasks can be pretty exhausting. I miss my vigor most of all. More than my hair.
2. Esophagitis. I have some fairly constant discomfort in my throat and down my esophagus. Swallowing, even (or especially) liquids is tricky. I have to control the texture, quantity and, well, approach of each swallow or it can be pretty painful.
3. Dryness. My skin, my eyes, overall I need to hydrate from the inside and moisturize pretty aggressively from the outside. The swallowing thing means I have to be pretty intentional about drinking enough fluids, because sometimes it doesn't seem worth the effort.
4. Insomnia. This can be pretty dispiriting. Monday night, I didn't sleep at all. Tuesday, I moved to the living room couch around midnight and got some decent sleep in a couple of chunks. It's hard to work at sleeping, but I know I need to rest. I'm not napping during the day because I don't want to aggravate the insomnia, but I do spend a lot of time sitting or lying around doing nothing. See number 1.
5. Nutrition. I spend a lot of time planning what I'm going to eat, but I'm not generally hungry, and the swallowing effort is off-putting. I've lost a fair amount of weight, and not the right weight either. I need to be strong for the surgery, so I'm being deliberate about this. Fortunately, while I don't have much appetite, I don't have any nausea, either.
6. Addlebrained. This continues.

I was hesitant to make a list of my complaints, for fear it would snowball, but having done it, they don't really look that bad.

And I'm getting better.

Back from a dark place

Today is the feast of St. Martin Luther King. I haven't been to the mountaintop, but I travelled that lonesome valley. It seems like a good day to be back.

So where was I?

Oh yeah, all I have to do is rest up from the chemo and the radiation.

Big talk.

Remember the plan? It goes something like this:

1. use chemo and radiation to beat me within an inch of my life
2. recover enough to have surgery
3. have surgery
4. get more chemo.

Check off number one. I'm feeling much better now, so, I guess two is underway, but that inch of my life thing was evidently no joke.

My pastor, Fr. George Zahm came by this morning to visit and bring me communion. He called yesterday because he noticed I wasn't at Mass with the rest of my family. He's an exceptionally pastoral man.

One of the things we talked about today was what he referred to as my "ability to articulate" my experiences. I suggested it might be a more neurotic need than an ability, but it led us into a conversation about expression and empathy.

I've always been frustrated by the contention that an experience is incomprehensible to anyone who hasn't experienced it. It's usually framed something like this: "You could never understand because you're not a woman/black/Catholic/gay/cancer patient/teenager/poor/disabled and unless you've experienced what I have we don't have enough common ground to disagree about [whatever the issue happens to be].

This argument frustrates me because my most important tools for dealing with the world around me are words and imagination. Empathy and sympathy are, I think, extensions of imagination and are likewise critical tools.

If pressed, I'll concede that there are some ideas and experiences that are ineffable, that cannot be satisfactorily and completely conveyed by verbal expression. Most of these are transcendental, and art, music, poetry and imagination (as well as theology and spirituality) have their most important functions in helping us stretch across the inadequacy of straightforward verbal expression.

There are more things that probably don't need to be completely conveyed. I've got a clear enough picture of the atrocities of concentration camps, slavery, torture and genocide without imagining or confronting every horrible detail. A little bit is enough to give me the idea. I get that these are unremittingly bad.

There aren't nearly as many ineffable or unspeakable things as there are deployments of the "you can never understand" argument. Usually, "you can understand" is short-hand for, "I'm not willing to explain this to you and I don't trust that you really even want to get it." That's ok. Maybe you explained it to a lot of people before me and you're just worn out trying. If you're wrong about me and I do want to understand, then I'll find another way. You can doubt my will, but not my capacity.

All this aside, I'm not going to try to write about the dark places of the past few days. Not because I don't think you can or want to understand, but because, maybe, I don't really want you to.

It is enough to say that it was bad.

I'm doing much better.

Step two, full speed ahead. No looking back.

This little light of mine. I'm gonna let it shine. Let it shine. Let it shine. Let it shine.

Chemo ends today

My 5Fu pump ran until almost 2 pm today. Then we went out to the Virginia Cancer Institute for some neupagin to boost my white blood cells.

Because my nausea is has not abated much, they gave me some iv hydration and some more powerful antinausea medication.

Still feeling kind of bad. Can't eat. Hope to sleep it off.

Chemo 3.5

I am finished with radiation.

More to the point, radiation is finished with me.

I'll have no more taxol or cisplatin until after surgery.

I've got just over 20 hours of 5FU to go on my pump.

As pleased as I am to be through these milestones, it was hard to say goodbye to and thank the exceptional professionals who have helped me through this. I was never surprised by their courtesy to and grace with me, but I was surprised and moved by their collegiality and kindess to each other. The internal harmony which they bring to this inherently disharmonious process is comforting and inspires enormous confidence in me as the patient.

I must remember to strive to promote the same for my clients when I return to the practice of law.

I hope to sleep through most of the next 20 hours. I've got no appetite or energy, so I might as well. Then I'll wake up long enough to take off the pump, and settle in for a real rest.

J'aime et j'espere.

Chemo 3.4

Viscious weekend break in the action complete. I pulled the Huber pin for the FU on Saturday at 5 pm. Went to 11 o'clock mass on Sunday. Sunday night brought nauseau and vomiting, further irritating the esophagitis. Rest of the weekend was drug-induced sleeping.

This morning I was feeling really frail. Could only east half a piece of toast an a glass of tepid water. Home health nurse came at 7:00 to install new Huber pin and remaining dose of 5FU. Pump seems more finicky than before, with frequent "high pressure" alarms.

Radiation and chemo uneventful, if uncorformtable today.

2 more doses of radiation tomorrow.
1 dose of cisplatin, plus attendant meds and hyrdation.
Should finish up current 5 FU dose by midday on Wednesday.

Then no more radiation. No more chemo till after surgery.

Good night.

Chemo 3.3

No flush this morning, but I'm feeling pretty battered.

I took some darvocet this evening to beat back the encroaching joint pain, and am thinking seriously of taking an antianxiety pill for the first time in my life, to quell my rising impatience and to help me sleep.

I remain grateful and amazed at the generosity and strength of our many friends, whose faith and kindness is sustaining me and all my family. I can't imagine how bleak this experience would be without that support.

Remaining in this round:

1. 5FU through about 5 pm tomorrow, then a break until 7:00 am Monday morning.
2. Four more doses of radiation on Monday morning and afternoon, and Tuesday morning and afternoon.
3. Two more doses of Cisplatin, one each on Monday and Tuesday.
4. 100ml more of 5FU (about 50 hours) finishing on Wednesday afternoon.
5. Blood work, and possibly blood cell booster shots late Wednesday afternoon.

Then it's just wait and percolate until my CT scan on January 31 and surgery at some indefinite time after that.

My life goes on in endless song,

Above earth's lamentation.

I hear the real though far off hymn

That hails the new creation.

No storm can shake my inmost calm

While to that rock I'm clinging.

If love is lord of heaven and earth,

How can I keep from singing?

Chemo 3.2

Another long day of treatments.

The combination of radiation and chemo had me pretty flushed this morning. I remember the same thing on the second day of the last round of chemo. They attributed the flush to my antibiotics and took me off them, and I was fine by the third day. I'm not on any antibiotics now, so it will be interesting to see if the flush appears again tomorrow.

No way I could even entertain the thought of going to the pub tonight. I'm really weak, tired and only semi-aware of what's going on around me. My esophagitis is getting a little more insistent, but still no pain. Anxiety level remains manageable. Appetite rapidly waning.

No reflections tonight. Except this - two down, three to go.

Chemo 3.1

Today was fairly brutal physically, but mentally I always seem a little better off when I'm in the thick of it than when I'm only anticipating. That was true again today.

The home health nurse and radiation therapy both started and finished on time. Chemo started timely, but took a lot longer than I expected, so I was there from 9:00 am to after 2:00 pm. I felt bad for the friend driving me today, but he assured me it was ok.

I watched Troy and half of Starship Troopers 2 in chemo, and neither of them made me cry. I wouldn't recommend them either, though, unless, like me, not crying is your main movie selection criterion. (By contrast, last time around I cried twice, TWICE, during Spiderman 2).

When I got home, I napped until about suppertime, but am feeling pretty good now - probably a lingering effect of the steroids.

Tomorrow, no home health visit and no Taxol, so chemo should not run as long. Also, tomorrow we resume twice daily radiation for the duration of the schedule.

I had a great chat with an old friend on the phone this afternoon that really cheered my up a lot.

One day down, four to go.

Brace for Impact

Here it comes.

Tonight at 10:00 pm, I pop a handful of steriods to get ready for chemo. Tomorrow morning at 7:00 a.m., I pop another handful of steroids, along with my usual morning drugs, and Home Health Partners' Nurse Ann will be at my house to hook up the 5FU pump. At 7:45, one of my friends will drive me to St. Mary's for my 8:15 radiation treatment. Then we'll go to the Virginia Cancer Institute infusion center for more steriods (intravenous this time), a massive dose of benadryl, some powerful anti-nausea medication, some hydrating saline, some other stuff I can't keep track of and a dose of taxol and a dose of cisplatin, these last two being actual chemo-therapy.

Despite have gone through this chemo course twice before, I'm still apprehensive because:

1. I've been through it before and know what to expect. Although I'm apparently a model chemo patient, it is still a hateful, disgusting experience that I'd forego if I weren't more fearful of dying from cancer; and
2. I'm already feeling lousy and weak from the radiation, though, again, not as lousy and weak as everybody seems to think I should feel; and
3. I can see the end of my presurgical treatment, tantalizingly near, just a week away. You know how you can sit patiently on a plane through boarding, take-off, inflight movies and tepid "meals" for hours on end, but that last few minutes while you're waiting for the inexplicably slow people in front of you to retrieve their freaking carry-on luggage and get the HELL OFF THE PLANE can seem interminable? It's like that. Only more.

Still, I'm upbeat about the final lap. I've got action adventure movies to watch. Our feeders have resumed feeding us. My parents have arrived to maintain the kids' normal schedule of eating, sleeping, bathing and going to school and assorted lessons and activities.

My doctors aren't worried, or at least they don't seem as worried as they did when we first met. I met with Dr. Trivette (radiation oncology) yesterday and Dr. Evers (oncology) today. Like Dr. Rowles last week, they seem pleased with my condition and bullish on my progress.

So, I've got five more days of treatment, with a weekend in the middle. Seven days from today I'll be done with radiaition and (except, possibly, for the cursed 5FU) with pre-surgical chemo. On the 12th I'll get some blood boosters, and then I'll percolate for a couple of weeks. I'm advised that even after the treatment stops, I'll feel worse before I feel better, but that in two weeks or so, I'll start to improve.

On January 31, I'll have a CT scan to see how it all worked. Then on February 1, I'll meet with Dr. Evers to review the results of the CT scan, discuss doing an endoscopy (but NO BIOPSY) and see about meeting with Dr. Parker to discuss scheduling surgery.

Oof.

Please redouble the prayers, positive vibes, etc., this week.

For auld lang sine, my friends.

Didn't get to the cocktail party or the pub last night. Needed to rest.

Also, no tuxedo or champagne tonight. I'm going to bed as soon as I post this.

Here are my resolutions:

1. Beat cancer.
2. Celebrate victory over cancer. I'm thinking huge party with bands, tent, food, etc., for all the people who've been so great to us and are helping us on the road to victory.
3. Remember all the lessons I'm learning. Share them with others so they don't have to learn them first-hand. Incorporate them into my life.
4. Make a mighty fresh start when I'm done. Take back the best parts of my pre-cancer life with a strategic plan, a quick start and a dynamic edge.
5. Cherish the amazing people in my world. Repay my debt to them by using my gifts to help others wherever and whenever I can.

Happy New Year!

Status report

I have to acknowledge that the raditation is starting to wear me down a bit. My fatigue is increasing, and I can feel my esophagas rattling around if I move too quickly, especially going upstairs or standing up. More lightheadedness, too.

On the other hand, I'm not actually in pain, which is a nice surprise. Also, it is evidently pretty late in the treatment course for me to be just starting to experience these effects - I only have seven more days of radiation to go, five next week and two the week after.

I met with Dr. Rowles (infectious diseases). I felt a little sheepish about telling him I've been off the antibiotics he prescribed since my second day of chemo. It was actually Dr. Evers who took me off them, and Dr. Rowles was not at all put out. He was pleased that I'd not had any fever in the interim, and seemed content with my progress. We also talked about the remainder of my chemo and radiation treatment and was interested in the surgery. He had nice and reassuring things to say about my surgeon, George Parker.

Dr. Rowles wants to know when my surgery is scheduled (me too!) and to hear from me if I have any new fever or other issues. We decided not to schedule a follow-up appointment for now. He also said he was "impressed" with my attitude and especially that I played with the band last week.

I'd like to play with the band again tonight, but I'll have to feel better than I have the past couple evenings to pull it off. There's also an important law firm event this evening that I'd like to attend, but, again, it will depend on how I feel.

Some of the musicians in Judy's family are coming to the house this afternoon. Judy's family always gathers for music sessions at the holidays at her parents house. This is one of my favorite traditions, so Judy asked her brother and uncle to bring the session to us. What great in-laws!

I'll try to get some rest this morning, so I can enjoy the afternoon and have a shot at the evening.

Good news.

For the next week and a half, my principal task is to get ready for the last week of radiation and presurgical chemo.

This morning after radiation therapy and my weekly planning x-rays, I met with Dr. Trivette, my radiation oncologist. He continues to be pleased with my tolerance of the radiation. I told him about playing music at church on Friday and at the pub on Thursday, and he seemed a little surprised at my activity level. I confessed to rationing my energy for the things I really wanted to do. I also noted that I spent a great deal of time doing nothing at all, and that I'm feeling a little more esophagitis and some light-headedness. None of these surprised him at all.

I went for my weekly blood tests at the infusion center late this morning, expecting to submit to procrit and possibly neulasta (sp?) shots. Last week I was borderline, and talked the nurses out of administering the procrit, for which Dr. Trivette chided me a bit this morning.

To my surprise and delight, my red cell count turns out to be higher than last week, and my white count remains within tolerances, so there was not even an offer of the shots. My blood counts are actually improving without the medicine.

No philosophy today. Just contentment with this morning's medical reports and resolution for the next 2 and 1/2 weeks.

Happy Christmas

By virtue of the creation, and still more of the Incarnation, nothing here below is profane for those who know how to see.

-Pierre Teilhard de Chardin

Earlier this week, after dinner, my 10 year-old, Seamus, said:

"Do you know what you can say when people ask you why you're happy? Just say 'Why not?'"

For me, this Christmas has made it a lot easier to say "why not be happy?" I've got my family around me, friends and neighbors who are showering us with grace, and every prospect of beating Cromwell and the Roundheads into oblivion. I got to make music with my band at the pub on Thursday evening, and with my family at church on Christmas Eve.

Actually, my insights aren't as good as Seamus's. I'm still looking for reasons to justify a choice to be happy. Seamus can see that you don't really need a reason.

He's right.

As a lawyer, I know I can always find some justification for nearly any choice. I can give you fifty reasons why I should be happy, and just as many (or more) why I should be angry, sad, bitter or despondent.

But the only reason that counts is that I can choose happiness.

I know not everybody can make that choice. Depression, chemicals, trauma - lots of things can take away someone's power to choose the edifying over the stultifying, living over dying, flourishing over surviving. And it would be stupid and unfeeling to tell someone bound in those chains to just cheer up.

I'm convinced that for most of us, and certainly for me, we get to make a fundamental choice about how we respond to creation, the good and the bad. We make this choice over and over and over. Eventually, we can form a habit of responding one way or the other. We can decide to change that habit, but it isn't easy.

New facts and circumstances can also shock us out of our habitual view of the world - a diagnosis, an epiphany, a miracle or a disaster.

I think Sartre wrote (possibly in No Exit?) that "Hell is other people." My recent experience suggests that Heaven is other people.

What if the final judgment is our own? What if, faced with the beatific vision, we each just get to choose heaven or hell? What if that choice is unconstrained by the Creator, but heavily influenced by the habits of our life? Which one would you choose, right now?

What say we get a head start on it, and choose heaven today? And tomorrow? And the rest of our lives?

I'm not saying it'll be easy. Sometimes it might be impossible.

But if we can do it -

Well, as Seamus asked, "Why not?"

Merry Christmas.

Halfway to Somewhere

This morning I had my 17th of 34 doses of radiation therapy. I have now had half the doses I will have before surgery. What's more, I've now had half of my lifetime limit on radiation therapy for this area of my body. After January 11, I can never have any more radiation therapy in this area.

That's an aggressive treatment plan.

Yesterday, I started to feel the first noticeable effects of the radiation. I have a slight catch in my throat when I swallow, especially liquids, and my fatigue level is increasing for the first time since I finished chemo. I tried to persuade Dr. Trivette that the catch in my throat is related to my head cold, but he is quite certain that it is from the radiation. He's a little surprised that I'm not feeling any more discomfort than I am.

I've got a little more Christmas shopping to get done today and tomorrow, so I'm going to try to ration out my energy to get that done. I also have some gifts to deliver.

Most of all, I want to play (at least the first set) at the pub on Thursday and at Christmas Eve Mass with the family on Friday. As usual, I expect to get by with a little help from my family and friends.

17 doses of radiation down, 17 to go.

On Grace & Joy

On Grace.

I thought by now that I had learned how to graciously accept the generosity of the many remarkable people in my life.

This shouldn't really be hard. When people do nice things for you, you should thank them, thank God for putting good people in your life, and honor the gift by enjoying it.

It's easy to complicate it, though. Sometimes you feel like the gift is too much, the gesture too generous. You engage in silly assessments like whether you deserve the gift, whether the giver has overestimated your need, whether other people, more deserving or needy, are the beneficiaries of similar generosity.

At least that's what I do. Still.

So anyway, thanks. I'm grateful. Your gift is just what I needed, even though I don't deserve it. I don't deserve a friend like you.

Thank be to God what we deserve rarely enters the equation.

Thanks be to God for you.

_______________________________________

On Joy.

I'm feeling great. Chemo ended a week ago, and doesn't resume until January 5. Radiation hasn't caused any irritation so far. My doctors are optimistic. If all continues to go well, I'll finish raditation and my last pre-surgical chemo course on January 11. Then by the middle of February, I should be ready for surgery. Then recovery, and two more courses of chemo.

Some reassuring perspectives:

1. I've completed 2 of my 5 weeks of chemo.
2. I've completed 15 of my 34 doses of radiation.
3. One week after the completion of chemo and two weeks into radiation, my greatest ailments are some slight fatigue, slight addle-brain (at least I think it's slight) and a cold scalp.

Today, Seamus, Mairead and I made Christmas cookies while Judy and Callaghan were at the ballet with friends. One friend and his young son came by for a couple hours in the afternoon and we played music with the kids. Another friend came by later and we had tea and a good chat.

I'm very hopeful that I'll be singing and playing with the family at Christmas Eve Mass, and my brother Dan has agreed to play and sing as well, just in case I'm not able enough. My parents, brothers, sister and their families will ALL be here on St. Stephen's Day.

I'm a very happy guy.

Touching peace

I have lived a large portion of my life in anticipation of some better future. High school anticipated college, which anticipated law school. Law school anticipated graduation, getting a job, passing the bar. These anticipated making partner, making equity, building a practice.

Not that I didn't enjoy the journey - if I didn't stop to smell the roses, I certainly appreciated them on the way. Music, art, literature, friends, family, faith, celebration were always with me.

It was really not until my late thirties, very recently, though, that I let go of the idea that, if I could just get through the now, then everything would come together neatly at some point in the not far distant future.

Up to a point, this isn't all bad. It is good to have objectives, to work toward something, to plan and prepare.

There is a risk, though, that you'll make some bad decisions if you discount the importance of the present. I have to eat right and exercise so I can live well now. Sacrificing in the present for a future value is good, but wasting the present because only the future matters is not.

I remember my grandmother telling me, many times, when I was a child not to "wish my life away." This usually came in response to an "I can't wait until . . . " from me. I can't wait until Christmas. I can't wait until school's out. I can't wait until we come home.

Recently, in my mid to late thirties, I've done better at this. Maybe because I'd checked off most of the things on my original list - family, check, partnership, check, band, check.

I'd been doing a pretty good job of exulting in the present. These are the golden days. My life was great - not just the accidentals, but the essentials. And the accidentals, too. And I was appreciating it.

Usually, these stories have some "but" in them. "But I knew something was missing." "But I wasn't really happy."

Not me. Sure, I had bad days like everybody. There were challenges that frustrated me. I struggled. But I knew, felt and was grateful that I had it good. Really good.

Enter cancer.

All of a sudden, my life is completely different. There's no transition period. There's no prep course. Everything I love about my life, including my life itself, is in jeopardy. In a particularly selfish moment early on I told Judy that the prospect of my death was worse for me than her, because she would only lose me but I would lose everybody.

So now I find myself clenching. I can't wait until chemo, radiation, surgery are over. I can't wait until I'm back to work, back with the band, back in the saddle. If I bite down hard, I can endure this ordeal and then resume the program already in progress.

I've even fantasized about a drug that could knock me out until it's all over, and I can awake, cancer-free, to start back where I was interrupted.

But I hear my grandmother's voice - don't wish your life away.

There's so much more going on around me than my therapy. Radiation takes less than an hour each morning, travel time included. Even if I don't feel my best, I don't always feel my worst, either. I'm spending more time with Judy than I have since we were in college, and I get to interact more with the kids than ever before.

I'd been thinking of the support of our friends and family as something to help us through our ordeal, but when I reflect honestly, I get a glimpse of the truth that it is much more than that. I've been privileged to hear, see and learn so much about the fundamental goodness and power of people and our world.

One of my friends gave me a book called "Touching Peace." Though it is the voice of a Buddhist monk, it is speaking the same message as my grandmother's. It is not enough for me to withstand this period of my life - I have to embrace it. I need to embrace it.

This morning, as I was waiting to go into radiation therapy, the patient who precedes me every day came out of the treatment room. She is probably in her late sixties or early seventies. As usual, I smiled and said good morning. She smiled and returned the greeting.

Then she stopped. She said "I feel like we're getting to know each other," and she told me her name. I stood up and introduced myself, too. We shook hands and smiled again. She turned to leave as I was called into the treatment room.

"See you tomorrow," she said.

Every moment has holiness in it.

I just have to reach out to touch it.

No whining

Yesterday, I told Judy I miss my hair, and she mentioned it to me again right before we went to sleep.

"When I said, 'I miss my hair,' I meant 'I miss myself.'"

"I know that's what you meant."

It is helpful to have someone around who knows what you mean. But it is hard, too. You can't really fool them, and you might spend a lot of time and effort trying to anyway.

And, I guess, I have been trying, sometimes. I still can't let go of the notion that I should be strong for her, for the family. That I should smile bravely, crack a rueful but hopeful remark, and charge up the hill with my "great positive attitude."

Sometimes, though, I'm just too tired. Or too weak.

Or I can't think of anything to say.

ME!

So, Judy suggested I might want to find someone else to talk to about what's going on in my head. A professional.

This is a new idea for me.

I have long been an advocate of counseling - for other people. One of my best friends is a counselor. I've seen it produce great results.

I just always felt that somebody like me - the opposite of a private person - was, if anything, a little TOO in touch with my thoughts and feelings, especially where they concerned my favorite subject - me.

On the other hand, Judy is without a doubt, one of the smartest and most intuitive people I know. And, next to me, she has probably spent more thought on me than anyone else.

And this is the first time she's ever suggested counselling to me.

Despite this blog, despite my openness with Judy and the other great people around us, there probably are some thoughts and emotions I could use some help with. While far from dominant in my mindscape, the possibility of my death is hard to discuss with anybody, and especially with Judy, but the issue has a certain weight that it did not have prior to my diagnosis. Also, with all the encouragement I receive (and need) for my "great positive attitude," it seems disloyal to bleed off some of the less positive thoughts and emotions from time to time by giving them vent.

I don't know whether I'll pursue counselling or not, and I may not disclose here whether I do.

But I will think about it.

Patience

Have you ever wondered why the subjects of medical services are called "patients?"

If I did, it was not for long enough to tease out an answer.

I'm curious about the etymology, but not curious enough (or energetic enough) right now to figure it out. Maybe if I had on-line access to the OED?

Anyway, it makes sense to me now. I've heard and read a lot about how important a positive attitude can be, but the virtue I need most now is patience. Impatience is a deadly trap for hope. Impatience is the advance team for frustration and despair.

Today, I showered, dressed, went to Mass, came back home and went to bed. I slept until evening, then got up to spend a couple hours with my family. I'm fading fast, and will be back in bed soon. I hate it.

But for now, I guess, that's my job. Sleep. Let the chemo percolate. Be patient.

If only I could be patient a little faster.

Fifteen minutes.

Fifteen minutes.

Sometimes, fifteen minute increments are all we can manage.

Sometimes, fifteen minutes is enough.

Fifteen minutes ago, I finished this round of chemo, turned off the 5FU pump, and pulled the Huber pin out of my port-a-cath. Fifteen minutes before that I started gathering up the gear to do it.

I'm finished with this round. Week one of chemo plus double radiation is done. Next week and through the rest of the year, it's once a day radiation on business days. Next round of chemo is not until 2005.

That's more than 15 minutes from now, so I'm ok.

Holding on.

Today was my second to last day at the infusion center and of double radiation. Looks like the 5FU pump will probably run into Sunday.

My knees ache. My ankles, shins & feet, too. Still groggy and foggy, but sleep is elusive. Too worn out even to watch the band at the pub tonight.

Maybe tomorrow will be easier. Certainly, next week should be a little better without the chemo.

Cancer-fighting is a full time job.

Rule 1: Have a plan.
Rule 2: Work the plan.
Rule 3: Be flexible enough to adapt the plan to unexpected contingencies.

We had decided that I would drive myself to radiation this morning so Judy could have a little time off. Also, one of our great friends would take me to chemo and afternoon radiation.

I got up extra early this morning because I felt kind of uncomfortable and so that I wouldn't feel rushed as I prepared for my solo radiation outing. We'd bought some new flexible disposable razors, yesterday, so I had a go at shaving my head without any help as well. I only cut myself twice - once on my scalp and once on my left ring-finger.

At the breakfast table, Judy said she was going to go to morning radiation with me after all, but she consented to let me drive. Unfortunately, the radiation therapy machine was on the fritz, so we were sent back home, right away. The technicians said that we'd just add another session to one of the days scheduled for a single shot.

We were a little bit dubious about that approach, but were at a loss for alternatives. Judy was especially concerned about the importance of having the double radiation days synchronized with the chemo course, and went so far as to pull out and peruse her copy of the Harvard study in the car on the way home.

At about 10:30, the radiation oncology technician called the house to say that Dr. Trivette was not content to add a second treatment on a different day, and wanted us to go to the satellite treatment center on Staples Mill Road. Our technician from St. Mary's would meet us there at 11:15.

This sounded better to us, but threw a monkey wrench into the plan for our friend to pick me up at the house at 11:30 to take me to chemo. Judy called the friend and told him that she would drop me off at chemo after the rescheduled morning radiation and asked if he could pick me up after chemo, take me to my afternoon radiation and then bring me home. He readily agreed.

Radiation therapy at the satellite facility was prompt and uneventful. Judy drove me to chemo, and wouldn't just drop me off, but came in to make sure I was properly settled in before she left. We had a few awkward moments once I was settled. She seemed conflicted about leaving me. After a bit, she asked why I hadn't fired up the movie on my computer. She said she was waiting for me to start the movie before she left. I'd been waiting for her to leave before I started the movie.

Both in the hospital and at the infusion center I had persistent occlusion alarms on my IV pumps. Finally, the nurse today took my saline drip out of the pump and let it drip just on gravity. This was so much more effective that she did the same thing with the Cisplatin. As a consequence, I finished up at 2:15 instead of 3:00.

This meant I had to wait a little longer for my 3:30 ride, but as I mentioned before, my relationship to the passage of time has become a bit more whimsical of late, and the wait seemed quite minor.

At least five hours must separate my two daily radiation treatments, so, we had a little time, and went to Bob Evans where I had a burger, and my friend had a truly bottomless cup of coffee. Then we went to St. Mary's where the equipment was all back in service and I had the last radiation treatment of the day.

I've done a small amount of on-line Christmas shopping and some packages had come in today. Also, my brother Tim and his family sent us a huge package of Lance Armstrong - Live Strong bracelets.

I'm getting weepy again, especially concerning the many prayers, rosaries, masses, cards, messages, dinners, phone calls and other generous gestures on our behalf. I'm attributing it to the chemo and to my Irish/French/Apache heritage. Extravagant kindess, nobility, courage, sacrifice and generosity are the most moving things I know. I'm surrounded by people from whom these qualities flow constantly.

At Bob Evans this afternoon, my friend told me he was sorry I have to go through this, and that if he could make it go away or make it so it had never happened, he would. But he also said he was grateful for the opportunity to rally with our other friends to help me and my family, that as humans we need opportunities to offer help and support, and that too often people who need help pull away from the ones who need to help them.

I was hard pressed to answer. I said I understood.

Maybe I'm starting to.

Synapses, shmynapses.

I think my course of therapy is harder on the people around me than it is on me.

My discomfort is relatively minor. The main effects are a sorty foggy dopiness. I'm generally aware of what's going on, and I can manage some moments of sharper clarity and moderate effectiveness, but for the most part, I'm just not firing on all cylinders. This is mildly disconcerting to me, but, I think, an insidious burden on my household.

Some examples:

• This morning, I was aware that it was rainy out, so I put on my hiking boots to keep my feet warm and dry and to help keep my footing secure. Nevertheless, I slipped on the back porch steps and fell. No great damage - I bruised my back and had a bit of a start;
• At Einstien Bros' bagels this morning after radiation, Judy noticed that my hands were shaking as I ate and drank;
• In the car, I found it took particular effort to aim my finger at the buttons I wanted to press on the radio;
• All the extraneous and wrong words in my posting yesterday (and likely today);
• Increasing "tip of the tongue" effect where I know what I mean, but can't come up with the words;
• An ambiguous grasp of the passage of time;
• Having to retype this blog entry in its entirety because I did something wrong at the very end of the first effort and lost it all.

Judy is a rock, but this is wearing her out, both the demands of my schedule and the constant effort of looking after and worrying about me. She also picked up a bug from one of the kids. She's on antibiotics, but really needs some good rest.

I contacted a friend this afternoon who'd offered to do some driving this week. He'll shuttle me to chemo and radiation tomorrow afternoon to give Judy a break. That should help.

I'm 2/5ths of the way through this week, and so far, well - so far.

Fear and loathing in cancer-land.

"Cowards die many times before their deaths;
The valiant never taste of death but once."

-William Shakespeare, Julius Caesar, Act II, Scene ii

I've been thinking a lot about the feedback I've been getting from this blog - not just the only postings, but also the e-mails, phone calls, cards and conversations. A lot of the reactions have been really surprising to me.

I'm really only blogging for two reasons - 1. to keep my family and friends (a much larger group than I had ever imagined) informed as to my progress, occasional setbacks and frame of mind, and 2. to have an easy, informal, uninhibited outlet for my thoughts, feelings, hopes and anxieties.

There have been some surprising consequences and reactions.

1. Lots more people are reading this than I expected or intended. I'm astonished at the number of people who've told me (or who I've heard indirectly) are checking in every day or week. For reasons I've explained in previous entries, this doesn't bother me a bit, and is very encouraging and oddly flattering. Most of these folks have assured me that I and my family are included in their prayers, so I say - the more the merrier. Come one and all. Still, I'm a little puzzled.
2. Many people have told me that they are drawing inspiration, courage or perspective from the blog. Some of them are generously if undeservedly attributing these attributes to me as well. This is simultaneously gratifying and unnerving. I had a conversation Friday night with a wonderful friend who opened with something along the "you've been such an inspiration to me" lines. My reflexive response, which I said to her goes something like - come on, don't' get carried away, all I'm doing is walking the path before me and reporting what happens on the way. My friend elaborated further. She said she is facing her own medical challenge, and that when she reads the blog, it makes her feel like she can't be angry or pissed off because of my "positive perspective." I told her, and I want to be clear here, too, that she has every reason and right to be angry, irritated, scared, frustrated. I am or have been. Plenty. The only insight I have, and it's certainly not an original thought, is that there's no point in letting anger, irritation, fear and frustration drive out everything else. We can't choose the feelings we get, but we can choose which ones we're going to nurture and act on.
3. A number of people are urging me to turn the blog into a book. This suggestion has come from diverse and surprising sources. It is a flattering suggestion, but I can't really think about it or pursue it now. I also don't want to change what or how I'm writing because I'm looking forward to turning it into a book. I don't mind the suggestion, but I hope my friends will understand why this just can't be a priority for me now.

So today was a great example of how much fear and frustration still dogs me. We were swimming in dread this weekend in anticipation of starting radiation and resuming chemo today. I told Dr. Trivette that this was one of the few times I've found my imagination to be a disadvantage to me. Judy said this morning she didn't think we ought to have to go through radiation and chemo tonight because we'd been through it 150 times in her dreams last night.

As it turned out, the day wasn't so bad at all. I got up early to shower, eat, and take some steroids prescribed to help me through the Taxall. The home health care nurse arrived promptly at 7:00 to install the new Huber pin and the 5FU pump. He was done early enough that Judy and I had time to drop off a DVD at blockbuster on our way to St. Mary's for my first radiation treatment of the day. The radiation was uneventful and prompt, and we arrived, almost timely, at the Virginia Cancer Institute for chemo.

We had a few nice surprises there. First and foremost, the Taxall was ONLY ONE HOUR instead of the four hours it had been in the hospital. I had a few intravenous drugs before the chemo, including more steroids, benadryl and something to prevent nausea. The Cisplatin was only a half hour. Only the saline drip at an hour and forty-minutes, approached the two hour administration in the hospital.

Ed met us at the infusion center around 2:00 to spell Judy and take me to my second radiation treatment when I was done with the chemo. Instead of being late, as anticipated, we got back to St. Mary's fifteen minutes ahead of schedule, and we were in and out in under an hour, including a detailed meeting with Dr. Trivette.

I feel kind of groggy and tired, and I've had some trouble saying certain words - for example, when talking to my mother on the phone, I referred to Judy by my sister's name, and when I wanted a pillow, I asked Judy for a fiddle.

But I didn't die of anenphalactic shock or fistules in the chemo chair. The radiation machine didn't malfunction and burn or blind me. I didn't get the beating I expected today. Instead, we just walked the path in front of us, with inspiration and perspective from our family and friends, great performance by our medical team and all the courage and faith we could muster.

Take a deep breath.

In my post on Monday I wrote:

"I expected to start dreading the next round of treatment this week. Instead, I'm impatient for it to start. I feel recovered from the last round, and I want to get it over with. "

The treatment resumes tomorrow. The dread started on Friday and is fairly well established now. I have some countervailing thoughts and emotions, but impatience to start is not one of them.

I had big plans for this past week. I figured the effects of the last round of chemo would be fairly well dissipated and that it could be my last chance to be very effective for a while.

Very effective turns out to have been a bit ambitious. On Friday, for example, I went into my office intending to do four discrete, manageable tasks. I accomplished one of them, and half of another that wasn't on the list but seemed more pressing by the end of the day.

I should be (and am) glad about what I did accomplish. But I'm frustrated at not being able to execute more. It's like trying to type while wearing oven mitts - I know what I'm doing and how to do it, but everything takes a more effort and time than I think it should.

I have a friend who, due to a neurological disorder, uses a wheelchair most of the time. He joked one day that he doesn't get enough credit for just getting himself up, bathed, dressed and fed every day. It's fairly clear to me now that he's right. He doesn't.

Yesterday, I took the Huber pin out of my port-a-cath after my last dose of Invanz, and took a long, hot shower. The home health agency will put a new one in on Monday when they start my chemo pump for the 5FU.

Setting aside the dread and frustration - and I do set them aside, 'cause what else can I do with them? - I'm feeling good. Four of my best friends from my years at U.Va. came a long way for a daylong visit yesterday. I had told them several times not to come, and I was delighted and grateful that they did anyway.

Today, we'll go to mass and with friends to the symphony. And I'll take a long shower. Maybe 2.

Tomorrow -

Well, I'll deal with that tomorrow.

Fine, thanks. How are you?

I was surprised twice this week by contacts from friends who did not know about my cancer. One phone call. One e-mail.

You know how awkward it can be, under normal circumstances, when you ask somebody casually how they are, and they give you a decidedly uncasual and quite specific catalogue of their current ailments?

You want to be sympathetic, interested. Sometimes you even are interested.

But the thing is, you really just started out to exchange pleasantries, and you got drawn into something much more involved.

So, when I'm on the other side of this scenario, it's not easy to know how to respond.

I'm not talking about the cashier at CVS who asks how I am. She gets a conventional "Fine, how are you." These are actual friends that I just haven't been in contact with in the last month.

I can't really not mention that I've got cancer.

There isn't really a good way to work around to it gracefully, either. At least not that I've been able to figure out. -- " Oh well, you know how it is - the kids are busy, Judy's art is really going great, I've got cancer and we're thinking about getting a puppy in the spring."

Doesn't work. You've pretty much got to just lay it out there. And you have to do it early in the conversation.

Or in the e-mail message. That's a little easier.

Plus, I can refer them to the blog for the details.

Of course, now I'm trying to figure out who else doesn't know.

The opposite of a private person.

When I was admitted to the hospital, one month and two days ago, a lot of what I used to think of as my privacy and dignity were checked at the door. I think I must have lost the claim check.

I've never been an especially private person. I'm happiest in a large group of people, preferably standing at the microphone or lectern, on a stage or in a hearing room. If I spend too long by myself, I start to wonder whether I actually exist.

But I always maintained a fairly conventional sense of modesty and decorum about the usual things. I remember Doug Wilder telling the press that he wasn't ashamed of using the bathroom, but he still generally closed the door.

Eleven days in a hospital can go a long way to breaking that modesty down. Receiving visiting family, friends and coworkers from bed, having a stream of nurses (most of whose names you can't keep track of) in and out of your room at all hours of the day and night, reporting the precise quantities of everything you ingest and egest to those same nurses, and weeping in front of people you'd always thought might think you were fairly well composed, not to mention receiving suppositories - all these and similar things tend to make you a bit less fussy about personal privacy.

Notably, my decision to start and maintain this blog demonstrates a considerable tendency to openness about the most personal aspects of my life right now. Also, a completely bald head affords me an enhanced sense of public nakedness.

So I was a little surprised today when Dr. Rowles left the examining room twice this morning - once so I could take off my shirt and put on a gown, and again so I could take off the gown and put my shirt back on. This is the same guy who prescribed the suppositories.

I know it's the right protocol. I don't object - but it seems quaint to me.

Plus, I am a huge fan of Dr. Rowles. He was also the one who gave me morphine in the hospital, and he has CURED something - my infection. And he's a very engaging person - I can see that especially well now that I am not feverish, delirious and fearful of immediate impending death, as I was the first time we met.

He told me that my progress, from the infectious diseases perspective, is the best that we could have hoped for. My blood cultures are perfect. My blood counts are close enough to perfect. The mass (a combination of the hematoma and the tumor) has decreased a bit.

I'll complete the course of my two current antibiotics on Saturday, as planned, and start another, precautionary oral antibiotic along with chemo and radiation on Monday. It has some potential side effects. I won't describe them here - not because I mind, but because, well, I can still exercise some discretion out of sympathy for the reader.

Tonight, I'm going to engage in some attention therapy. My plan is to play the first set with the band at Rare Olde Times tonight. I hope we'll have a full house.

I promise to keep my clothes on.

Perspective

I've been thinking about how cancer could happen to me.

Then I have to think about all the worse things that happen to other people, like when kids get cancer. This is an easy list to make and I won't belabor it here.

I've got to acknowledge that my getting cancer is not even in the top million worst things to have happened in the history of the world.

But it's the worst thing that's ever happened to me.

I think it's probably the worst thing that has happened to my wife and kids, too.

Sometimes perspective is not especially helpful.

Today was a good day. I took my IV, spent some time with my strep infected child, then went into the office for a couple of hours.

At 1:00, I went to St. Mary's for a CT scan for my radiation oncologist to use in planning my radiation. Evidently my weight loss means they have to recalculate the radiation measurements.

Happily - no barium swallow for today's CT scan, just the IV contrast.

No medical appointments tomorrow. Thursday I see Dr. Rowles. Friday I go back to radiation therapy for a dry run.

Sometimes it's easier to look at the steps right in front of you than to look too hard for perspective.

It's still a good plan.

Fighting cancer is a time consuming business, even in the off weeks.

First thing this morning I took my IV, and then pulled out the huber needle from my port -a-cath. With the needle out, I was able to take a much anticipated shower. Ah, bliss!

Mid-morning I met with my radiation oncologist, Dr. Trivette, to discuss the radiation plan starting next week. He wants me to get a CT scan tomorrow, so he can do revised planning. I'll be interested to hear if they can see any progress on my hematomo or tumor or both.

On our way back from Dr. Trivette's office, Judy got a call from the school that one of the kids was sick, so we detoured over there for a pick-up. Judy called the pediatrician's office and was told to bring our sick child by at 2:00. We stopped at Rite-aid for cough drops and cough syrup, and then went home.

After lunch, a home health care nurse came by to replace my Huber needle. She also drew blood for my infectious diseases guy, Dr. Rowles.

As I was having my new needle inserted, Judy made the run out to the pediatrician. After the nurse left, I went over to IVNA to try to get a flu shot.

At IVNA, I was at least 25 years younger than every other patient there. Nevertheless, they took my word for it that I'm a cancer patient undergoing chemo without any supporting documentation. I was in and out in 15 minutes and $20.

Judy called me in the car and said I needed to advise my oncologist that "there is strep in the house." We have a great pediatrician, and she gave Judy antibiotics for all three kids, even though only one is sick (so far).

I had about an hour to kill between my flu shot and my 3:45 appointment with Dr. Evers, so I stopped in at Target to get a couple of hooded sweatshirts, to give me some head cover without wearing a hat indoors all the time. I'm trying to resolve the conflict between my manners programming and my cold head.

Dr. Evers told me my blood work looked great. We discussed the rescheduled plan, and it's a lot like the original plan.

• Next week, December 6-10, I'll do another course of chemo, just like the last one, but out-patient instead of in the hospital. I'll have a portable pump infusing 5FU around the clock. On Monday, I'll do a dose of Taxall at the Virginia Cancer Institute infusion center, and Monday through Friday, I'll have a dose of Cisplatin there.
• Also next week, I'll have a dose of radiation at St. Mary's every morning and afternoon/evening.
• On Monday through Friday of each of the next three weeks, I'll have one daily dose of radiation.
• Then on the week of January third, we'll repeat the chemo and double radiation cycle from next week, except that I'll only have four days of (double?) radiation.
• No sooner than January 31 (and quite possibly later, depending on my condition, recovery, blood counts, etc.) I'll have surgery to resect my esophagus.
• No sooner than 4 weeks after that I could start the first of two cycles of post-operative chemotherapy.

I expected to start dreading the next round of treatment this week. Instead, I'm impatient for it to start. I feel recovered from the last round, and I want to get it over with.

Tomorrow - just the CT scan. Maybe I'll get to the office in the morning. They haven't seen me bald there, yet, so maybe I can raise a ruckus.

Sabbath

Today, Sunday, was a quiet day.

We went to 11:00 mass. In the afternoon, Seamus and I watched Raiders of the Lost Ark while Judy took the girls to "All Fired Up", a place where you can paint ceramics, they'll fire them for you, and you pick them up in a few days.

Tomorrow will be busier. I have an appointment with my radiation oncologist at 10 and my oncologist at 3:30. Also, the needle access to my port-a-cath needs to be changed, so I'll have to meet one of the home health care nurses at home at some point. Not sure I'll make it to the office, but we'll see.

The last time it was changed, the nurse told me how I could remove the old needle myself. The plan, if I don't chicken out, is to take out the needle after my IV tomorrow morning so I can have a real shower, totally soaked. Then the nurse can put in a new one later in the day.

God, I want a good soaking.

I seem to have some hair growing in (at least for now). I have to decide whether to keep shaving my head, or just let it be for a while. The next round of chemo may well finish it off either way.

Say it ain't so.

Last night I dreamt I was visiting a sick friend.

I was trying to commiserate, empathize and console. I was trying to tell the friend that I'd recently got over a disease myself. I couldn't remember, though, what I'd had. I knew it began with a "C". I was thinking "conjunctivitis" or "compound meningitis" but I couldn't quite put my finger on what it had been.

I woke up, and remembered - esophageal cancer. Then I remembered I still have it.

It's a little surprising to me that I still have such strong denial in my subconscious.

Everybody's heard about the four stages of grieving, right? What are they? Isn't the first one denial? Then anger. Or is it bargaining? Acceptance is the last one, anyway.

Upon reflection, I've been entertaining these mini waking fantasies where one of my doctors calls me to admit, sheepishly, that they'd misread my scans, and that there is nothing wrong with me. I'm always magnanimous, assuring the embarrassed physician that I wouldn't dream of litigation.

Denial is easy, especially since I HAVE NO SYMPTOMS!!! The only things that have made me feel bad are medical treatments. My hematoma and fever were a result of a needle biopsy. The chemo makes me feel like hell. I got a rash from an antibiotic early on. My arm got distended from a slipped IV.

So we're still expecting to wake up and find it was all a bad dream.

There's no place like home. I'll miss you most of all, Scarecrow.

It's not that I want to experience the symptoms of esophageal cancer. They're horrible. They're also a harbinger of a much worse prognosis.

Sure, it's unlikely. I've had two endoscopies (one with ultrasound), a PET scan, at least four CT scans (that I can remember), and some X-rays. But it could happen, right? Maybe?

It could be time to start bargaining.

Mystery Train

Thanksgiving, done right, lasts at least two days, and ours has.

Yesterday, we went to Mass in the morning - my first bald appearance in public. We'd ordered dinner from Ukrops, so there was no real cooking to do, just warming-up. My parents, my sister and her family and my brother Dan and his wife all came for dinner. My other brother is in Dublin with his wife and sons.

Once you remove the burden of cooking, it really is much easier to have the party at your own home, than to travel to someone else's house, even just across town. You know where everything is. You don't have to worry about imposing if you want to slip upstairs for a nap. You pretty much have things your own way. Thanksgiving with my family has been great. We've also heard from so many good friends.

Today, I rode my stationary bike for ten minutes at a leisurely pace. We all went out to see The Polar Express, and I applied sunless tanning cream to my pate. This, plus the usual eating and antibiotic administration, made for a full day. I still find my energy level to be moderate at best and difficult to sustain.

I'm surprised at the sensitivity of my scalp to chills and drafts. I slept in a hat last night, and fully intend to do the same tonight.

I'm full of ambition for the coming week, my last before chemo round 2. I thought I'd feel more rising dread of the next round of chemo, but instead, I just want to get on with it. I suppose, there's plenty of time left for dread, but for now, my dominant mood is impatience. I want the cancer the hell out of my body, out of my life, and out of my damn way.

At the end of The Polar Express, the conductor tells the young protagonist that it doesn't matter where the train is going - what matters is deciding whether to board.

I think that misses it. We don't always get to choose the ride, just what we do while we're traveling.

Might as well enjoy the scenery and chat with my seat-mates. I can't drive the train, but I can make the most of the ride. Yes, I would like some refreshments from the club car. Thanks.

Big, bald, thankful guy

Today is our youngest's 6th birthday. Her paternal grandparents, her godmother (and family) and another family friend joined us for a celebration feast.

Everyday, somebody brings us dinner. Our great friend Patti Bragg has this organized, and it is a remarkable help to us to be relieved of the logistics of feeding the family every day. I'm not sure why it is such a huge help, but it is.

And we are eating way, way better than usual.

Our feeders tonight brought a baked ham with all the trimmings. There was enough food for 30 people, and even with Mairead's party, we were only 11.

So, it really was a feast.

I had another great day - a visit to the office, lunch with my work buddies, a couple morsels of legal analysis, errands run. I'm thinking of today and yesterday as warm-up sets for next week. I read somewhere that when you lift weights, you should start with a warm-up set, where you go through the motions of the exercise little or no weight, before you start pumping real iron. That's what today and yesterday were like for me. Next week, I hope to put a couple light plates on the bar and start to pump up.

Of course, the week after that is chemo again. And radiation.

Gotta take it one step at a time. Next week - objective is full activity or close to it.

After dinner, and cake and presents, I asked Mairead if we should cut my hair tonight or tomorrow. She was instantly enthusiastic for an immediate staging. I think that, like me, she sensed that the spectacle would be more intense with the crowd that had gathered for her birthday feast.

We set a chair on the front porch, directly under the porch light, tied a plastic apron around my neck, and fired up the clippers. Each of the kids (mine and another present) took a turn with the clippers and the two guard. Judy finished up and then everybody had a go with the one guard. Finally, Judy went over the whole thing with no guard at all.

Despite her earlier enthusiasm, Mairead cried at the final product, and even unflappable Callaghan seemed a bit startled. Seamus thinks its cool.

I'll probably scrape off the last bristly layer with my razor, but not tonight. I look really different, I think, but it doesn't bother me.

Here are the things I'm thankful for:

• Judy, Callaghan, Seamus & Mairead
• My parents
• My brothers and sister and their families
• Judy's family
• Our cousins, aunts, uncles and extended family members
• Our friends and neighbors
• My firm, LeClair Ryan
• My band, Uisce Beatha
• Our church, St. Paul's
• Our pub, Rare Olde Times
• Our home
• Our Northside neighborhood
• Our city, Richmond
• That Judy reads everything and encouraged me to have an endoscopy
• My doctors, nurses and the rest of my medical team
• That I ponied up for the cool eyeglasses last year even though they cost a lot more because without hair they are a much more prominent feature on my head.
• Hats
• Every day. Every single day. Every one. Especially today. Especially tomorrow.

It was a little rainy here today. Somebody said something about it being dreary.

All I could think was - since I'm in it, instead of looking at it through a hospital window, this weather seems great to me.

I'm afraid I might become an insufferable Pollyanna. Maybe it'll be more tolerable from a bald guy.

Happy Thanksgiving.

Gentleman Lawyer

Great day today.

Here are some normal things I did today:

• Parent teacher conference,
• Went into my office,
• Discussed a contract negotiation,
• Lunched with one of my partners,
• Picked the kids up from school on my own.

I played at being a "gentleman lawyer" today, arriving at my office at 11, leaving shortly after 2 with a break for lunch in between. Still, it was great just to be there. Tomorrow I hope to go a bit longer, maybe get through all my e-mail, mail and some paperwork.

After school we took the kids to Michael's to buy an artificial Christmas tree. The kids are great sports about the "fake" tree. I reminded them that we could put the tree up earlier and leave it up longer. Judy admonished them (and me) that we can't put it up until after Thanksgiving.

We'll see.

Judy also thinks there could not be a worse time to get a puppy. She's probably right. Definitely right.

Not sure my hair will make it to the weekend, so we might have to accelerate the buzz cut date.

Golden-haired cancer patient

I've been out of school for what, nearly 15 years now. I still get giddy when I score really well on a test. Even a blood test.

Maybe I should say, especially a blood test.

Anyway, my white blood cells are right smack dab in the middle of the normal range. My red blood cells are comfortably ABOVE the normal range (which is good). So no procryd today. No neupagin.

I talked briefly with Dr. Evers (my oncologist). He and Dr. Trivette (my radiation oncologist) are thinking I ought to be able to start radiation with my next round of chemo, starting around December 6.

Dr. Evers also cleared me to have a bit of Guinness from time to time and to exercise in moderation. Although I'm eating fine, I haven't really gained back much weight since I left the hospital, so I'm hoping some Guinness and exercise might do the trick.

Judy and I talked a little this morning about what happens if I die. Neither of us is really focussing on that scenario, but we'd both been thinking about it a little, so it was good to connect. Work the plan, but plan for every contingency. It wasn't as hard as I expected. Not much fun either, but it feels better to have the channel open between us.

I did a little legal work today. Reviewed some documents. Made some suggestions. I think I can do more, and I'm kind of sorry for the holiday this week, as I think I can do some ramping back up over the next few days.

I'm really feeling good. Aside from tiring easily, some residual ringing in my ears, an especially efficient digestive system and the nuisance of the port-a-cath access tube dangling from my chest, I'm quite well.

Judy and I went to Target late this morning and started Christmas shopping. Looks like we're going to go with an artificial tree this year for the first time. The kids are a little disappointed, but good soldiers.

Judy, too.

Me, too.

My clothes seem to be covered a light dusting of my hair. Looks like I won't dodge the bald bullet. I told the kids they could have at me with the clippers before it all fell out on its own, so it looks like we'll do that on Friday or Saturday. I think it'll last 'til then.

We've been thinking and talking about how this process is like a crucible, burning away the inessential, and tempering the essential.

Hair is inessential.

Cry, baby. Cry.

This morning, I drove my car, solo, for the first time since late October. I went to my office and met with some of my partners. Then I stopped for gas and went to World Market to pick up some beer for the work crew tomorrow and some wine and stuff for Thanksgiving. It is nearly, but not quite, as much fun to buy beer and wine when you don't expect to drink any of it. I spent most of the rest of the day recovering.

There's something hard about feeling better.

Naturally, I'm delighted with each day's improvement, but I'm impatient to be well, to be my old self, to do much, much, much more than I really can.

Also, I feel an urgency to try to get as better and do as much as fast as I can before the next round of chemo (likely with radiation this time) comes around to knock me flat again.

Still, I'm making the most of it, while trying not to press my luck.

Yesterday, I met with a client, made some business related phone calls and felt renewed. By eveningtime, when Ed came to take Seamus to his cub scout pack meeting, I was starting to fade, but wanted to go with them - so I did. I began to suspect that I'd pushed a little too far when I got choked up during the Pledge of Allegiance.

While I'm getting stronger physically, emotionally, I'm still on a hair trigger. It is striking that while I've still got some peripheral neuropathy (loss of sensation) in my skin, emotionally, I feel like all my nerves are bare and exposed to the sun and air.

Judy teases that we have a daily contest when the mail comes as to which card or letter is going to make me weep. It's not sadness or grief or bitterness. It's just emotion, completely untethered. Especially when people are being kind, supportive, generous, understanding or helpful.

Ed has organized another work detail for tomorrow morning. It was much simpler to graciously accept this over-the-top gift from our friends when I was in the hospital. I know I can't do the chores they're doing for me, but I feel much more of a slouch sitting on the porch watching than when I was confined to a hospital bed.

Also, I've got to do other stuff while they'll be here. They're supposed to arrive around 10, while I'll be doing my IV (or "shooting up" as my brother referred to it). Then at 11, I promised to go to mass with Judy & the kids.

Ultimately, I'm so pleased and grateful for the help. So much that I would have done falls on Judy, and this will take a load from us both.

I'll just try not to weep too much, and leave graciousness for another day.

What would you do if I sang out of tune?

Great things that happened today:

• Woke up early and well enough to have breakfast with the kids before school.
• Self-administered IV antibiotics without professional medical assistance.
• Two (2!!!) telephone conferences regarding substantive client legal matters.
• Took dictation from Mairead for her birthday wish list.
• Received a drawing of "A Turkey In A Tux" addressed, "To: Dad to make you laugh. From: Seamus."
• Sang two songs (one lead, one backing Dan) at Rare Olde Times tonight, and stayed to watch the whole first set.

I decided that I am more disruptive to the household when I'm upstairs out of the way, than when I'm in the middle of the action. Sometimes, I have to withdraw, but when I can, I'm going to stay in the mix.

After the kids left for school this morning, and Judy went out for a bit, I used the time alone in the house to see if I could sing at all. I can. It's not my full voice. I don't have the range or dynamics I'm used to, but I was able to croon out a couple of tunes, so I started thinking about a limited appearance at my band's 7th anniversary show at Rare Olde Times tonight. No commitment - just thinking about it.

When Judy came in, I showed her what I could do. She asked what I wanted to do tonight. I said that I might come to the pub, but I wouldn't if I didn't feel well enough when the time came. I said that if I came, I might sing a song, but only if I felt up to it. We agreed to leave the issue open until the very last minute.

While she was out Judy had bought gyros. Somehow, yesterday, I decided I wanted one. It tasted great today, but I'm not looking for another one soon.

After the gyros, Judy and I walked about a block and a half from the house and then back. I self-administered my IV antibiotic, then called into a conference call on a CLIENT BUSINESS MATTER. This routine call, was, for me today, bliss. To function, even for a short time, as a capable lawyer was tonic to me, after three weeks of being a full time patient. I'm hopeful that I'll be able to do more over the coming days.

The only problem is, I still get tired pretty quickly, and still spend a good portion of the day just resting. I know this is important. I tell my self that I'm actively healing when I rest, but it is hard. I miss my life. I just miss it.

As has been the case every day since I went in the hospital, one of our generous, blessed friends delivered dinner to the house for us. We marvel at the goodness of people. We are sanctified. We are humbled.

After dinner, Judy drove us out to Rare Olde Times. This was my first visit to the pub since October 21. I was still not committed to staying, or to singing, but I had spoken to Dan earlier in the day and asked him to set up a mic for me, just in case.

The set started with Ed singing a Pink Floyd request. It was great to be on the stage with Judy, Dan, Ed and Martin, but I did not sing or play on the first song. The second song was Dan - Green and Red of Mayo. On the last line of the first verse I usually come in vocally to back him up - I think it's one of our best brother harmonies. I wasn't sure I could hit the note on pitch or that I could sustain the usual harmony, but I made the attempt.

I think I heard somebody cheer when I came in. That provided helpful cover, because I didn't nail it, and there was a little emotional quaver I was struggling to control. But I got close enough. I sang with Dan and the band on the rest of the song, and did serviceable work on my part.

I think that meant more to me than the next song, Star of the County Down, on which I sang lead and played guitar, but I was overjoyed to be with the band. At the end of the song, I thanked everyone for seven great years at Rare Olde Times, and slipped off-stage to enjoy the rest of the set from a booth, sipping water with lemon. It was great. It was great.

After the first set, Kathy Tatum took my back home, so Judy could play the second set.

We get by with a lot of help from our friends.

Hump Day

It's Wednesday, right? It's harder and somehow more important to keep track of these things when you are convalescing.

Convalescing has a nice ring to it, like I've gone to a seaside spa to sip springwater and sit wrapped in blankets on a lounge chair on a beach while inspirational music plays in the background. In the movies, you usually get to fast forward through the convalescence.

I was probably trying to fast forward a little too hard today. This morning was great. I woke feeling well, had a hearty breakfast, bathed (sort of) and dressed. I had to change my pants from a pair that had fit well because even with a belt, there was no way they'd stay on.

Judy drove us in my convertible to pick Callaghan up from school in the morning to take her to an American Youth Harp Ensemble Concert at the Tuckahoe Women's Club. I was feeling good, and wanted to get out for a bit and see the concert.

The concert was great, but I spent too long sitting in a folding chair, and was pretty uncomfortable by the end of the show. Still, I was delighted to be there. I walked a block or two outside the club while waiting for Judy and Callie after, and felt a little better, and proud of my physical walking prowess. I made a concerted effort not to shuffle.

This afternoon another home health care nurse, Jane, came by to watch me go through the IV process on my own. I think I've actually got it down pretty well, and Jane assured me that it would take a lot of bubble to do me any serious harm. I think I can do this on my own, and will fly solo tomorrow.

I took another walk, this time with Mairead, up to the corner of our block and back. Again, I was delighted. Though I didn't really need it, I brought along my Irish blackthorn walking stick, kind of the same way I carry two Darvocet in my pocket with no intention of using them. Mairead asked some indirect questions about the stick, complimented its color. Finally, she said directly, you don't usually need a stick to walk. I told her I didn't need it now, but had it just in case.

Later in the afternoon, Judy took Callie to harp and Mairead to piano. Seamus stayed home with me to get his homework done. Sometime around 5:30 or 6 my lower back, hip and legs started to ache. I have two theories, first, that I just overdid it today with the folding chair and the walking and second, that the forecast "bone pain" from the blood cell boosting medicine has begun. I'm hoping it's the former, but I'm dubious. This feels like bone pain.

Seamus asked me tonight whether we would play music as a family for the Christmas Eve Mass at our church this year. We've done this before and had been planning to do it again this year. I told him we would try to, that we would try to get some help so that the family can play without depending on me to be well enough to play. Seamus cried. It's the damn disappointments and interruptions.

Slight fever tonight for the first time in a while.

Reclaiming self

It has been twenty-three and one quarter hours since I took any prescription pain reliever. I did break down and have a couple of tylenol half an hour ago, but I think, for the time being, the big pain is past. Mostly now what bugs me is discomfort. The constant mediciney taste in my mouth. The niggling sensation of the port-a-cath tube on my chest. Also, I've got some congestion in my head, ringing in my ears and my skin doesn't seem to be transmitting sensation with its accustomed efficiency (I think this is called peripheral neuropathy).

Still, all in all I'm much happier and better. The highpoint of my day was calling into a law firm board meeting, and getting a couple of work related messages - nothing high pressure, just enough to let me know I'm missed. I'm determined to do some work (even 1/10th of an hour) by weeks end.

Brian, my home health care professional came by this afternoon to install a new access tube to my port and to teach me how to administer my own IV antibiotics. I'm enthusiastic about doing this myself, but wasn't ready to fly solo after one demonstration, so he's coming back tomorrow to walk me through it again.

Brian says all I have to remember is "SASH", or Saline, Application, Saline, Heparin. This means I flush my port with a syringe of saline, then hook up the antibiotics for 30 minutes, then flush it with saline again and then flush it with heparin. I also have to mix up the medicine, hang the bag, and make sure the bubble doesn't go in the tube ("NEVER let the bubble in the tube") (What is THAT about? Why IS THE BUBBLE THERE IF IT CAN'T GO IN THE TUBE???!!!!). I also have to wipe the tip with alcohol in case it has ever touched anything, and I have to break some tips off but make sure other tips stay on. I wish I'd taken at least one science lab in college. Milton is a comfort but damn little practical help to me now.

It's ok. A couple more days and I'll get it for sure.

OK, the real highpoint of my day was sitting down to dinner with my family in my home and listening to Seamus and Judy play violin and piano together after dinner.

Thanks to all our friends and family who continue to shower us in unreasonably generous love and support. May God bless you as you are a blessing to us.

Home. Home. Home.

Last night I declined the sedative because I wanted to be awake when they unhooked the last chemo bag, a little after midnight. I'm not sure whether the immediate relief was more psychological or physiological, but I felt released.

This was especially good since the hours leading up to to completion of the last bag of 5 FU were punctuated by increased pain, increased anxiety, and a late night ekg. For the record, I have the heart of a horse and no grounds for fear on that count.

This morning was brighter still. My blood counts were good. My temp, blood pressure solid. My weight was ok, and through the intercession of some good friends, I got an early spot on the CT scan queue.

Our optimism flagged a little when it started to look like I'd need to stay in the hospital until 6 pm to be administered a dose of IV antibiotics, but blessed Dr. Rowles said I could take them at noon. With Dan's help clearing out the room, we got out at around 1 pm.

Judy drove me to Dr. Evers' office at the Virginia Cancer Institute so we could talk with him about the CT scan, and get some drugs to boost my white and red blood cell production.

Dr. Evers had two pieces of good news. The first is that the mass had decreased measurably. The second was that his kids have become Uisce Beatha fans from listening to the CD we gave him. He says his 10 year old is particularly taken with "Drunken Sailor." I'm so proud.

The other good news, I guess, is that the course of chemo I just completed is likely to be as bad as it gets. It was no fun, but I've done it once so I can do it again. Fortunately, it will likely be three weeks before we have another go at it. We'll also look at adding radiation the next time around.

Tomorrow, the home health care people will come hook me up with some IV antibiotics through my port-a-cath, but for now I have no tubes, adhesives or needles sticking out of me. I just had a long shower, and am in clothes that don't smell like the hospital. I'm looking forward to sleeping in my own bed.

Home.

Chemo - Day 5

Well, it looks like I'll have to come up with some new post titles as my first round of chemotherapy is finishing up. I'm on the tail end of my last 24 hour dose of 5 FU.

Today was a good day. I sponged myself off, shaved and changed into some clean loungewear. Around 10:30 am, my IV tower and I made our way down to the chapel for 11:00 mass. I was a little fearful of a solo trip, but all went well.

I can't seem to sing at all or to speak very well. I don't know whether it is the chemo or some other drug, or if it is, as I suspect, the pressure of my hematoma on my trachea. Dr. Rowles is optimistic that the effect will likely be temporary, but that I may need some retraining. That could take a lot of Guinness.

I ate part of my lunch, and dinner is already here, somewhat accusatory. I've got cans of unopened Boost stacked up around the room and more comes with every meal. I wonder what that's costing me?

Here's the plan for tomorrow:

1. CT scan - early, to see what's up.
2. Boost of antibiotics to get me through to Tuesday.
3. Meet with Dr. Evers at hospital so he can read CT scan and write me walking papers.
4. Get the hell out of the hospital.
5. Swing by Dr. Evers' office at the Virginia Cancer Institute to get a groovy shot of some drug that is supposed to boost my white blood cell count for 10 days and which, for reasons not at all clear to me, cannot be administered in the hospital because it is only available on an oupatient, not an inpatient basis.
6. Go home.

It's a good plan. I'm growing attached to it. I'm incautiously optimistic.

Had some excitement this afternoon when I dislodged my IV while brushing my teeth. The IV slipped out of the vein, but not out of my arm, and started dispensing fluids into my arm tissue, distending the site. I pushed the nurse alarm button on my bed and my mother ran down to the nurses station to get help. Mom and I were both disappointed that alarms didn't start flashing, klaxons whooping and scads of medical personnel shouting "stat" and other dramatic medical terms didn't appear. Instead, my duty nurse calmly strolled into the room, removed the dislodged IV, gave me a warm wet washcloth for my arm and called the IV team. After a while the IV nurse came and put a new IV in my other arm with a minimum of fuss, and all was well.

More visitors this afternoon. Some repeats, some new. Delighted to see all.

Also, I'm embarassed by the generosity of the noble friends who were at my house today doing my winterizing chores (better than I'd have done myself) while I lolligaged around the hospital watching TV and receiving visitors. You guys are angels. I love you forever.

Chemo - Day 4

Mmmm. Spaghetti!

It took me a few hours today to muster the will to try my lunch, but once I did, it was kind of good. At least, it was ok and I could eat it without feeling nauseated.

That's probably a pretty good metaphor for a lot of what I'm going through - the anticipation is worse than the actual event.

Like coming off the morphine. I was terrified. It hurt to think about the morphine going away, but between the darvocet and the apparent improvement in the hematoma, it's not bad at all.

This morning, Judy and I took a walk. We went around the ward to the elevators, then down to the lobby. We walked to the chapel and sat there a while. A couple of volunteers came in and offered us Communion, which we were glad to receive. The Eucharist has become an extremely emotional experience for me these past few weeks.

After the chapel, we walked over to the cafeteria. I had half of a Coke (REAL Coke, not my habitual Diet Coke). We chatted a bit and then returned to the sixth floor.

Lots of visitors this afternoon with wisdom, warm wishes, funny stories, songs, gifts and support. Thanks.

Tonight I get my last two hour dose of cisplatin and my last 24 hour dose of 5FU. Assuming all continues to go well, my temperature stays normal and we have no surprises, I should be able to go home on Monday. I'll need to go by Dr. Evers' office for some medicine to boost my white blood cells. I'll also get visits from a home health care nurse who'll administer some an IV antibiotic. I'll also have an oral antibiotic.

Once I'm done with this round of chemo, I'll have three weeks off to let it percolate and to gear up for the next round. I think I may be able to get radiation during the next round, as well.

I'm curious to know how I'll feel during the 3 weeks off. I know I'd be happiest if I could get back to work for a while. At a minimum, I ought to be able to do some work from home, I hope. I hate not working. Hate it. Hate it. Hate it.

Can't wait to get out of here.

Chemo - Day 3

Good News:

• I seem to be tolerating the chemo reasonably well. The hiccups have dissipated and, while I have some appetite issues, I'm generally doing ok.
• My infection seems well under control. I haven't had any fever in a few days.
• If all goes well, I should complete this first course of chemo late Sunday night, and could go home on Monday or possibly Tuesday. My infectious diseases specialist, Dr. Rowles, and the staff social worker here seem to have reached an agreement with CIGNA for me to receive IV antibiotics at home.
• I was able to eat some meatloaf, mashed potatoes, roll, banana and brownie for dinner tonight. Way better than lunch where I ate one quarter of a french fry. Boost is helping, too.

I had a few very welcome visitors today. I know I'm not very entertaining to visit, but the company means a great deal to me, even if I tend to doze off during visits.

We're trying to work me off the morphine in anticipation of my going home. This is a scary process because it opens the door to PAIN. Pain is fearful. It makes you want to curl-up in a ball and not move. It distracts you from everything else.

Sometimes, the fearfulness is worse than the pain. Sometimes it is easier to push through the pain than to try to avoid it.

In any event, the new mix of darvocet (sp?) and much less morphine seems to be working for now.

Chemo - Day 2

One of the good things about doing chemo inpatient is that I can sleep through a lot of it, and today I did.

The hiccups seem to have played out, but I'm groggy all the time. Also, people keep telling me to eat. I don't really want to. It's not the quality of the food - I'm just not hungry. The boost drink is pretty good, though.

I have to rinse my mouth with saline after every meal, and I have to measure and record my urine. Small enough things in themselves, but tedious after awhile.

I continue to be moved by the generous expressions of love and support from our friends, neighbors, collegues and acquaintances.

Enough for now. Good night and God bless you.

- Jim

Chemo - Day 1

My fever seems to have backed off, for now at least. And we are concentrating fully on the chemo.

I had some signifcant trepidation about the Traxal, a powerful chemo drug with some rare but lethal side effects. That was my first treatment last night for three hours. It was preceeded, though, by a variety of other drugs to prevent or mitigate the Traxal side effects. Everything seemed to work right, and we got through the Traxal fine. No more Traxal this week.

After the Traxal, I had a couple more hours of hydration, and then two hours of Cisplatin. I also got a wicked case of hiccups. Actually, fairly benign in the scope of adverse drug reactions, though no fun after a while. Medication seems to help this somewhat, though not entirely. I'll get two more hours of Cisplatin each of the next 4 days.

After the Cisplatin, I started on the famously named 5 FU, which will run continuously, except while I'm receiving Cisplatin, for the next 4 days.

To free up the portacath for my chemo, I've acquired an IV in my left arm to afford access for the antibiotics, morphine and other assorted potions and treatments.

Dr. Rowles, my infectious diseseases specialist, is working on a plan to send me home with a once a day intravenous anti-biotic, in case I am otherwise ready to be released at the conclusion of this round of chemo. That is a very happy prospect that I'm almost ready to start pinning my hopes on. But not quite yet. Maybe tomorrow. Or Friday, I'll start to hope for a Monday release.

Back in training today, I took four laps around the oncology ward, pushing my own IV tower, and accompanied only by my mommy and daddy. Tomorrow I hope to receive permission to leave the ward and create a ruckus elsewhere in the hospital. Also, Ed has agreed to restring the guitar in my office and bring it to me hear so I can bellow out some rebel songs.

I am so grateful for the cards, masses, messages, comments, calls, visits, prayers, gifts, friendship and love of so many wonderful people. God bless you all as God has blessed me with you.

Slainte!!!

Ready, set, GO!!!

And we're off -

CT scan this morning shows significant shrinkage in the hematoma. CHECK!
Temperature is down to low grade or normal. CHECK!
Feeling good, optimistic, ready. CHECK!

Judy and I met with Dr. Evers this morning. His proposal is to start a week of chemo today, but to forego radiation until we have a clearer resolution of the hematoma and infection. I'll stay in the hospital through the five days of chemo.

I'll take three chemo drugs:

1. Taxal. I'll get one dose of this over the course of three hours, today.
2. Cisplatin. I'll get one dose for one hour for each of the next 5 days.
3. 5-FU. I'll get this continuously for 5 days.

These can have some pretty nasty side effects, but the team assures me they have pretty effective counter-measures in the arsenal.

I'm ready. Let's go.

Three steps forward and two steps back is still a net gain of one.

I had this stupid idea yesterday: Maybe if I stopped taking morphine, I'd discover that the hematoma no longer hurt, and was therefore ok!!!

I asked one of the doctors to cut out the regular drip and said I could just punch the button as I needed it. Then, I tried to see how long I could go.

Quite a long time as it turns out, from about 6 pm to about 6 am. The big problem is that the pain kicked back in hard and fast when it did, and I couldn't punch the button fast enough. Also, I didn't sleep much last night.

I think I was trying to prepare to go home - not that any doctor had said anything. I just wanted to, so I was getting ready.

My fever was down last night, but I had a spike of 102 this morning and 103 this afternoon.

Tomorrow, I'll have a CT scan early in the morning. Possibly an endoscopic ultrasound as well. Dr. Evers will be back tomorrow, and is bullish about starting chemo, even if we have to delay the radiation until the infection is more cleared up.

Judy, the kids, Mom, Dad, Dan & Amy came out to celebrate my fortieth birthday. Plenty of hats, dvds, cds, garments. Also a juicer/blender from Mom & Dad. A couple of my law partners stopped by, as did some other friends this afternoon.

People are good.

Stay Alert. Make Good Choices.

If you've read Ed's comment on my last post, then you may already know that scant moments after I finished my last post, Dr. Evers called the house with an exciting plot twist.

It appeared that one of my affected lymphnodes had tripled in size between the PET SCAN on Monday and the CT scan on Thursday. This dramatic development, along with my persistent high fever (since Sunday night) and a new pain in my chest, led to my being admitted into St. Mary's Hospital Thursday evening.

I saw Dr's Evers, Kumar, Bowles, Cohn and a few more. I had a series of chest x-rays while I swallowed barium and other nasty fluids.

The worst fear was an absessed lymphnode that would require immediate thoracic surgery. In the actual event, it looks like a hematoma ("bruise"), likely an infected one. This, it turns out, was among the better possible scenarios. Treatment plan is hospitalization with powerful IV anti-biotics and morphine for pain. Treatment duration is uncertain, but the fever was a lot less bad (i.e. somewhat better) last night.

While it now seems likely that we'll resume the initial chemo/radiation/surgery plan, it seems unlikely that it will begin tomorrow, or indeed until the infection is resolved.

For now, I'm hoping I might get to go home tomorrow (remember, my fortieth birthday?), but Dr. Evers isn't back until Tuesday. We'll see.

To hell or Connaght!!!

I told Judy I wanted to name the tumor, but I couldn't think of anyone hateful enough to name it after.

"What about Oliver Cromwell?"

Perfect. The affected lymphnodes can be the "Roundheads".

Admittedly, this may only make sense to my Irish friends, but we're going with it - Cromwell and the Roundheads.

Last night was rough. Not much sleep. High fever. Chest pain, and a rash this morning. Turns out the sneaky bastard Cromwell, having been discovered by our advanced intelligence network, is now making a move, and I'm experiencing spasms in my esophagus. Let me tell you, lying half awake with a high fever speculating about the cause of your chest pain is an experience purely to be missed.

The rash was a reaction to yesterday's antibiotic. New one today.

Good News:

• Dr. Evers' nurse, Susan, saw me first thing this morning and was able to give me some medicine to control the pain.
• Today's CT scan was the easiest test so far. Hardest part was waiting in the hallway with my fever. Test itself was in and out in 10 minutes.
• Had a decent nap, too.
• No more medical appointments until Monday morning.

Still, doesn't look like I'll feel up to going out to the pub tonight, but I remain optimistic about my birthday.

The made for TV movie of my courageous battle with cancer

Judy asked one of the oncology nurses if it would be too incredible in a made for TV movie if the protagonist started chemo and radiation on his fortieth birthday. It does seem just a little bit too pat, but that's the new plan.

Today, we met with Dr. Evers again to refine the plan, and our understanding of it.

I've got some kind of an unrelated infection or virus (flu, maybe?) and my fever is vacillating between 99 and 103. We're going to try a few days on antibiotics to knock this out. I had been of two minds about waiting. On the one hand, I do want to be able to muster my full powers to withstand the chemo and radiation. On the other hand, I already feel like hell, and concurrent sentences are generally preferable to consecutive ones. Dr. Evers resolved my ambivalence in favor of waiting until Monday.

This actually helps with the coordination of the radiation and chemo, anyway.

We met with Dr. George Trivette, the radiation oncologist, for the first time this afternoon. Like our other doctors, he strikes as as tops in his field.

Here's the plan

• Week 1 - Radiation 2x daily plus three types of chemo daily.
• Weeks 2-4 Radiation daily
• Week 5 repeat week one.
• Then some time to let the chemo and radiation steep, and me to recover.
• Then, maybe late January or early February (or possibly later) I get my esophagas removed.

Looks like a winner.

Here's some additional good news. The pet scan show no additional cancer.

Tomorrow I get yet another cat scan. Then off on Friday and Saturday. Sunday I take some massive steroids (to get "pumped up" for the chemo, I guess).

The REALLY good news: Dr. Evers says that if I feel like it, I can occasionally have a half pint of Guinness during my treatment!!!!! Sociaaaal!!!!

If I feel up to it at the end of day one, we'll go to Rare Olde Times to celebrate my fortieth birthday. While not an Irish castle, it's one of my favorite places in the world. Stop by if you feel like it.

PS: Here's the casting we're thinking of:

• Me - Liam Neeson
• Judy - Gwenyth Paltrow
• My dad - Sean Connery
• My brother Dan - Gabriel Beirne
• My brother Tim - hmmm, we still have some work to do on this.

But we're definitely committed to the Liam Neeson/Gwenyth Paltrow thing.

Have a plan. Work the plan.

More good news. Despite my having a fever (102 the night before, 100 at go time) Dr. George Parker agreed to proceed with installing my port-a-cath anyway. The reason this is good news, is that working the plan is our lodestone, now, and a delay in the plan this early in the process was an extremely disappointing prospect.

Dr. Parker is great. Reassuring demeanor. Stellar credentials. Nice guy.

He told me an interesting story. Evidently, he'd been at a Halloween cocktail party over the weekend, and somebody (without knowing he would be treating me) started talking to Dr. Parker about ME. Dr. Parker, in compliance with his professional ethical and legal obligations, did not disclose the relationship, but assured his fellow party-goer that "we're able to do some amazing things now."

I thanked him, and asked him to feel free to talk about me to whomever he wishes, identifying me by name, and disclosing any medical details he wants to. There are two reasons for this. First, if Judy had not read an article about Barretts esophagas, I'd be blithely going about my life now while the cancer grew in secret. We want to spread the word.

Second, and this is a little weird, I just need people to know and to talk about this. When Dr. Kumar first told us about the cancer, I felt like I was vanishing. Remember the picture Michael J. Fox carried around in Back to the Future, in which he and his family started to fade away, to have never existed? That's what it felt like to me.

Then, I started to receive calls and e-mails and visits from so many wonderful friends, neighbors, colleagues even acquaintances. This and my faith will be my power source to fight this fight. Another dumb movie reference - in Peter Pan, when Tinkerbell dies, Peter starts to chant "I do believe in fairies. I do! I do!" Then all the other kids join in, and Tink is restored to health. That's what the support I'm getting feels like to me. If enough people believe in me, than I can, too.

That's one of the reasons I'm doing this BLOG. I want people to know what we're doing, and to help with the campaign, but I don't want to overwhelm anybody. I've obviously already demonstrated a propensity for the maudlin in the first three posts (though I think that will subside a bit as I get down to business) and I don't want anybody to be ambushed by an e-mail message.

It doesn't hurt to have phenomenal doctors and some more pragmatic help as well.

Our friend Patti Bragg has volunteered to coordinate dinners for us. Ed Tatum will coordinate other chores and volunteers. John Pirko will manage professional, legal matters.

Today I vote, then go get a PT scan. Tomorrow I meet with Dr. Evers again at 9:30 and with Dr. Trevitt (sp?) for the first time at 10:30. Don't know exactly when radiation and chemo start, but likely it will be this week.

Work the Plan. Keep the Faith.

Do what needs to be done.

"It's amazing what passes for good news," Judy said, after Dr. Evers told us that the CT scan didn't show any MORE cancer.

So we're dealing with one tumor & two lymph nodes.

Here's the team:

• Me, the patient. I'm otherwise healthy, relatively young. I'm aggressive and determined, and I know I can endure a lot. One note, I'm not Bolan Collier, I'm Jim Guy. I started out to do this anonymously, but I've changed my mind. No secrets. No sugar coating.
• Judy, my wife, partner, chief supporter. She is the best.
• Dr. Joseph Evers, my oncologist. I've got a good feeling that he is the right man for this job.
• Dr. Kumar was the endoscopy doctor who first found the cancer. His partner Dr. Haverty "staged" it. These guys were very kind to Judy and me.
• I'll introduce the other doctors as I meet them.
• Most important, I have a huge support system of family and friends. Lots of people have offered to help, and we're going to impose on all of them.

Here's the plan:

• Radiation - twice a day for three weeks (excluding the weekends).
• Chemo - three kinds
• Surgery - after the radiation and chemo, they'll cut out the cancerous part of my esophagas.

Tonight, I'm optimistic and determined. I've been gearing up. A trip to Target for:

• Lounging pants (no metal closures) - 2 pair
• Flannel shirt - 1
• Magazines - 4
• DVDs - 2
• Personal cd player and carrying case - 1 each
• Book - 1 (George Washington biography)
• Notebooks - 2 small, 1 large

Then I went to my office. I want to set up as complete a home office as I can so I can maintain as much of my practice as possible. From my office I got a printer, docking station and wireless keyboard and mouse for my laptop, my two favorite volumes of the Virginia Code, my phone list, file list, my blackthorn walking stick and some general supplies.

I'm going to approach this like a major regulatory proceeding, transaction or legislative initiative. And I'm going to win.

Everything is different now.

Next week, I'll turn 40.

I am a successful partner in a great law firm. I have a wonderful wife and three amazing kids. I'm in a band with a steady weekly gig, and a loyal, local following - we just released our first CD.
I live in a very cool 95 year old house in a great historic neighborhood. I belong to a wonderful church in the neighborhood. I get along great with my family. I get along great with my wife's family. My life is as good as it gets.

Except for one thing -

Yesterday, I learned I have esophogeal cancer.

My wife reminds me that we're not ancient Greeks, and that we don't believe that there are petty gods who get jealous and smite you, just because things are going well for you, but man, it's easy to see the appeal of that idea from where I am.

I don't really know how things are going to go. We'll meet with the oncologist tomorrow and get more of an idea. I'm scared as hell.

Here are some of the things I'm scared of:

1. That I'll die.
2. That the law practice I've cultivated for the last 14 years will evaporate, and even if I don't die, I'll lose my livelihood.
3. That my disease or death will completely disrupt my kids' lives, screwing them up and keeping me from protecting and guiding them.
4. That I won't be brave enough to help my wife through this.
5. That I'll die after a protracted illness that will leave my family impoverished.

There's plenty more, but those are the top five.

There are lots people praying for me. That means a lot. If you read this, maybe you could say a prayer for me to. And for my wife and kids. Especially for them.