Big Eddy and the Bailers

This past week, I finished cycle nine of chemotherapy, the first after going to an every-other-week regimen of treatment. While more time will tell, the elimination of the third treatment seems to be working to alleviate the accumulating side effects of the gemcitabine. I've had minimal swelling in arms and legs, and the "heaviness" and tendonitis I've felt in my arms and lower legs seems to have abated somewhat. I've also added another anti-hypertensive drug to my pharmacopia, and I'm not experiencing the spikes in blood pressure that had become all too regular the past few weeks. It was getting a bit disconcerting seeing 175/105 as a BP to start the day; I could also feel the effects as a low grade headache, a pulsing tinitis and pressure in my neck and at the back of my head. Those symptoms have been reduced along with the normalization of my blood pressure -- normal for me anyway. The fatigue and other typical effects of a day at the infusion center continue, but the extra recovery week each cycle means that I've more or less recovered by the time I get zapped again. The key to continuing to treat this cancer as a chronic disease is my ability to tolerate the toxic effects of the chemo drugs. My blood work continues to show normal liver and kidney function, good signs. I'll know whether or not the reduced chemo schedule is still keeping the cancer cells at bay in early October when I get my next CT scan. Until then, I'll continue to make the most of each and every day.

Putting an exclamation point on my resolve to do just that was the news this past week that Gene Upshaw, ex-Raider and NFL players union president, had died of pancreatic cancer just four days after learning that it was the cause of his illness. At the time of my diagnosis, I had thought four months was way too short a time to continue to live, but four days? The news caused the inevitable reflection and introspection on my part, with some of the focus on death and dying, the uncertain nature of the future and the doubt it can bring, but more importantly, it reminded me to make each and every day matter in some way no matter how seemingly small or inconsequential. It's not always an easy thing to do, and too often I'm reminded of my human frailties. But, life goes on. I'm off for a bout a week to the great north -- Alaska -- to visit with my brother and his family and get in a little exploring in and around McCarthy and the old Kennicott copper mining country. It's an area dominated by the glaciers of the Alaska Range and the major river they feed, the mighty Copper, a river whose washwater gray and silty waters carve through a canyon of their making. This is where the title was going to connect -- rivers as metaphors for life with their one-way flow, swirling eddy currents, calm stretches and roaring whitewater, the need to bail your boat of water you take on while running them . . . I think you get the picture, and I'll let you fill in the numerous gaps I've left . . . a participatory blog!!

Take care one and all. As always, thank-you for your continued support and prayers.

Peace,

Don

Oh, if you'd like to help in the fight against pancreatic cancer, my sister-in-law, Margaret, is running a half marathon in November to raise funds for Pancreatica. You can find out more at www.active/com/donate/pancreaticabigsur08/Margaret55

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