Tuesday, January 03, 2006

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.

Thursday, October 27, 2005

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.

Friday, September 30, 2005

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.

Wednesday, September 28, 2005

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.

Tuesday, September 20, 2005

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.

Tuesday, August 23, 2005

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.

Monday, August 15, 2005

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.

Wednesday, August 10, 2005

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.

Wednesday, August 03, 2005

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!

Tuesday, July 19, 2005

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.

Monday, July 18, 2005

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.

Monday, July 11, 2005

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.

Tuesday, June 28, 2005

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.

Monday, June 27, 2005

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.

Wednesday, June 22, 2005

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.

Friday, June 10, 2005

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.

Monday, June 06, 2005

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!!

Tuesday, May 31, 2005

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.

Wednesday, May 25, 2005

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.

Friday, May 20, 2005

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.

Monday, May 16, 2005

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.

Friday, May 13, 2005

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.

Wednesday, May 11, 2005

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.

Monday, May 09, 2005

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.

Saturday, May 07, 2005

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.

Thursday, May 05, 2005

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.

Tuesday, May 03, 2005

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.

Sunday, May 01, 2005

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.

Friday, April 29, 2005

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

Thursday, April 28, 2005

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?

Tuesday, April 26, 2005

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.

Monday, April 25, 2005

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.

Saturday, April 23, 2005

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

Wednesday, April 20, 2005

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."

Tuesday, April 19, 2005

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.

Saturday, April 16, 2005

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.

Thursday, April 14, 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.

Wednesday, April 13, 2005

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.

Tuesday, April 12, 2005

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.

Monday, April 11, 2005

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.

Sunday, April 10, 2005

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.

Saturday, April 09, 2005

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.

Friday, April 08, 2005

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.

Thursday, April 07, 2005

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

Wednesday, April 06, 2005

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

Tuesday, April 05, 2005

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.

Monday, April 04, 2005

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

Sunday, April 03, 2005

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.

Monday, March 28, 2005

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.

Wednesday, March 23, 2005

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.

Sunday, March 20, 2005

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.

Monday, March 14, 2005

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!

Thursday, March 10, 2005

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.

Wednesday, March 09, 2005

Stealth Blogging

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

Saturday, March 05, 2005

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.

Thursday, March 03, 2005

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.

Tuesday, March 01, 2005

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.

Monday, February 28, 2005

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.

Saturday, February 26, 2005

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.

Thursday, February 24, 2005

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.

Wednesday, February 23, 2005

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.

Tuesday, February 22, 2005

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.

Monday, February 21, 2005

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

Thursday, February 17, 2005

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.

Monday, February 14, 2005

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.

Thursday, February 10, 2005

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.

Tuesday, February 08, 2005

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.