Troop reduction, a double-edged sword

Initially,given that today marks the beginning of the Olympic games, I thought that I would be able to cleverly integrate various Olympian themes into this post -- the thrill of victory, the agony of defeat sorts of things. But, while walking earlier this morning, the olympic muse failed me, and I returned again to war metaphors to describe where I'm at regarding my cancer and its treatment.

This past Tuesday I had a CT scan and lab work done. I saw my doctor on Wednesday, and once again the results showed that I'm holding my own. The scan showed that the disease continues to be stable. No new tumors have appeared, and existing tumors have not grown. My CA19-9 levels remain low, and other lab work shows that my liver and kidney functions are normal. The chronic anemia -- low red cell and hemoglobin counts -- is still there, but other blood work is within normal ranges.

The image, then, that came to mind while walking was one of cellular and chemical trench warfare going on inside of me with new cancer cell growth being constantly countered by surges in my army of chemical agents. Unfortunately, as in all wars, there has been a good deal of collateral damage as well as friendly fire incidents. It's become clear that some of the post-treatment symptoms I have been experiencing, in particular the increasing edema, tendonitis and muscle fatigue in arms and legs, are clearly due to the toxic effects of the gemcitabine that I have been receiving three weeks out of four. It has gotten to the point where symptoms have not been completely relieved even during my rest weeks, and the effects have been accumulating. As a result, there will be a troop reduction of sorts in my battle plan. Beginning with this latest cycle (Wednesday was C9D1 for those keeping track), I will be receiving treatments every other week rather than three out of four. Essentially, it cuts out the gemcitabine-only treatment on day 8 of each cycle. On days 1 and 15, I will continue to receive the same doses of gemcitabine and avastin as in the past.

Hopefully, this reduced dosing will provide the additional time needed to recover from the side effects while continuing to keep the cancer cells in check. This change does not come without some concern that it might give the cancer just a bit of an edge in our ongoing battle, but as I've learned from the start of this process, what happens inside of me is really something I can't control. I will continue to do all I can to supplement the chemotherapy with diet, exercise -- and I'm hoping to be able to get back to biking and running if the toxic side effects are reduced -- alternative therapies, and hope and prayer. Yep, back to attitude as the only thing I can really control through all of this. And, while the emotional roller-coaster ride continues, it's much tamer these days -- more of a kiddie ride without the screamer drops I've dealt with in the past. I feel pretty good most days and am trying, as a new wrist band reminds me, to make every day matter. The uncertainty about what lies ahead provides an ever present and strong undercurrent that impels me to do so.

So, I continue to spend time with family and friends, sharing laughter, meals, walks, what passes for wisdom, and more. Last week, Jane and I had the opportunity to get away to Maui for some welcome R and R. We enjoyed the time together whether walking a beach, playing tourist, eating ono-burgers, birding (12 new species including some native Hawaiian honeycreepers), watching sunsets, or simply sitting and reading (mysteries for me, romances for her). I had a chance to snorkel at Molokini -- thanks for that go to Meghan Ritchie, unofficial travel advisor and concierge -- and even body-surfed some shore break with a bunch of kids and felt a bit like a kid again myself. My repeated thanks to John and Lorraine Ritchie for the use of their house on the slopes of Haleakala and for the continued support of so many others. The prayers, good wishes, reminders of times and events long past, and more are all contributing to my feeling of "wellness." God bless.

Peace,

Don

No news . . .

This past Wednesday, I completed my eighth cycle of chemotherapy and little seems to have changed. My last CA19-9 level, taken two weeks earlier, was still low -- 19, up an insignificant amount from the all-time low of 16. I continue to deal with and manage the side effects of the therapy, and the most significant continue to be fatigue and related symptoms; occasional elevated blood pressure has also caused some concern. Everything else is somewhat "normal," and it's likely that my disease continues to be stable. I'll know more in two weeks after another CT scan and an appointment with my doctor. Until then . . .

Peace,

Don

C8D1, an update

This past Wednesday's chemo, the first of my eighth cycle, went as expected. No need to review the details again. I did meet with one of my doctors prior to the infusion session, and we talked about the possibility of eventually reducing my chemo schedule to every other week from the current three weeks out of four. Given the fact that my CA19-9 levels continue to remain low -- 16 from blood drawn two weeks ago (down from 22 two weeks prior to that) -- it sounds promising. He does want to wait until we have the results of another CT scan, so cycle eight will be just like the others, three weeks of weekly infusions followed by a rest week. My next scan is scheduled for August 5, the day before cycle nine will begin. We'll also have the results of two more CA19-9 measures by then.

Going to an every other week schedule would hopefully offer some relief from the accumulating effects of the treatments. During my rest weeks, I no longer fully recover from the side effects and go into the next cycle with lingering fatigue and muscle weakness/tendonitis in arms and legs; increasing blood pressure was a bit of a problem during the last week or so, but an adjustment in my meds for that seems to have it under control. I don't want to make it seem that I'm becoming an invalid though. While side effects have made it difficult to ride my bike and run, I'm still doing well. Other than the fact that I'm chronically anemic (low red cells, hemoglobin), my other blood counts (white cells, platelets) are good. My liver and kidney functions are good. I try to get in a daily walk, still get "honey do . . . " lists from Jane, have a good appetite more often than not, and am able to enjoy the company of family and friends. It sure beats the alternative if I was not receiving treatment!

So, we shall see. The side effects are still manageable, and I'm able to do most of the things I want to do. I had a good July 4 weekend -- we did go to the parade in Novato on the fourth and saw a movie and had an all-American BBQ with family. Jane and I caught another movie; I made it to the fair to rock out with Los Lobos (and collect substantial anecdotal evidence that most white men just can't dance); we walked up at the lakes. Jessie and I took Violet out to Heart's Desire beach at Tomales Bay on one of the oppressively hot days last week. Talk about a water baby with absolutely no fear. I think I see some adventures in her future and would really like to part of some of them (one of my long term goals). Jane and I are looking forward to the end of the month when we'll head to Maui-- courtesy of our friends John and Lorraine Ritchie who are letting us use their home there, and the MC parent board.

As always, my thanks to so many who continue to provide prayers, support, friendship.

Peace,

Don

Supporting research

I frequently get offers of help or questions from people about what they can do to help. Well, an opportunity looms in the form of a Giants game. On July 18, a Friday night, the Pancreatic Action Network is doing a group ticket thing at ATT park. $10 of the price of each ticket goes to PanCan, an organization that supports research in pancreatic cancer. Game time is 7:15PM; they are playing the Brewers; yes, their home record is the worst in baseball and there is no guarantee of seeing a win; no, I haven't figured out the pitching rotation to see whether or not its Lincecum or Zito or someone in between. I hope to be there, although with the second chemo of cycle 8 the Wednesday before, there's no guarantee. You can get more info and purchase tickets by going to the following link:

http://www.pancan.org/Volunteer/ca/bay/documents/GiantsFlyer08.pdf

Go Giants!!!!!

Don

"Do as I say . . ."

My apologies for letting several weeks go by without any updates. I started this post a week ago, but never found the time to finish it -- partly because we were able to get away for a mini-vacation on the Russian River. But, better late than never, I hope.

With last week's chemo session, I finished six months and seven cycles of therapy; what began two days after Christmas as an unknown has become a regular part of my life, my routine, my new "normal." As with most recent sessions, Wednesday's infusion was something to endure, even though I was able to laugh at myself and share the laughter with a couple of nurses at a point I felt had to be the nadir of the past two weeks. I thought I had come to chemo well prepared with some Ativan on board and distracting devices, a new mystery novel and new music on my iPod, but the anticipatory nausea couldn't be held at bay. I also tried to make the session, as I do with all of them, a positive, visualizing the chemo drugs flowing through blood vessels like righteous napalm and engulfing my tumors, incinerating cancer cells. But, and here's that mind-body connection again, it seems that some things just cannot be avoided no matter the degree of preparation. Like one of Pavlov's dogs responding to a bell, I gag, retch and vomit just about every time I use one of the bathrooms on the infusion floor -- and use them I must since I can spend close to four hours there. It happened twice this past session. The first was all retching, but that caused a nose bleed -- more excitement! The second came after my infusion was complete, and I thought I had vomited clotted blood, and, worried, had the nurses who had heard the gross sounds coming from the bathroom check it out. Before they could say, "That's not blood," I realized that, yes, it was those blueberries again. We all had a pretty good laugh.

Since then, I've been trying to manage the accumulating and increasingly debilitating effects of chemotherapy. They are beginning to wear me down a bit as are various symptoms that may be due to the cancer or the chemo or something else entirely. Coupled with the emotional letdown that followed a busy week that included MC's graduation and my retirement and the Dipsea, the result has been a rather "flat" few weeks with too much time spent not following my own advice about attitude, living in the present, and believing. While all of that is to be expected, it does take some work to get re-focused, and that has been my goal for this rest week. I'm feeling better physically as the side effects slowly ebb, and that helps how I look at the world around (and inside of) me. I'm looking forward to this weekend with a trip to Novato to watch the Fourth of July parade -- Jessie and Violet are in it -- perhaps a movie or two (dates with Jane), and a day at the County Fair (Elvin Bishop and Los Lobos).

I see my doctor next Wednesday and begin my eighth cycle of chemo that day, with the possibility that I may be able to eliminate my middle day of treatment in each cycle, switching to an every-other-week schedule. It's a question of risk-benefit, of course. If I can get the same results -- stable disease or better -- with one less chemo treatment and a reduction in the accumulating side effects, it sure seems like the thing to do. I'll know more next week and will post an update toward the week's end. Until then, I'll try to practice what I've been preaching.

Peace,

Don

The Dipsea, CT scans and C7D1

Sunday, June 8, was a very good day for me. I was able to start and finish my tenth Dipsea race. While I covered the 7.1 miles from Mill Valley to Stinson Beach more slowly than in any past race, finishing 607th, it was the most meaningful crossing for me. Being able to do it meant that I was alive and relatively healthy, both very good things, six months after my diagnosis. I felt good after doing it, tired, but energized at the same time -- and my cancer seemed so far away. Perhaps the best part of the day was the support I received from so many -- from friends and family at the start of the race, during it (that's George Frazier on my left who ran with me from start to finish, and, on my right, Mike Sweeney and Darrell White who joined us along the way), and at the finish. The presence of my family -- brothers, sisters, in-laws, nephews and nieces -- at Stinson Beach made any aches and pains fade away; especially important to me were Jane, Matt, Jessie and little Violet, who enjoyed her first encounter with ocean wavelets courtesy of her Oompah (that's me). On top of it all, I was awarded the Norman Bright trophy for extraordinary effort in the race, and while quite an honor, I have to admit that I would rather have been in the audience, cancer-free, just another runner, standing and cheering someone else's achievement. I hope I don't sound ungrateful, and I do appreciate the recognition, but I really wish I didn't have to deal with the reality of my cancer.

And, what of that cancer? My latest CT scan shows no changes in the past eight weeks. The cancer has not spread; the tumors in my pancreas and liver have not grown. While I was hoping to be able to use the "shrinkage" word again, this is the next best news. My CA19-9 results from May 28 are also consistent with the scan with the level dropping a bit to 23. Although all good news, I let myself be a bit deflated by it. I think I forgot one of my own rules -- I need to take this journey one step at a time -- and got a bit ahead of myself, hoping for a report that would show the tumors shrinking away and offering a prognosis for a longer and more positive future, and then replacing it with a sense of foreboding. The result was a return of the sadness that has been an off and on companion on this journey since it began six months ago; tears flowed as various "what ifs" pushed aside the positive news that my cancer has been stable, has not grown. Not unexpectedly, I was back on that emotional roller coaster. But, I'm feeling better today, paying attention to my rules about attitude, living in the present, and not believing everything I think. It's a beautiful day outside, and when I finish up with this, I plan to take advantage of it -- to the degree my body will allow, anyway.

I began my seventh cycle of chemotherapy yesterday, and went into it with my now chronically low red-cell counts and low hemoglobin, which will get just a bit lower over the next couple of days. That produces the fatigue that continues to be the one side effect that I could do without. But, what the heck, it's a small price to pay for the opportunity to enjoy warm summer days with family and friends; it doesn't keep me from walking and jogging those now 11-minute miles, and it's not a bad excuse for lazing on the deck in my new hammock. As always, and I can't say this often enough, my thanks for the continuing love, friendship, and support from so many.

Peace,

Don

My Graduation Talk

This past week has been a busy one as preparations were made for Marin Catholic's graduation, which was held Thursday evening. When it was over, I received a number of requests for copies of the talk I directed to our graduates. The text of that talk follows (minus a few ad libs I threw in -- but this represents 98% of it):


Dear Seniors,

In 1989, a collection of essays by Robert Fulghum titled "All I really Need to Know I learned in Kindergarten" reached the top of the New York Times bestseller list. The essays reflected the truth in everyday form as Fulghum wrote with wit and wisdom about small lives with big meanings. The title, however, does not describe what I remember of my kindergarten experience. While, after 56 years, I’m able to recall very little of that first year of my formal education, two exceptions remain lodged firmly and uncomfortably in my long-term memory.

First, I remember a day when, with bladder full to near bursting, and too embarrassed to ask my teacher to go to the bathroom, I did what nature forced me to do --I peed in my pants, thinking, as five-year olds often do when faced with various “accidents” that it would go unnoticed. As you might guess, and quite unfortunately for me, that was not the case, and even greater embarrassment was the consequence.

Second, I was the only child in my class who was unable to make a pillow for nap time. The task seemed simple enough – take two paper plates, place shredded newspaper as stuffing between them, and sew the two halves together with yarn. For the life of me, I couldn’t figure out how to get the sewing done -- I had trouble telling right from left, and was unable to follow the directions of the teacher. Yes, I ended up pillowless at nap time. I learned yet another lesson in humility, or to a five-year old, more likely humiliation.

You are probably wondering why I’ve recounted these events from so long ago. Well, if I really did learn all I really need to know in kindergarten, imagine where I’d be now – and no, I am not wearing Depends under my robe tonight.

The point I want to make is that learning never stops and that the formal aspects of education are only a small part of what we actually learn. I don’t mean to imply that the thousands of dollars your parents have already spent and will continue to spend on your educations is money wasted, or that the skills you have begun to develop as readers, writers, curious scientists, and problem solvers are unimportant. However, if you haven’t already, you will find that the most significant lessons you will learn are those encountered as you live your lives. And, yes, as much as you’d rather not hear this, the older you are, and the more life experience you have, the more likely you are to have gained a bit of wisdom and a changed perspective of what life is really all about. Most adults know this. That’s why we are always trying to tell you what’s best for you. We also understand that, just as we did, you ultimately do need to find out most of this on your own. I would like to try to give you a bit of a head start, though.

So, what wisdom have I gained in the 56 years since kindergarten that I can share with you? There are tons of things I’ve learned in addition to don’t pee in your pants and not everyone can do things as well as everyone else. A lot of it is fairly trivial and comes in handy for crossword puzzle completion and filling awkward silences during conversations with strangers at various functions husbands find themselves at. Some of it is significant and should be shared: dream big, don’t worry about what others think of you, you can find some good in just about everyone, say thank-you, be earnest and honest, don’t be afraid of making mistakes -- I could go on and on, but, most recently, three life lessons have risen to the top of the “what I’ve learned from life” list in their importance to me, and it’s these I hope you can learn from. Simply said they are:

Attitude is everything; learn to live in the present; don’t believe everything you think. Again, attitude is everything; learn to live in the present; don’t believe everything you think.

Regarding attitude . . .

I keep a quote by Charles Swindoll posted on my refrigerator’s “door of wisdom” that sums up what I have learned:

"The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness, or skill. It will make or break a company ... a church ... a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude ... I am convinced that life is 10% what happens to me, and 90% how I react to it. And so it is with you ... we are in charge of our Attitudes."

I couldn’t agree more with Mr. Swindoll. Life often throws major league curveballs our way, presenting us with situations, like the end of a relationship, loss of a loved one, or in my case, a cancer diagnosis, over which we have little control. What we can control, the one string we can play on, is how we react to the challenges life presents. Never believe that you don’t have choices, even under the most dire circumstances. I am only here today because I made choices about how I would deal with my disease. I have chosen, very simply, to do whatever is necessary in order to continue to live as well I can for as long as I can, to focus on living, laughing and loving rather than dying. I know that my tumors are going to do what they will do and that the chemo drugs are going to do what they will do; I have little control over both. However, I can still control what I will do. Attitude is everything.

Once you accept the fact that you and only you control how you will deal with anything and everything life throws at you, the good, the bad and the ugly, the next step is learning to live in the present. While this sounds pretty obvious – aren’t we all living in the present -- It’s actually something quite foreign to many of us. Too much of our time is spent either rehashing the past, ruing our mistakes, rethinking the “what ifs,” and wishing for do-overs, or focusing on the future. While we may be physically in the present, we are all to often emotionally, mentally and spiritually distant. This is not to say revisiting the past, sharing pleasant memories, learning from mistakes or looking forward and making plans, setting goals and dreaming are bad things that we need to avoid. In fact, they are essential to our existence. However, the present, what we are currently doing and why we are doing it, can get pushed aside, and a casualty of doing so is our ability to enjoy what we have, in particular our relationships. Randy Pausch, a college instructor diagnosed with pancreatic cancer, in his “last lecture” urged his audience to “seize every moment because time is all you have . . . and you may find one day that you have less than you think.” Neither he nor I suggest that the solution is a hedonistic living every day like it’s your last. Rather, it’s about living each and every day thoughtfully and appreciatively, always keeping others in mind, paying attention to and nurturing your relationships, and never underestimating the importance of God, family and friends in your lives. Each day is a gift; find something good to be thankful for in each and every one. Learn to live in the present.

And, don’t believe everything you think. I’ve learned these last six months that reason alone cannot offer explanations for much of what I have experienced. This has not been that easy a lesson for me. I’m naturally something of a skeptic, and, prior to my illness, have looked for rational, evidence-based answers to questions. Fr. Daly can attest to this, as we have talked on a number of occasions about the struggles I have had with my faith journey. For the past six months, I’ve had to face the possibility that my cancer may end my life, and as my therapy has progressed, I’ve had cause to re-evaluate my evidentiary and scientific approach to problem-solving. This isn’t just “there are no atheists in foxholes” wishful thinking. I have discovered that there is power in prayer and that healing has a deep spiritual component, that “complementary,” non-traditional forms of healing teamed with my chemotherapy have produced positive effects for me, and that much of what happens and why it happens in the treatment of disease is inexplicable. Even as I face a future that is clouded with uncertainty, I maintain hope. Don’t believe everything you think.

A poem by Tenzin Gyatso, XIV Dalai Lama, yes, more wisdom from my refrigerator door, seems to sum up what I’ve tried to say:

Never give up,
No matter what is going on.
Develop the heart.
Too much energy in your country
Is spent on developing the mind
Instead of the heart.
Develop the heart.
Be compassionate,
Not just to your friends
But to everyone.
Be compassionate.
Work for peace
In your heart and in the world.
And I say again,
Never give up,
No matter what is happening,
No matter what is going on around you,
Never give up.

Thank-you for the support you’ve given me this past semester even though I’ve been something of an absentee principal. Peace, good fortune, and God’s blessings to each and everyone of you.
___________________________________

The next big event on the horizon is the Dipsea this Sunday. I'll let you know how it, my CT scan (next Tuesday) and doctor's visit went toward the end of next week. Stay tuned.

Peace,

Don