Shattered

Those who hike in mountains or other areas with cold winters are familiar with frost-rivened rocks and boulders such as this one. They dot the landscape, showing the effects of years and years of water alternately freezing in minute cracks, expanding and putting pressure on the surrounding rock, and then melting leaving larger cracks or significant fractures. The process is repeated, over and over again; large boulders are reduced to piles of rocks, those rocks, in turn, to pebbles, the pebbles eventually to the sandy components of soil. So, what does this have to do with what's up with me?

In my last post, I talked about the worsening back pain I had been experiencing and the fact that a PET scan had ruled out my cancer as the cause. I also indicated that I was to have an MRI to find out just how bad things had become in my neck due to degenerating disks. While the MRI showed the extent of the disk disease, it also showed something new in my first thoracic vertebra -- a fracture, compression and other evidence of metastasis. All that was confirmed this past Monday by a radiation oncologist. I have a tumor in my first thoracic vertebra. It has grown inside the bone and not unlike the action of frost wedging a rock apart, has applied pressure and caused it to fracture in at least ten places, collapsing a bit and pressing on nerves -- the source of the pain! The treatment is pretty direct and began Monday afternoon. Radiation is applied directly to the tumor cells, hopefully frying the little buggers and shrinking the tumor. As it shrinks, less pressure should be applied to bone and nerves and the pain should be reduced and the bone, unlike the shattered rock, given the chance to heal the fractures. If all goes as planned, I should finish radiation on January 12 and begin my new chemotherapy regimen a month later -- it looks like concerns about immune system suppression may prevent an earlier start.

"If all goes as planned . . ." Lately, little seems to be going that way, and I continue to learn to expect the unexpected. It's easy to say that, but much more difficult to live through. This recent detour -- we are beyond bumps in the road at this point -- has been especially tough, both physically and emotionally. I have had to work hard to follow my own advice about attitude, to do my daily affirmations, to be thankful. It's worth the work though. I may feel beaten up by all of this, but I'm not yet beaten.

Peace,

Don

Just a bit worse for the wear

Well, Im getting the "chemo holiday" that I had hoped for, but not for the reasons I expected nor for as long. I will not begin the new chemotherapy treatment schedule until January 7. It will be similar to how I began my original therapy just about a year ago, with three weeks on and one week off each cycle. I will be receiving Abraxane, a taxol derived from the bark of the Pacific Yew -- just another reason we should be conserving our temperate West Coast forests -- that has been approved by the FDA for the treatment of metastatic breast cancer but not pancreatic cancer. However, Dr. Tempero has several patients on it and it has shown good early results. I'm hoping for the same.

I do need to wait to start though, since I'm still dealing with the effects of the previous therapy. My blood pressure is still not well-controlled even though my medication has been tweaked several times in the past two weeks. I'm now taking four different medications for hypertension plus a diuretic -- my kidneys are still recovering and are not yet back to normal function. I have seen some improvement since getting out of the hospital; most of the edema I had is gone, although my legs still can get pretty swollen with fluid. More importantly, I also had a PET scan which showed that there are no new metastases; given some significant back pain I've been having, there was a concern that the cancer had invaded my spine and ribs. Fortunately, that is not the case. The scan showed that the cancer was still in those places we've always known of and that the tumors remain relatively small -- so far they are not interfering with any pancreatic or liver function or my breathing.

The back pain has continued, however, so it has meant a trip to a spine specialist and the scheduling of an MRI this afternoon. I suspect the findings will show that degenerating disks and pinched nerves in my neck and upper back are the culprits; I'm hoping that's the case and that a steroid injection will take care of the pain. It's just a complication unrelated to the cancer that I'd rather not have to deal with much longer.

So, I'm a bit worse for the wear of this past year, but have all the reasons in world to feel good about where I am. Last week, Jane and I went out to dinner to mark the anniversary of my diagnosis. While I have to admit to lots of mixed emotions lately, given how dire things seemed a year ago, it was definitely a time worth celebrating. I'm still alive, and except for some recent bumps and potholes in the road I'm traveling, doing fairly well. Last year at Christmas, I had every reason to think it would be my last. That clearly has not turned out to be the case. I'm alive and continue to enjoy the love and support of family and friends; I can receive no better gifts. Nothing more needs to be said other than my best wishes to everyone for a healthy and happy Christmas. I hope to be able to say the same for Christmas, 2009.

Peace,

Don

A perfect storm . . .

Looking at the picture of Violet on her surfboard, you might ask, "What storm?" Even though we ran into the first winter rains of the season on our family trip to Kauai the week before Thanksgiving, they hardly amounted to a storm. True, they reduced the number of beach-going days available, but also provided opportunities for doing touristy stuff -- checking out waterfalls, cruising up the Wailua River to the Fern Grotto, riding an old plantation train; and, Jane and Jessie had no trouble finding shopping opportunities. It was a good vacation with plenty to do and plenty of good old down time.

The reference in the title is to the physiological storm that had been brewing in me for the past several weeks. A number of factors, all related to my chemotherapy, produced a convergence of events inside of me that left me feeling poorly and which eventually required my hospitalization the day before Thanksgiving. During the two weeks since my last chemo day, I was finding myself increasingly short of breath, with little appetite or energy. My red blood cell and hemoglobin counts had dropped even lower than they had been, the amount of protein in my blood had also decreased, and a measure of failing kidney function had increased dramatically; at the same time, my blood pressure had continued to increase. The result was that I began to accumulate fluid (that should have stayed in my blood vessels) in tissues throughout my body including my lungs -- I had added 15+ pounds in two weeks and was doing a pretty good impression of the Pillsbury Doughboy. All of this put increasing pressure on my heart, and I was admitted to the hospital with acute heart and renal failure. Tests showed that both my heart and kidneys were okay physically -- no damage to tissues, etc. -- but the functions of both had been impaired. Treatment included two units of blood to bring my counts back up, diuretics to reduce the fluid buildup, and changes in my blood pressure meds; I also was started on thyroid medication since blood tests showed it was also on the fritz. I was discharged after just one night in Marin General, but was barely home before some complications, in particular vomiting and intense back and chest pain, sent me right back to the emergency department. After more x-rays, MRIs, a CT scan, and lab tests that seemed to remove about a quarter of the blood I had just received, the bad stuff (bleeding aorta, pneumonia) was ruled out. I spent another two nights at MGH; since I had continued my vomiting ways and had trouble even thinking about eating or drinking, I needed to stay until I could start taking meds orally again. While I could write more about that experience and certainly received good care, suffice to say that I couldn't wait to be discharged, and that I was on Saturday.

Since then, there's been more tinkering with my anti-hypertensives since my blood pressure still isn't well-controlled; I have lost much of the built-up fluids but still have a way to go; I'm feeling stronger; the shortness of breath is gone; my appetite is returning; the back pain has lessened but still is making it difficult to sleep - I have an appointment to see a spine specialist next week and hope to know more then. And, I just found out today from Dr. Tempero that I get at least another two week reprieve from chemotherapy to let my body recover. I had had a CT scan Monday and it showed that the tumors in my abdomen continue to be more or less unchanged from the scan nine weeks ago (since the condition of my kidneys didn't permit the use of a contrast dye during the scan, no measurements were taken). The scan of my chest does show that two of the "tiny" nodules in my lungs have increased in size, but remain small and are not affecting lung function. When chemo resumes it will be a different regimen. While the gemcitabine and avastin did their jobs for almost a year, they've essentially run their course. Assuming my kidney function has improved in two weeks, I'll begin treatment with Abraxane, a drug approved for metastatic breast cancer but that has shown good recent results in slowing or reversing the growth of pancreatic cancer tumors. It'll be back to a once-a-week, three weeks out of four, treatment schedule. It has just a 30 minute infusion time, so I'll be spending less time at the infusion center. It does come with it's own package of side effects, so look for a hairless Don Ritchie after Christmas who avoids crowds and sick people. As with the previous treatments, it will continue as long as the cancer is controlled and/or until it becomes too toxic to my body.

So, I still look forward to that "chemo holiday" of several months as I continue to redefine what normal means in my life. Hopefully, I'll find the success several others have had with this new drug and will be able to get a break in the not so distant future. More important is that it keeps me alive. The longer I can remain above ground, the greater the likelihood that additional treatments will be discovered. As always, I offer my thanks and appreciation to all who continue to offer me support by their presence in my life, their medical expertise and care, their prayers, their kind words, and last night, the gift of some freshly caught abalone! My special thanks to my best friend and soul mate, Jane; this difficult journey would be impossible without her.

Peace,

Don

A bump in the road

Sorry I haven't written in a while. I had intended on updating the blog after our family trip to Kauai, but things got in the way. After my last chemo treatment and while in Kauai, I began developing some significant body-wide edema; in addition, I started hitting new highs with blood pressure readings and I became more anemic. The results, once home, were a trip to a cardiologist, more blood work, chest x-rays, and eventual admission to Marin General Hospital with acute kidney failure and associated congestive heart failure. It isn't quite as dire as it sounds, but it required a transfusion of two units of blood, treatment with diuretics, and changes in my anti-hypertensive regimen. The culprit(s) in all of this are the chemo drugs I've been taking for almost a year. I am home now after four days in the hospital, and getting better. I'll post a more detailed message later this week.

Peace,

Don

Perspective

Follow a small child, Violet on a day at the beach for example, and you will quickly discover that her path through the world is anything but a straight line. One minute running over packed, wet sand, the next looking at the world upside down, then chasing a gull or watching sand spill through her fingers. It's fun to watch, although sometimes exhausting to keep pace. It's also a good reminder to those who witness it, that life, no matter how carefully planned, will never proceed neatly from point A to B to C . . .

Last week, I began my twelfth cycle of chemotherapy. Due to ongoing problems with the management of my blood pressure -- it was still bordering on stratospheric -- the avastin was held back and only the gemcitabine administered. Since then, there has been another change in my anti-hypertensive medication, swapping out a beta-blocker (which had caused my pulse rate to drop into the range of a hibernating marmot) for an alpha-blocker. It seems to be working. I'm finally seeing normal blood pressures at least part of the day, and the higher numbers I'm getting would be considered mildly hypertensive -- not the potential "blow a gasket" numbers I was experiencing last week. I'm not absolutely sure what this means in terms of future treatments. I think, if my blood pressure is reasonably low, I will receive another dose of avastin next week during my scheduled chemo appointment. What happens after this cycle has been completed is less clear. I am going to take an extra week off from treatment so that I'm able to celebrate Thanksgiving. I have a CT scan scheduled early the week after Thanksgiving, and the results of that scan will help inform decisions about what's next. Options include a thirteenth cycle of avastin/gemcitabine, a chemo holiday of indefinite length, or a change in my chemotherapy regimen. Dr. Tempero has talked to me about a "plan B" (and no, not from outer space) that sounds promising. So, I wait, but not passively. Life, with or without cancer, is about living.

Peace,

Don

PS: Break a leg -- er, perhaps not the right words of encouragement for those planning to run a race -- to my brother Jim and his wife Margaret who will be running a half-marathon in Monterey on Sunday in support of pancreatic cancer research; Margaret has raised nearly $5,000 in contributions. Go Ritchie's.

Needles and pins . . . pins and needles

I'm writing after returning from the lab and my every-other-week blood draws. The blood testing is required before each chemotherapy treatment in order to be sure that blood counts and kidney and liver function are within tolerable ranges; an infusion can't proceed if there's evidence that the chemotherapeutic agents are wreaking excessive havoc on my body. So far, these tests have always shown that while there have been changes in several factors, they have fallen within safe ranges and I've been able to keep to my treatment schedule. That's not to say that they don't effect me and how I feel. The chronic anemia has been ever present, and the fatigue accompanying it has been the most significant side effect I've dealt with. I've written about that before as well as the increases in blood pressure caused by the avastin and the attempts to keep that under control. That problem continues, and yet another drug has been added to the regimen of pills and injections I take each day to deal with blood pressure, anxiety, pain, nausea, formation of blood clots. This latest addition to the pharmacopia seems to have had an impact on lowering my blood pressure which had been pushing higher again, but not to the degree I or my doctor would like to see. It may mean that my chemotherapy treatments need to be changed and the avastin held back -- whether temporarily or permanently I'm not sure. I'll find out more Wednesday when I see Dr. Tempero. I am reaching the end of the one-year trial in which I've been participating, and she has talked about the possibility of a "chemo holiday" at some point. Perhaps it will come a bit sooner than later.

It seems weird, for lack of a better word, to consider the fact that I'm reaching anniversaries, in many ways of dubious sorts. It was over a year ago that I first began experiencing the symptoms that eventually led to my diagnosis. Just a year ago yesterday, I had my first CT scan ever. I remember waiting several days for the results and breathing a sigh of relief when they didn't show anything in the way of "masses" or tumors. It seemed then that the really "bad stuff" had been ruled out. Little did I know that the findings, in retrospect, showed that the cancer had already spread to my liver, even though the primary tumor had failed to appear on the scan. Pancreatic cancer is not only aggressive and resistant to most chemotherapeutic agents, it's sneaky! Ten months ago, two days after Christmas and 17 days after my diagnosis, I began the treatments that will continue this Wednesday and which have so far proved effective in stabilizing the disease. While I would just as soon not have to deal with these anniversaries -- I prefer those associated with weddings and other significant life events -- they are part of my reality, a reality that leaves me with mixed feelings. On one hand, call it the silver lining point of view, I am filled with gratitude for being alive and feeling fairly well ten and a half months after receiving my diagnosis, enjoying the time I've spent with family and friends and the support I've received from so many. On the other hand, call it the borrowed time point of view, it's difficult at times to escape the feeling that at some indeterminate time in the future, I will have played the string out.

Whatever the outcome, I'm doing my best to make the most of my time. Jane and I, courtesy of a retirement gift from MC, spent this past weekend with the hoi polloi at the Harvest Inn in St. Helena. We visited some of my old haunts -- Conn Dam where we first camped as a family and where I learned to swim, a swimming hole on the Napa River we'd walk to from my cousins' house. I was able to spend time with my cousins and my brother Jim and his family and took a number of walks down a multi-branched memory lane. The week before, I got to babysit Violet a couple of days and join her and Jessie on a walk out Tennessee Valley to the beach. I managed to work in acupuncture and a massage as well. The weekend before that, I made it to the class of 1978's reunion and saw many people I had taught and coached -- again more of those strolls reminiscing through the past. I think many of the stories have been embellished over time; regardless, I laughed a lot, and is there better medicine than laughter?

And, finally, the weekend before that, my brother Bob and I headed up to the mountains for four days. The plan was to stay at June Lake near Mammoth on the east side of the Sierra and use what I expected to be warm and sunny days to explore Mono lake and its environs and then head up to Tuolumne Meadows in Yosemite for some hiking. Wouldn't you know that we picked the one weekend when temperatures plummeted and blizzard-like conditions hammered the Eastern Sierra. We had planned on taking the shortest route to our destination, a beautiful drive through Yosemite's high country up to and over Tioga pass and then another 22 miles to our cabin. Unfortunately, we got only as far as the meadows, 250 miles from home, 8 miles from the pass, 30 miles from the cabin; a ranger turned us around 45 minutes from our destination. We had to retreat, and based on sketchy evidence that Sonora Pass might still be open, raced out of the park and through Sonora only to discover near Twain Harte a sign indicating it had also been closed by the storm. Some checking with Caltrans showed that all of the trans-Sierra passes south of highway 88 were closed. We spent the night in Twain Harte, and then drove back into the park the next morning hoping that Tioga Pass would open some time during the day. We did two short hikes while we waited near the road closure in Crane Flat to hear the news we had hoped to hear. We got anything but that. About 1:30 in the afternoon when it became clear the pass wasn't going to be opened, we left the park once again, this time on a tour of the Gold Country via highway 49 up to Jackson and then over highway 88 and down to highway 395 to June Lake -- a six-hour tour (twice that of the Minnow and nearly with the results of the Donner party) with it's own share of stories. But we made it and spent two days birding and hiking at Mono Lake and in the park (the pass had opened the day we headed home). We took a nice walk out to North Dome, a place I had never visited.

Life goes on even though at times it's on pins and needles. I turn 62 this coming Saturday; my birthday wish is that I celebrate my 63rd. I hope to continue to receive the gifts of prayers, support, conversation, shared meals, walks and talks, and time -- the most wonderful gift of all. Make every day matter; tell someone you love him or her.

Peace,

Don

Sealed with a kiss . . .

Ah, you biologists out there are correcting me already. Those aren't seals in the photo, but sea lions. You can tell by the ears (true seals lack external ears) and other identifiers. So be it, but "sea-lioned with a kiss" just doesn't have the effect I was going for. This past weekend, Jane and I were able to celebrate our 39th wedding anniversary at Pacific Grove courtesy of Ken and Alice Hansell. It's one of our favorite places, and we spent our time walking, sleeping in, eating out (the Fishwife is a must), taking a pontoon-boat tour of Elkhorn Slough (source of the photo), and just enjoying one another's companionship. Not unlike the sea lions, we took pleasure in just sitting side-by-side, warm sun on our backs, taking in the sights and sounds of the busy coastline -- the crashing of waves on rocky headlands, the changing colors of sky and ocean, with bird, seal, otter and people-watching thrown in for good measure.

The week that followed was a mix of medical appointments, in particular a CT scan this past Wednesday and chemo and a doctor's appointment yesterday, and time with family and friends -- walks, a day of Violet-sitting, a visit to the Academy of Sciences, an afternoon with Violet, Jess, my sister Donna and her baby, Kaylee, at the Discovery Museum in Sausalito. A busy week and all done in the shadow of the anxiety that comes with a CT scan -- "What will it show?" is the question that dogs me for several days each time one is scheduled. Since I'd been feeling pretty good since the last scan, other than the side effects of the chemo (and I look a little like the sea lion in the photo this morning), I was hoping for a good report, at least one that would show that the disease is still under control, and that's what the scan did show for the most part. The multiple tumors in my liver have all stayed the same or decreased slightly in size; the tumor in my pancreas has become "less visible," which I hope means that it is becoming smaller as well. While the shrinkage is not occurring with the speed of a "frightened turtle," it's definitely good news. There was a little wrinkle in the scan results though. There has been a small change in the tiny nodules in both lungs that have shown up on the scans since February; nothing too dramatic, but a change nevertheless. There has been a question from the outset about whether or not these nodules are related to the cancer; they may be of infectious or inflammatory origin. Different radiologists have given different interpretations. It does seem unlikely that the chemotherapy would be controlling the growth of the many tumors in my abdomen and not doing the same with those elsewhere. Dr. Tempero is of that mind and says the control of the growth of tumors in my liver in particular is the important point to note. So, I will try to focus on the good news and apply Alfred E. Neumann's life philosophy to these small changes in my lungs -- "What? Me worry?"

As always, my continuing appreciation for the support so many have given me in so many ways.

Peace, Don

" . . . who do not trouble their lives with forethought of grief."

I completed my tenth cycle of chemotherapy last week, a session that ended as most have done for the past several months. It was followed by the expected several days of physical fatigue, of that "chemo buzz" I've learned to accept as normal. While I've learned to take it easy on my body during those days immediately following an infusion, I haven't always been able to do so mentally and emotionally, and for the first time in quite a while, the fatigue was accompanied by a profound weariness of heart, mind and soul. It was due to a number of things, but mostly the fact that I have trouble at times taking my own best advice: attitude is everything, live in the present, don't believe everything you think. I certainly spent too much time thinking, perhaps over-thinking my situation, on my post-chemo rest days -- measuring my experience against various statistics, getting into a "waiting for the other shoe to drop" mentality, assigning every ache and pain some dire significance, grieving losses that have not happened. The effects on my emotional health were predictable as I slipped into funk -- a steady and steep downhill ride on that emotional roller-coaster that has been fairly tame for several months. I know that this is a normal and expected response to living with cancer, but it is a bit disconcerting when it happens; and it just does -- there's no prelude, no trigger that I can identify. And, as I've learned, it passes, sometimes as quickly as it appears. That's where I am now; I'm OK after a weekend of time with family, seeing friends from my old coed, slow-pitch softball team (not that they are old -- no one's as fast as they were a few years ago, but they play with the energy and enthusiasm of kids, and their enjoyment of the game is infectious), a nice walk on the last day of summer, and as a bonus, the Giants taking two of three from the boys in blue.

Physically, the fatigue is lessening, and I'm feeling pretty good, although increased blood pressure continues to prove vexing. I get to thinking it's under control after a change in medication, and then I start seeing spikes in it again. It was high this AM even after recently doubling the dose of the additional medication I started taking a few weeks ago. Other than that, all else seems to be status quo. I'll know more after my next CT scan on October 1. Until then, I've got lots to look forward to including a trip to the new Academy of Sciences (yes, with Violet), a massage, a couple of walks with friends, and the celebration, with Jane, of our 39th wedding anniversary on September 27.

One of the things that helped turn the tide last week was a poem by Wendell Berry that my brother, Bob, had sent me. It's actually one that I keep in a journal of poems, quotes and such that I've gathered over the years, but don't review often enough. Anyway, it came at the right time:

"When despair for the world grows in me

and I wake in the night at the least sound

in fear of what my life and my children's lives may be,

I go and lie down where the wood drake rests in his beauty on the water, and the great heron feeds.

I come into the peace of wild things

who do not trouble their lives with forethought of grief.

I come into the presence of still water.

And I feel above me the day-blind stars waiting with their light.

For a time I rest in the grace of the world, and I am free."


It always seems to be about perspective. As always, my thanks for friends and family and the support they lend.

Peace,

Don

Finding a cure, providing hope

I'll be up front with the purpose of this post -- it's an unabashed and somewhat self-serving call for monetary support of pancreatic cancer research at UCSF. In December, 2007, I became one of more than 30,000 Americans diagnosed with pancreatic cancer that year. Like most, the diagnosis came only after the cancer had spread to lymph nodes and other organs; it was already at stage IV and inoperable. The only treatment options were no treatment other than palliative care for the 3-4 months I could have expected to live, or a limited number of chemotherapy alternatives. Given the aggressive nature of pancreatic cancer, I sought an aggressive approach to its treatment and found that at UCSF. I entered a clinical trial directed by Dr. Margaret Tempero that combined two therapeutic agents, one a drug approved by the FDA for treatment of pancreatic cancer and a second that has proven to work in other cancers. I began treatment two days after Christmas and, almost nine months later, continue to live with my disease, with reduced tumor activity and no significant changes in tumor sizes; there has been no evidence of any further spread of the disease. So, I count myself very fortunate, but still wonder how long I'll be able to maintain my present condition. I've already reduced my chemo schedule somewhat due to the increasing toxicity of one of the drugs; I've redefined what normal means for me. What I and those other 30,000 plus people need are more effective therapies, preferably those that attack tumor cells specifically and would hopefully eliminate the tumors altogether.

What will it take to find and develop those therapies? If research and development of effective treatments of breast and prostate cancers are used as successful models, the answer lies in funding. The ideas are there. Increasing scientific evidence and new technologies are pointing toward solutions, including those being developed by researchers at UCSF. Their efforts, though, are hampered by a lack of funding. One would hope that the federal government would take a lead role in funding cancer research -- imagine if the money spent on waging wars were re-directed to the development of treatments of diseases that kill tens of thousands more Americans annually than Iraqis have. But that has not happened to the degree necessary and the result is that researchers need to seek sources of private and corporate funding. That's where you come in.

There is promising work being done regarding pancreatic cancer at UCSF, but it can only progress with continued financial support. If you are able to donate, you can do so by sending checks to: UCSF Pancreas Cancer Research Fund, Box 0248, San Francisco, CA 94143-0248. If you are able to contribute a substantial sum, or would be able to become a corporate sponsor, please contact Elizabeth Dito, Dr. Tempero's assistant, and she can put you in touch with the appropriate persons at UCSF's foundation (ditoe@medicine.ucsf.edu).

I'd like to be able to live long enough to see the development of treatments that will offer me and thousands of others continued hope for a longer life. The faster those treatments become available, the better. Please do what you can to make that happen.

Peace,

Don

"Hey Rocky, watch me pull a rabbit out of my hat."

This particular ungulate is not Bullwinkle J. Moose, author of the title quote, sidekick of Rocket J. Squirrel, graduate of Whatsamotta U., and resident of Frostbite Falls, Minnesota. That fact should be abundantly clear to fans of the Jay Ward cartoons, since Bullwinkle never walked on all-fours and always went into the field dressed in a pair of gloves, or at times various costumes including a tuxedo. It's a young bull I saw on my recent visit to Alaska, one of several archetypal animals associated with our 49th state that crossed my path. He was in the company of a cow (nudge, nudge, wink, wink) at the time. I also saw more moose, Dall sheep, caribou, black bears -- two that were close to the trail we were walking, but more interested in the berries they were eating than us, although one did "woof" in our direction -- a grizzly bear from a distance, bald and golden eagles, a field full of sandhill cranes, and more. It was a good trip, not only from the wildlife viewing standpoint, but it was good for my soul.

It's been 25 years since I've been north late in the summer, and I had forgotten how soon Fall comes; colors were turning and hillsides were ablaze with reds and yellow; nights were frosty. Frequently the backdrop included glaciated peaks of the Alaska or Wrangell Mountains while the Copper River or one of it's many tributaries provided the foreground scenery. While Alaska is getting more than its fair share of press lately due to recent political events, it is an amazing place just in and of itself. It is big, wild, spectacularly scenic in a way that words and photos cannot hope to capture. Being able to experience it with my brother, his wife and her sister, on a whirlwind road trip from Fairbanks to McCarthy and back made it so much better. We hiked, explored the original Kennicott copper mining area, grazed in berry patches, ate fresh salmon, walked on a glacier (not far since it quickly became clear why those on guided tours wore crampons), and enjoyed the company of one another. As an added bonus, I got to spend some time when we were back in Fairbanks visiting with Jenna of crane-making fame and her family. I came away with more cranes -- we're up to 960 -- as well as homemade honey and raspberry jelly; I hope I left them with something.

A few days after getting home, I traded the wilds of Alaska for my now normal routine and began cycle ten of chemo. It went much better than those of the last few months. I still crashed when I got home, but managed to leave the infusion center without getting sick. Sleeping my way through most of it may have done the trick. My latest CA19-9 numbers are good and still consistently low -- the latest, taken last Wednesday, was 20. The every-other-week regimen seems to be working at keeping the cancer in check while slowing the accumulating side effects of the therapy. This is good. I'll know more in three weeks when I have another CT scan. The time before a scan often is like waiting to see what Bullwinkle would pull out of his hat in that cartoon from so many years ago.

In the meantime, I'm trying to make good use of that time. I baby sat Violet today and will do so again tomorrow. We played at a local park in the morning, read a number of books, had a little disagreement about nap time that ended with her falling asleep to my off-key humming of an old John Denver song . . . what a joy. Maybe we'll take a walk in the open space tomorrow. It's funny, in that weird-funny sort of way, that time with her is one of the opportunities that cancer has enigmatically provided me. Well, enough of the "stop and smell the roses" stuff -- you've heard it all before. Life is good; it would probably be better without cancer. But who knows?

Thanks, as always to friends and family for being there for me.

Peace,

Don

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

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

Just some news

Yesterday's chemo, the final infusion of cycle six, has left me feeling pretty ragged today, so I'll be fairly brief. The past two weeks have been fairly good ones. There have been no significant changes in my health, my CA19-9 levels remain low (26 for blood drawn on May 14), and other than the side effects of the chemo drugs, I've felt good physically; good enough, in fact to do a practice walk/run over the Dipsea this past Monday with George Frazier keeping me company (and on the safer portions of the trail -- no shortcuts this year). Emotionally, there were a couple of days, interestingly coinciding with our grey and wet weather, when a bit of melancholia seemed to settle in, but that is to be expected. Not a day passes without thinking to one degree or another about my cancer, and sometimes it just makes me sad. It's as if that character from the Lil Abner comic, Joe Btfsplk, the guy with the cloud over his head, shows up now and then and brings with him the sense that the "other shoe is about to drop." But it passes, more quickly sometimes than others. It helps knowing how much support I have as this journey proceeds, so thank-you to family and friends for your prayers, company on walks and runs, shared laughter and occasional tears. My special thanks to Jenna Zusi-Cobb, the ten-year old Alaskan who has been making me 1,000 origami cranes, each a symbol of healing. She's been doing this since December and is 75% of the way to her goal -- and this for someone she had never met until just recently. Living with cancer has been a humbling experience.

Next week is a rest week; cycle seven begins on June 11. It's good timing. I'll be recovered enough to participate in the graduation ceremonies, a nice way to put closure on my career at Marin Catholic, and to survive my 10th Dipsea Race unscathed. On the 11th I'll also meet with my doctor and get the results of the previous day's CT scan. I'll write again after that with hopefully continued good news. If you need more to read today, the Marin IJ did an article on my "retirement." you can find it at the following link:

http://www.marinij.com/marinnews/ci_9406365

As always, my deep appreciation for your continued love and support.

Peace,

Don

Stayin' alive!

No, no plans on my part for a disco revival, but rather plans to continue to live as well as I can as long as I can with cancer, always hoping to be cancer-free. I need to restate this, perhaps more for myself than those who read these journal entries. A week or so ago I was given a copy of Randy Pausch's book, "The Last Lecture." I had been made aware of him and his lecture soon after my diagnosis. For those unfamiliar with him, he is a teacher who was diagnosed with pancreatic cancer in September, 2006. At the time, it appeared to be confined to his pancreas, and surgery was done to remove it. Several months later, however, he learned that it had spread to his liver and spleen. At that time, he felt that he had been given a terminal diagnosis and that chemotherapy would be palliative, perhaps extending his life, but a life that would end due to the cancer. As a result, he wrote and delivered his "last lecture." He is an amazing and courageous man, and his lecture is an inspirational presentation I could only dream of giving, one filled with life lessons; it is all about living a good life rather than dying. However, since first visiting his website, I have been troubled by what I've seen as a concession to the terminal nature of his illness. Call me unrealistic, "pollyanish" perhaps, but I cannot look at my disease that way. It is difficult enough knowing that this disease can kill me, but I am more than a statistic; at this point, I can't, I won't tell myself that it inevitably will. I know I face a difficult prognosis, but I'm approaching everything I do that can be considered part of my healing therapy with the idea that it will prolong my life, hopefully until I die of old age. My brother Bob sent me an unattributed saying yesterday that speaks volumes for the attitude I feel I have to bring to my treatment: "When facing a difficult task act as though it is impossible to fail. If you're going after Moby Dick, take along the tartar sauce."

So armed with a variety of therapeutic condiments, I've had a good three weeks since writing last. Other than the variable side effects of chemotherapy, I've felt well -- I've been relatively pain free, recouped most of my energy during my rest week, taken in a Giants game (they won!), run and walked in a Tamalpa club race, had a spa massage (a first), celebrated Mother's Day with family including the newest mother in the clan, Jessica. I also began my sixth cycle of chemo this past Wednesday, and while the infusion sessions and their immediate aftermath have become something to be endured, chemotherapy and the collective power of prayer, my own prayers and meditation, acupuncture, diet, and so many other good things in my life, are continuing to work positively. My CA19-9 levels have dropped to 25, indicating a continuing reduction in tumor activity. I'll know more about tumor status in a few weeks after my next CT scan. In the meanwhile, I continue to enjoy family and friends and prepare to run my tenth Dipsea.

I know that running a course that requires signing a waiver indicating that great bodily harm and even death could occur on the course may sound crazy to some, but being able to get from Mill Valley to Stinson Beach on June 8 has more than metaphoric or symbolic meaning for me, although given time, I can certainly wax rhapsodically about those aspects. Cutting to the chase, though, it was one of the first "long term" goals I set after finding out I had an aggressive cancer for the simple reason that realizing the goal would mean that I'd be healthy and alive six months after my diagnosis, nine months after symptoms first appeared. It's a big first step toward stayin' alive, stayin' alive . . .

As always, my sincere appreciation for continued prayers, positive thoughts, companionship, friendship, hugs, You Tube videos, and your loving care and concern.

Peace,

Don

"If it doesn't kill you . . ."

" . . . it only makes you stronger." How often have you heard that somewhat oxymoronic old adage? Coaches use it to validate their training methods, others in an attempt to offer a rationale or encouragement to those dealing with a variety of events in their lives -- physical injuries and illnesses, ends of relationships, problems at work or school. It's popped into my head a few times the past couple of weeks, in particular after I've finished retching and vomiting the contents of an almost empty stomach right after chemotherapy -- an observation that those of you who know me as the biology teacher I am may appreciate, well maybe not appreciate, but not find unexpected: fresh blueberries stay in your stomach long after most of the rest of breakfast has moved on.

Chemotherapy, does seem to be one of those things that kind of fits the adage. So far, it hasn't killed me, although "death" from any one of a number of causes does sit among the rare, but possible, side effects of both drugs I receive. It hasn't left me stronger physically, either -- and I'm not relating all of this looking for sympathy nor am I "sandbagging" (my running friends know what this means) prior to the Dipsea; people ask how things are going, so I hope this answers the question. In addition to the nausea and digestive distress that has accompanied my last several chemo sessions (although it hasn't lasted past the day I get infused -- as much a "head" thing as something physical), I get regular nosebleeds, my hair (head and body) is thinning, I bruise easily, my blood pressure has increased (requiring an increase in the dosage of my blood pressure medication), blood counts and hemoglobin levels drop, and a fatigue that sleep doesn't seem to relieve settles in for several days -- that's the side effect that most affects my life. It leaves me with arms that feel heavy, a head that gets "fuzzy" (or fuzzier for those who have seen me enter a room and wonder why I'm there), and a general malaise -- sometimes I feel too tired to read but not to sleep, if that makes sense. It gets better with the passing of time, although just as am feeling almost normal, three weeks out of four, I'm back in for another dose of what I've come to call "anti-performance enhancing drugs." I am beginning to lust after those every fourth weeks off when I feel my old "normal" self for the most part. My doctor has talked about cutting out the middle, gemcitabine-only dose and going to an every-other-week regimen -- giving me two such weeks each cycle -- but doesn't want to do so yet since we are seeing such good results. My CA 19-9 level has continued to drop and is now in the high "normal" range at 37. The abdominal pain I do have generally occurs a day or so after a chemo session and lasts for a few days, hinting that it is due to inflammation occurring at the sites of tumor necrosis (die tumor cells, die!!) rather than "cancer" pain. As crummy as I feel at times, I have to agree that staying the course is the best option; I can't argue with success.

So, am I stronger for all of this? Physically, no, even though I try to exercise by walking, running or biking 5-6 days each week. Emotionally, mentally, spiritually? Maybe. I'm not even sure if stronger is the right word. Have I been changed by the experience? Most certainly, especially my perspective on so many things. It has been easy to discard lots of "stuff," the trivia that rule too much of all our lives, and focus on what's important -- love, relationships, the need for laughter in our lives, the need to find something good in each and every day and to be thankful for it. And in saying this I don't mean to discount the work I do and have done as a teacher, or the things that have to be done to keep food on the table and a roof over my head. It's just that the significance of so many every day things has changed. Have I enjoyed some increased philosophical clarity about life and love then? I don't know if it's clarity as much as a sorting out of the things, people and events that make up my life. I will not pretend to have any grand insights into or revelations about living life, about facing demons, about death and dying (subjects that still are scary for me). One thing that has become very clear to me is that none of us really have control over many of the things that happen in our lives, even though we may take our plans for our lives as a matter of fact. In the end, stuff will happen over which we have little say. Our only hope lies in our attitudes and the way we react to whatever life throws at us. A corollary to that is that I have learned how much I am loved, and how important knowing that is to my well-being, to my attitude about life. If I can share any insight it is that we all need to be open to love, to recognize it in others, and to reciprocate. Ultimately, it's what enables me to continue on this journey. My thanks, as always, for the continued prayers and the support so many of you provide in so many ways. God bless . . .

Peace,

Don

Shrinkage!!

This past weekend, Jane and I took some much needed time away from work and cancer and our normal routines and headed to Pacific Grove for four days. Jessie, Luke and Violet joined us for part of the time, time we spent walking, watching a parade -- it was Good Old Days weekend in PG -- eating good food, taking in a high school mountain bike race, and just generally enjoying each other and every warm and sunny day. I spent one morning with Luke paddling the glassy, crystal clear and cold water of Monterey bay, getting close-up looks at otters, several with new pups, seals and sea lions, an assortment of sea birds and other denizens of the offshore kelp forest. We paddled "sit-on-top" boats on a day so warm there was no need for wet suits. However, that did mean sitting in a puddle of that cool bay water with nothing but a thin layer of nylon between it and me for two and a half hours. You might ask, is this the connection with the title? Sorry Seinfeld fans, but the title's reference is to something more significant.

During our time away, I was able to put thoughts of cancer on a shelf and really just enjoy what each and every day brought. It's not that I haven't been able to do that at times before, but there have always been daily reminders of the cancer growing within me. It helped this time that I have been feeling as good physically this past week or so as I have in six months. I have had little cancer pain, the viral infection that dogged me for three weeks had finally faded away, and the side-effects of chemo were only a shadow of what they have been during treatments. Arriving home Monday night, while nice in so many ways, did require that I face the reality of my cancer again. Chemo treatments, cycle five, would begin again Wednesday, and with them the side effects that I've learned to live with every three weeks out of four. In addition,Tuesday morning I was scheduled for a CT scan, and while my body had been telling me that there had been changes for the good, the anxiety about what the scan would show was inescapable; it would have to sit there in the background until I saw my doctor on Wednesday and learned the results. This is where the title comes in. The scan showed what my body has been telling me. The tumors in my liver have decreased in size by about 20%. The tumor in my pancreas appears unchanged from my last scan when there was evidence of necrosis. The bottom line is that it is not growing. In addition, my CA 19-9 levels continue their downward trend with a new low of 40 units (I started at 117 before treatment), indicating reduced tumor activity. My blood work and other tests are all OK, showing normal liver and kidney function and blood counts. All of this is good news! It does make it easier to move forward and update goals; it replenishes the reservoir of hope that can get drawn down fairly well at times. It also makes it easier to deal with the side effects of the chemotherapy since it and the prayers and support of so many are clearly working.

Good things, then, have happened and battles won in my fight against cancer, but the enemy is still there, potent and unpredictable. While chemotherapy is a primary weapon against my tumors, I don't discount the significance of the prayers and positive support I've received from so many people in my life. Please keep them coming; I do believe they are part and parcel of my healing. Finally, a number of you have asked how long chemotherapy will last. The best answer is that it will continue as long as it shows positive results. Assuming (and hoping) that it does, I should be able to take a temporary break from it at some point 6 months or so down the road. But, I've learned not to make assumptions about anything related to this disease. It is important for me to celebrate victories, to maintain a positive attitude, but also to continue to take things one step at a time. I'm reminded of that each time I stop in at the California Cancer Center in Greenbrae for acupuncture. On the staircase landing there is a ladder made out of driftwood that says just that, one word per rung. So, I do just that, trying always to find something to enjoy and give thanks for each and every additional day I have been given on this planet -- and, you know, it's relatively easy to do, even on the darkest of days.

Peace,

Don

Cycle four, a done deal

This past Wednesday, I completed the third and final infusion of my fourth chemo cycle. It was a fairly uncomfortable day since I continued to be dogged by the bug I picked up two plus weeks earlier, a bug that turned into bronchitis and resisted a round of antibiotics. In fact, it is still with me and has made dealing with this last cycle more difficult than it needed to be. Trying to always find silver linings though, it has been something of a distraction and has taken the focus off of my cancer to a degree. It does seem to be finally on the wane, and I hope to be done with my spewing and hacking in time to enjoy four days in Pacific Grove next weekend. I would like to get back to running as well. I've spent a lot of the last nearly three weeks resting and "pushing fluids" as well as producing them. I only started walking again for exercise within the last few days. I do need to get some running in since I sent my Dipsea application in last weekend. I know it may sound crazy to those of you who know the race, but it's an important goal for me. I figure that if I'm healthy enough to run and finish the race, which will be June 8, two days shy of six months since my diagnosis and nearly nine months since symptoms first showed up, it will be a good sign and hopefully portend good things in the future.

The viral infection aside, there have been few changes in my health status since I last wrote two weeks ago. Chemo side effects continue to take a weekly and cumulative toll on my body (the loss of body hair a recent observation!), but so far there have been no significant effects on blood counts, or liver and kidney function. That means that I can continue with the therapy, and as uncomfortable as it can make me feel at times, it beats the alternative as long as it continues to produce positive results (it and all that other good stuff people have been sending my way). I'll learn more about what's up with the tumors in my pancreas and liver in ten days after a CT scan and visit with my doctor. Until then, I will continue to stay focused on the positive responses it appears I've had to the therapy and enjoy a rest week -- other than an acupuncture session, which I find pleasant, no blood tests, scans, doctor's appointments or IVs.

Even though my health status remains more or less unchanged, this past week, I did make official and public a change in my future work status. While I have been able to function to a degree as Marin Catholic's principal these past few months, it's largely been due to the extra work so many in the community have been willing to add to their regular loads that's made it possible. But, this very part-time approach on my part to leadership is not what the community needs if we are to continue the success we've enjoyed on so many levels these past few years. Since I can offer no more than that, and in both my best interests and those of the school, I will not continue as the school's principal next year. Even though I've looked forward to retiring at some point, to finally graduating from high school for once and all, it won't be easy leaving a job that I've enjoyed, especially given the circumstances. I do hope to stay connected and know that the door is open to continuing as a member of the staff in a part-time capacity. I appreciate that and hope that my health is such that I will be able to make the most of any opportunities to continue to be a productive member of the community. On the plus side, I do hope to get some "off-season" traveling in and enjoy more time with my family especially that little viral incubator, Violet.

So, life moves on, taking us in directions we hadn't expected. Thank-you all who have and continue to provide support in so many ways, from prayers to cookies to Saturday morning walk and talks. It all helps in ways you may never know.

Peace,

Don

Of snot-nosed babies and chemo

Last Friday, I broke a rule that I've been otherwise good about following since beginning chemotherapy -- stay away from sick people. Violet, and her mom and dad of course, visited in the afternoon and stayed for dinner. She has always been good therapy for me, and the two of us have something of a routine going. When she sees me, she crawls to my legs, pulls herself up to a standing position, turns her back to me and reaches up with one of her tiny hands. My Pavlovian response is to provide a finger for that little hand to grip, and off we go, walking wherever she wants. If it's outside, it could be anywhere. At our house, she loves going down then back up our carpeted stairs or running on tippy-toes through a long hallway. Even though she arrived coughing, drooling and blowing those snot-bubbles from her nose that only little ones can do, I violated my "sick person" rule -- what's an Oompah (my granddad moniker) to do? We played for several hours, and there was no way to avoid some of the viscous fluids she was producing. So it should have been no surprise when, a couple of days later, I started to show similar symptoms, minus the snot-bubbles of course. I thought I had it pretty much under control by yesterday, though, when I began the fourth cycle of chemotherapy. Unfortunately, as the chemo treatment went along -- a long day yesterday with both drugs following an anti-nausea med -- I got stuffier and stuffier; one of the side effects I've noticed since the very beginning is that I produce more mucus and saliva. Add that to the cold symptoms and it made a long day in the chair seem even longer. So, lesson learned -- no more sick people!! Either that, or I find a safer way to contact them -- for some reason an image of Frank Drebin (Leslie Nielson) in "The Naked Gun" just popped into my brain; I'll say no more.

Even though I'm feeling pretty "punky" today as my Mom might have said, the time spent in chemotherapy continues to turn dividends. Prior to my infusion, I met with my doctor, Margaret Tempero, for my monthly evaluation. All of my blood work has been positive. My liver enzymes and other measures are those of an otherwise healthy 61-year old; my CA-19-9 levels continue to remain low with the most recent dropping to 47 (from 117 before therapy began). Reduced levels of that protein indicate reduced tumor activity. She also felt that the pain in my side that has worried me for the past few weeks is not "cancer pain." She examined my abdomen, and found things to be normal; I had no pain when she palpated my liver and other abdominal organs. Her take on my last CT scan was that the changes in my liver tumors were trivial. Her conclusion is that I am progressing well with the treatment.

So, the news is encouraging and has helped me put aside some of the doubt that has been too much of a focus the past few weeks. I know I'm not even close to being out of the woods, but knowing that a path exists that will keep me moving in a positive direction keeps me hopeful. Plus, it's the first day of Spring, and Easter is just around the corner. How can I be filled with anything other than hope? My thanks again to all who continue to pray for and provide support to me and my family as we make this journey we'd just as soon avoid. Have a good holiday and best wishes to one and all.

Peace,

Don

Another cycle in the books

Today, March 10, I have a relatively inauspicious anniversary to celebrate -- and I use the word celebrate rather ambivalently. Three months ago, I received the phone call that turned my world upside down. Against a background of doctor talk, I heard "significant changes," "mass in your pancreas," and "spread to your liver." In many ways, this has been the longest three months of my life. If I were Dunbar, a character in the novel "Catch-22" who decided to live as long as possible by making time pass as slowly as possible, treasuring boredom and discomfort, this would be a good thing. However, I think I would trade a quicker passing of time for some certainty, or at least less uncertainty, about how much I had left on this lovely planet of ours. The good news is that three months have passed since I was told that I had an advanced case of cancer, and I'm not dying from it. The chemotherapy, while producing mixed results to date, as well as support from so many people on so many levels, has given me hope where little appeared on December 10. I continue to have good days -- this past Saturday was spent with family at a yard sale, laughing, chatting, playing with my grand daughter (what great therapy) -- and days that are harder to get through. Yesterday, even though I was able to get out with Jane and enjoy the beautiful day that it was, walking the Tiburon bike path and stopping for an early dinner at Pancho Villa's (yes, my appetite has improved), it was difficult to not focus on the cancer and my mortality.

This week is a welcome "rest" week from chemo. Last Wednesday was a fairly long one at the infusion center, four-plus hours, to finish the third and last infusion of the third chemotherapy cycle. It was a two-drug day, preceded by some anti-nausea meds given intravenously, so I had to spend a longer amount of time in the chair. There was benefit to doing so, though, since I really haven't experienced much nausea at all this time around. Other than the side effects of the two drugs, I feel pretty well physically. I continue to have some pain, which I haven't been managing too effectively at times. That leads to too much focus on the pain and what it might mean. Are the tumors growing? Are the drugs working and causing inflammation at the tumor sites? Is something else going on? That, in turn, leads to projecting outcomes with limited available information -- an exercise in frustration and, to a degree, futility. So, I continue to learn how to live life with cancer, maximizing opportunities for personal growth and connections to family and friends and the resulting enjoyment of life, while understanding that I can't be and won't be "up" all the time.

I read an article about Angie Evans, a woman in the trials that led to the recent approval by the FDA for Avastin, one of the drugs I'm receiving, for the treatment of metastatic breast cancer. Her philosophy was summed up in the quote, "Life isn't about waiting for the storm to pass...It's about learning to dance in the rain!" I'm doing my best to become the Gene Kelly of cancer survivors.

Peace,

Don

How am I?

Today is a chemotherapy day, and I'm writing from my chair in the infusion center. I thought writing while receiving chemotherapy might serve two purposes -- make use of the time I have to spend in this chair and also add a different perspective to what I write. Today I'm very aware of the medicinal smells, the tone and tenor of conversations between nurses and patients, the way other patients manage their situations. Each person is dealing with a different cancer at a different stage in its development, and each deals with their time in the chair differently. Some sleep, some chat with friends, some read, some sit quietly and seemingly introspectively. I know how easy it is to turn inward and reflect upon my situation, not just here in the chair, but upon the disease and its effects that put me here.

I am frequently asked some version of, "How are you?" Usually the question is a part of a greeting, and it's a question all of us ask one another regularly when we meet. The nurses ask the question before each chemo session, but ask it in a slightly different way, "How are you feeling today?" They are quick to note any hesitation in answering, which prompts follow up with other more specific, clinical questions -- "Are you having any pain today?" "How did you feel after last week's treatment?" "Any nausea?" There is clearly purpose in the questions they ask.

I think there is also purpose in the "how are you question" asked by virtually everyone I meet, whether it's reassurance that I am OK or their way of communicating concern. I generally answer with an "ok" or "fine" without much elaboration. The real answer, however, is so much more complicated than that and has physical, intellectual, emotional, and spiritual dimensions. Physically, I feel better than I have in months. My appetite has improved; I've gained back much of the weight I lost; I'm running and walking; but pain still persists -- it's manageable but a constant reminder that an aggressive cancer has established itself in me. Intellectually, I understand that and also that I have an aggressive doctor who is treating me. I understand that everything that can be done to improve my survivability will be done. However, when it comes to translating knowing to feeling, it's a different story. Emotionally, I've been on a rollercoaster and last week experienced more dips -- some small, others those 90-foot drop screamers -- than high points.

It began with my doctor's appointment where I learned of the mixed results of my treatment up to then. As I indicated when I wrote last week, most of the results have been good. However, my focus was drawn to the fact that the tumors in my liver had not shown a positive response to the chemotherapy and had, in fact, shown marginal growth. Those results, even though not unexpected, were disappointing. I spent the better part of last week focusing on that disappointment, turning it into a funk, a depression that regularly sapped my energy and distracted me. The feeling was not unlike the images of the storm that TV weather personalities were showing last week -- a spiraling low pressure system that was drawing energy from surrounding areas of higher pressure. It was difficult not to think about my cancer, about dying from it, and feeling a profound sadness about all that I would lose were that to happen. Tears flowed frequently; it took so much energy to try to counter it and left me weary. I don’t mean to make it sound like I was a tortured soul each and every minute of every day. Far from it; walks and talks with friends, watching movies cuddled on the couch with Jane, playing with Violet, my granddaughter, a night out for dinner with Jane, Matt, Jess, Lucas and Violet, and more good things came my way. Thoughts about the cancer and loss just seemed to intrude more and stay longer than in the past.

Things are better today. Yesterday while riding my bike home from work, feeling some self-pity, I was passed on a long uphill by several members of the Marin Catholic mountain bike club. Had the trail been dry, I would literally have been left in their dust. Their youthful enthusiasm for riding and for life seemed to flick a switch inside of me. At the top of the hill, a place called Five Corners, I stopped to sit in the sun and take everything in – the smells, the early spring wildflowers, the oaks, the appearance and reappearance of the young riders and their coaches as they did hill repeats. Somehow, something had changed. The sense of loss I had been feeling so deeply was replaced by a sense of “having.” I have been and continue to be blessed by a loving family and friends. Jane and I have been husband and wife and best friends for over 38 years. We have raised two great kids who remain close to us as adults. We have a granddaughter who is joy incarnate. And we have a community of friends and family whose support is unquestioned – Jane refers to them as our angels. In so many ways, my life could not be better – I just need to remember and hold on to that as a counterbalance to the darker thoughts and the feelings which attend them. And those will return; it’s an expected part of what is now normal for me.

It’s getting toward the end of my session and I should be freed from the tubes and my IV shortly. I’ve begun to develop “anticipatory” nausea the last couple of trips over here and tend to be queasy throughout the process, so I’ll be happy to get away from the sights and smells of the hospital and get out in the air.

So, before I go, how am I? I’m doing my best to fight my cancer. I have good days and not so good days. It’s a difficult cross to bear, but one made lighter by family, friends and faith. I know I am loved.

Peace,

Don