Don's Progress

A Final Entry

2009-06-10T23:45:00.000-07:00

Ten days before Don died, I (brother Bob) took him up to some favorite lakes above his Fairfax home. This would be his last walk outside. I asked him how he was doing. He could have gone the route of saying how unfair it was or how scared he was or how much it all sucked, but instead he smiled and said ‘I have no regrets; life has been sweet’. I'll never get close to touching Don’s writing in his blog, but based on our last conversations, I tried to imagine what his final entry might look like. Here's what I think he'd have to say to his family and friends:

"I’m ok. Actually, I’m great. The views are unbelievable. Better than anything google earth could provide . . . and no cell phones! There’s a slight breeze but I can’t describe the co-mingling of scents yet; it’s a mix of spring mornings in Yosemite, cottonwoods along the Yukon and San Juan rivers, Costa Rican flowers, the salty smell of Stinson Beach near the top of the Dipsea course, my mom’s kitchen, and my wife’s shampoo softened hair. The trail is generally level through towering trees and wide open meadows, like one of my favorites near Lake Lagunitas. Importantly my legs don’t ache, my lungs are clear, and I don’t have to wear that nuisance of a neck brace. Jane there really aren’t too many switchbacks and definitely no ziplines, garage sales are unending, and you can dicker all you want. And there are beaches to visit in every direction. Matt, there are no fishing limits or seasons and the man doesn’t tax you here. Jessie, you can dance whenever you want, for as long as you want. And Violet, my granddaughter, playgrounds are adult free zones! My brothers and sisters should know that the Giants always win. Tom, interestingly, there are still schools here but summer vacations are 11 and half months long and only administrators have to attend.

Finally, friends and family, share your hearts with the world and don’t let your grief interfere too much with living, and laughing, and loving as if there is no tomorrow. Please take one of Jena’s 1001 cranes and pass it on to someone in need.

I’m ok."

Donald Michael Ritchie (1 November 1946-1 June 2009)

More To Come

2009-06-09T19:26:00.000-07:00

Don's brother Bob spoke at Don's services and part of what he talked about was what Don's blog would be from Heaven. Bob is taking a few well deserved days off at Tahoe, but plans on posting it very soon. Stay tuned....

Services

2009-06-04T13:10:00.000-07:00

There will be a celebration of Don's life and a Vigil at St. Rita's Church in Fairfax on Friday, June 5th at 7:30 pm and a Mass of the Resurrection on Saturday, June 6th at 10:00 am. Again, thanks to all of our friends for your love and support, it means so much to all of us. Jane

Peace...peace at last

2009-06-01T07:44:00.000-07:00

Don found peace last night at 1:41 am. I know the exact time, because I was putting the microwave timer on every hour to make sure I was awake to give him his medication so he did not once again become painful. The medication also eased his labored breathing. Being very fatigued, I could not set the timer for some reason, so I decided to let it go and hoped that I would awaken on my own. I returned to the couch next to his hospital bed, and listened for his breathing. Very soon, I heard him take two deep breaths and then no more. At that exact moment, the timer went off. I had asked Don to send me a sign when he passed and I knew this was it. He had told me the day before that I was not to worry, that he was going to be OK and that all he wanted was peace. What transpired next was even more incredible. My sister-in-law had brought a rosary for Don to use that belonged to her little girl, Kaylee. Kaylee had received it from our niece, Amy, who had just brought it from a pilgrimage in Spain, El Camino de Santiago. We had placed it on the side rail of his bed. Most recently, his brother Bob had placed it around Don's right wrist, saying: "We might as well pull out all of the stops." Sitting at his bedside, just after his last breath was taken, everything was still. Suddenly, I saw a movement beneath the covers. It was his right hand being lifted and placed over his heart. For me, I know that the man who has loved me and that I have loved for close to 45 years, was letting me know that he will love me for all eternity and that "all is well." Peace and our thanks, Jane...

The Final Stretch

2009-05-31T15:41:00.000-07:00

Our beloved Don is now on the final stretch of his journey. He fell into a comatose state about 1 am this morning and is resting very peacefully. He is surrounded by his family and friends, and the love is palpable. Between the tears and laughter, we are sharing some of the great stories of his childhood, teaching career, river rafting trips, zip lining (oops, that was me!) and more. We are hoping that his passing is a gentle one. I will keep you informed of his condition and of the plans for his services once known. Please keep him and his loved ones in your thoughts and prayers as this is a very difficult time for us. Gratefully, Jane.

Transition to Hospice

2009-05-26T12:58:00.000-07:00

My condition is slowly worsening, and I have now decided to go with Hospice rather than take a chance on another round of a chemo that holds no promises. My family and friends bring me much comfort and joy, so I am spending my days with short visits, laughter, and receiving hugs. Once again, my brother Bob and wife are helping with this posting, so it probably does not sound much like me. It took them forever to remember my password...and I was no help to them at all! To all of you who have been so diligent in following my journey, I want to say thank you. My family is also very grateful for your support and well wishes. I am, however, full of surprises. I rediscovered the delights of Hostess chocolate cupcakes and I look forward to the next! Peace, Don.

Update, early May

2009-05-08T12:40:00.000-07:00

It's been just two weeks since I last wrote, correction, since my brother last wrote; I will not take full responsibility for anything in that last post. I am slowly getting stronger, and am enjoying family and friends when I have the opportunity. Opportunities have been limited by the weather, schedules, and fatigue level. I have difficulty concentrating and focusing at times, somewhat due to the cancer and the medications used to fight the symptoms. My pain level is mostly under control although finding a balance between pain relief and a clear head is sometimes a challenge. More often then not, I am enjoying the changing weather, my family (especially Violet when I get the chance), visits from friends, gifts of meals well prepared, cards, and other expressions of support and love. My wife helped me with this entry, so I again will not take full responsibility for anything in this post! As always, thank you to one and all for that love and support. It not only means a lot to me, but to my family as well.

A long 17 days

2009-04-21T09:39:00.000-07:00

A long 17 days ago I entered Marin General Hospital for a repeat performance! Pneumonia and pulmonary emboli were my leads. A little more than the standard fare, which includes nausea and neck and shoulder pain. I don't remember all of those days and that's why my brother, Bob, is handling this entry. I do recall telling him that he was the best brother a brother could have, but he's editing this, so don't believe all of it. Bottom line is I'm home again (returned in the heat of the day, Monday April 20) and will spend time updating you on my progress after I'm settled into a routine. For what it's worth, my brother says I look good and stronger every day. Enjoy this beautiful weather and, of course, Peace.

It's a blur

2009-02-24T13:21:00.001-08:00

When I wrote last, I was pretty jazzed about being home and away from hospitals. I've been home for three plus weeks as of today, and while I have no desire to return to a hospital, the days have pretty much blended into one another. Routines have been established, most revolving around times for the various medications I still need to take, exercises prescribed by the physical and occupational therapists I've worked with, and the daily NY Times crossword puzzle. Generally, exercising body and mind consumes a couple of hours each morning and keeps me busy. A big thank-you to George Frazier and the Tamalpa Runners for getting an exercycle for me. I'm on it for 30 minutes or so each day, and last week I was able to ride with the Tour of California guys! It's great what a TV, a recumbant exercise bike and an active an imagination can produce.

The rest of my days are spent visiting, napping, watching an occasional movie. I have been able to get out for short walks when the weather and energy levels have permitted. Even so, it's difficult not feeling confined, of being under a "house arrest" of sorts. While I'm able to take care of myself during the day, I can't function independently away from the house; even at home there are limits on what I'm able to do. My brace goes on at 6AM when Jane leaves for work, and needs to stay on until either Jane gets home or someone visits (someone who feels comfortable helping me in and out of the brace -- big thank-yous to my sisters, Donna and Diane). While it allows me to be up and mobile, it is confining in the truest sense of the word. I makes negotiating stairs, reading, and other common activities difficult. Hopefully, I'll be out of it in another month or so.

I continue to be asked how I'm doing. For the most part, and understanding the limitations I've described above, I'm OK. As I've tapered my steroid meds, some of the pain has returned, but it's no where near where it was before going to the hospital. Getting off the "roids" may also be somewhat responsible for the kind of flat feeling I've had for most of the last two weeks; I'm sure there's more at play regarding my emotional health, but the tapering of the steroid dosage could be part of it. My hands continue to be weak, limiting some of the things I can do. It's amazing how we can take so much for granted -- the ability to take a cap off of a bottle, for example -- until we lose the ability to do it any longer. Those limitations are probably another factor in how I'm doing emotionally.

Blood pressure is somewhat under control; I've been able to back off on some of the meds I was taking because BPs were actually getting too low. They are still bouncing around a bit, but within a more normal range. I'll find out more about how I'm doing regarding chemo tomorrow -- blood was drawn today in preparation for the start of cycle two tomorrow (Thursday). My last tests showed good liver and kidney function two weeks ago and small changes in blood counts. A CT scan done three weeks ago showed some growth, not unexpected, in my tumors, so I'm kind of back at square one as far as the cancer goes. Hopefully, the next scan, after two or more complete cycles of abraxane will show stability or, better yet, some shrinkage of the tumors. Ideally, it would also show some healing going on in my spine; the last CT scan was inconclusive in that regard. And so,the waiting game continues. And while it does, I'll do my best to beat the odds, as great as they are. I will put in the hard work necessary to do so, as difficult as it can be a times, and will continue to be thankful for the support I get from so many.

Peace,

Don

Home!

2009-02-01T14:44:00.000-08:00

Home, what an absolutely delicious word, especially when the previous three-plus weeks have been spent in hospitals. This past Friday I was discharged from Kentfield Rehab, and returned home for the first time since January 7. I had been admitted early that morning to Marin General Hospital with intractable pain due to the compression of spinal nerves by a collapsed vertebra in my upper back. As I've written earlier, that was due to the metastasis of my cancer to my spine. That tumor was treated with 10 days of radiation which caused the tumor to shrink. This was definitely a good thing, but it didn't come without some cost. As the tumor grew smaller, there was less material holding the bone together, and it began a slow collapse compressing nerves and producing pain and other symptoms.

Since then a good deal of water has passed under the bridge. Without going into too much detail, pain management has been successful; it does require medication on a very regular basis -- I'm taking methadone and a second drug that specifically treats nerve pain. In addition, I'm being treated for shingles -- I broke out with blisters just this past week -- which would help to explain some of the pain as well. The bottom line is that pain levels are manageable, and at times zero.

The compression of nerves has also caused weakness and some loss of function in my hands, in particular my right (and, yes, I am right-handed). However, I am getting a bit stronger and have learned some adaptive skills that are enabling me to function fairly independently around the house; time will tell if I will get some or all of my function back. I do need to be in a neck and back brace any time I'm out of bed, if even to make a trip to the bathroom, but with it on, I'm fairly mobile. I will probably need it for another five to six weeks to be sure that the bone heals without any further fracturing. I am learning to accept the fact that I am pretty much dependent on others though, and for fairly simple things in some cases -- just getting the brace on requires someone else to get me in it.

All in all though, and given the complications of the past two months, I feel good both physically and emotionally, better than I have since before Thanksgiving. I was able to begin chemotherapy this past week -- a new C1D1 -- with a new drug, abraxane, which has shown promise in treating pancreatic cancer. Therapy will continue on a once per week, three weeks out of four, schedule. Hopefully, I'll see the same sort of beneficial results several other patients of Dr. Tempero have seen since beginning therapy. One additional plus with chemo, is that I am able to do it here in Marin at California Cancer Care thanks to the cooperation between UCSF and Dr. Peter Eisenberg. That cooperation and the support I've received from so many professionals, friends and family have been hallmarks of my treatment since early January. The staffs at both Marin General and Kentfield were wonderful. My recovery has been due in no small part because of their work with me. And, I can't say enough about the continuing support family and friends have offered me, in particular that of my wife, Jane. I am a lucky man and feel loved. Thank-you to all who continue to remember me in thoughts, prayers, good wishes; they are an important part of healing.

Peace,

Don

Another turn in the road

2009-01-20T18:07:00.000-08:00

Two weeks ago I was admitted to Marin General Hospital to deal with intractable pain associated with the metastasis to my spine. Five days ago I was transferred to Kentfield Rehab Hospital for further recovery. This latest turn in the road is due to compression fractures after the tumor was radiated. The radiation is complete and I am mending and the next goal is restarting chemotherapy soon. I've had a wonderful team of physicians, family, friends, nurses, and therapists helping me to achieve that goal. Unfortunately, some of the effects of the fractures have left me with weakness in my hands, so updates may be brief for awhile. As a matter of fact, my brother (Bob) is typing this right now and my wife is dictating as well. I am not responsible for anything you read after this last sentence . . . please continue your prayers and support; they mean so much to all of us.
Peace,
Don

Shattered

2008-12-31T17:47:00.000-08:00

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

2008-12-20T11:16:00.000-08:00

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 . . .

2008-12-03T15:10:00.000-08:00

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

2008-11-30T15:20:00.000-08:00

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

2008-11-03T11:13:00.001-08:00

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

2008-10-27T15:34:00.000-07:00

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 . . .

2008-10-04T10:45:00.000-07:00

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."

2008-09-22T09:34:00.000-07:00

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

2008-09-14T10:30:00.000-07:00

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."

2008-09-07T11:05:00.000-07:00

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

2008-08-24T10:34:00.000-07:00

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

2008-08-08T11:00:00.000-07:00

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 . . .

2008-07-26T12:47:00.000-07:00

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

2008-07-12T09:46:00.001-07:00

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

2008-07-05T13:57:00.000-07:00

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 . . ."

2008-06-27T11:30:00.000-07:00

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

2008-06-11T21:18:00.000-07:00

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

2008-06-06T14:18:00.000-07:00

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

2008-05-29T09:34:00.000-07:00

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!

2008-05-16T14:15:00.000-07:00

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 . . ."

2008-04-24T11:20:00.000-07:00

" . . . 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!!

2008-04-17T10:39:00.000-07:00

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

2008-04-05T15:04:00.000-07:00

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

2008-03-20T10:15:00.000-07:00

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

2008-03-08T08:55:00.002-08:00

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?

2008-02-27T12:22:00.000-08:00

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

A mixed bag

2008-02-21T09:07:00.000-08:00

Yesterday, all my troubles . . . After a good week-plus off of chemo, a week during which I felt reasonably healthy -- I even ran in a local Tamalpa club race -- anxiety started to build as I approached my first CT scan since my diagnosis. The anxiety was largely due to not "knowing," something that has been and will continue to be one of the challenges I must deal with regularly. There are times when any news, good or bad, is better than no news at all. Although, another piece of the anxiety puzzle lies in the "waiting for the other shoe to drop" feeling that lurks behind the scenes, now and then making itself felt. If I sound a bit ambiguous, you are getting an insight into how my life works these days -- kind of, "I want to know, but . . ."

Yesterday, I met my doctor and received the results of Tuesday's CT scan and other tests. In short, after two cycles of chemotherapy, the results are "mixed" -- something of a good news-bad news scenario, but with most of the emphasis on the good. The good stuff: my CA 19-9 levels are still down, which means less tumor activity; pain levels are down and manageable without narcotics; my appetite is getting better which explains the return of some of the weight I had lost (In Jane's eyes, I've gone from gaunt and emaciated to just skinny); I'm able to enjoy life without restrictions -- well, almost. Jane doesn't want me riding my bike, crashing and bleeding out due to my reduced blood-clotting ability. The fact that I recently tripped over a waste-paper basket at home and bled profusely from a scraped shin hasn't helped my case very much. As far as the results of the CT scan go, the scan showed that the primary tumor in my pancreas appears to be responding to the gemcitabine and shows necrosis (parts of it are dying!); it also showed no further metastases, something I was concerned about. On the other side of the equation, the tumors in my liver do not seem to be responding to the chemotherapy as well as the tumor in my pancreas. While all still remain small, some have shown growth; however, all my liver tests are normal which indicates that they are not interfering with liver function. These results, while not what I had hoped for in a best-case scenario, simply mean that I've had to take the next step in the program. I knew from the start that a second drug would be added to my chemotherapy regimen as soon as there was evidence that the gemcitabine alone wasn't proving effective enough. While I had hoped that it would have been later rather than sooner, I did receive my first treatment with bevacizumab (Avastin) yesterday -- C3D1, for those keeping track. This is the experimental part of the trial. Avastin is an "angiogenesis suppressor," a bioengineered compound that interferes with the production of new blood vessels by tumor cells (and other cells in the body -- hence some side effects including increased blood pressure and nose bleeds). The result is that the tumors cannot get the oxygen and nutrients they need and the tumor cells die. It has been shown to be successful in the treatment of colon, lung and other cancers, and hopefully will be as successful in some people with pancreactic cancer, including me.

It is being given in addition to the gemcitabine, so my time in a chair in the infusion center has stretched out to 3+ hours. As oxymoronic as it sounds, sitting in a recliner alternatively reading, listening to music, praying, napping, induced a weariness in me that I haven't felt in quite a while. Part of it, I'm sure, was due to the release of the "not knowing" anxiety I had carried the past few days, and part was knowing where I stand in respect to my disease. Even though I knew and expected to be right where I am with my treatment at some point, the sobering reality of it weighs heavily on mind and spirit and rekindles the uncertainty that plagues me at times. And even that feeling is to be expected, a part of the roller coaster of emotion that I and those close to me will have to ride indefinitely.

I continue to be hopeful; there is really no reason not to at this point in my treatment since most of the results are good, and I need to keep reminding myself of that. I did meet a parent yesterday of two of my ex-students. He was at the infusion center receiving treatment for a cancer that was first diagnosed over five years ago. He has been in several trials at UCSF, each time receiving treatments that would shrink the tumors only to see them eventually resist the therapy. His attitude and spirit were inspiring. He has never lost hope, and I need to follow his example. As always, the prayers and support of so many will help me continue to play that one string I have -- an attitude of hope and optimism.

Peace,

Don

PS: For you cartoon trivia fans, the fast-talking mouse I referred to in my last blog was a Merry Melodies character named Sniffles -- he last appeared in a cartoon in 1946, the year I was born.

C2D15 - the second chemo cycle ends

2008-02-11T09:40:00.000-08:00

Friday, I completed the third and final infusion of my second cycle of chemotherapy. I now get a week of rest with nothing scheduled except an acupuncture session this Tuesday. Given the accumulating effects of the chemo treatments, I do need a week off. The nausea that has followed each treatment reached new highs this weekend, starting earlier, becoming more moderate than mild, and being more persistent -- I woke this morning with that feeling some get driving from Mill Valley to Stinson Beach, just a bit of residual queasiness. But, and back to the war/battle metaphor, it's collateral damage that I need to endure in order to treat this cancer successfully. And so far, (knock on wood, say another prayer, or do whatever you do to not nix a good thing) it seems that the treatments have been successful. Other than the side-effects of the chemo which I can mitigate to a degree with anti-nausea meds, I feel well. My pain is just a fraction of what it was at its worse; CA 19-9 levels are still down. Unlike our current Commander-in-Chief in 2003 however, I am not about to pronounce hostilities over. I know this fight is one that must be ongoing. I'll know more about what has been going on inside of me some time next week. I have a CT scan scheduled for Tuesday, Feb. 19 and see my doctor the next day. I'll also have the results of an additional CA 19-9 test from blood drawn this past Friday. I'm hoping the scan shows what I feel is happening, that the tumors are shrinking, that cancer cells have been dying by the droves.

So, last week was a good one. Having warm and sunny days to enjoy was certainly part of it. I was able to get outside every day and walk or run -- yes I've started running, well actually jogging, again. I've talked about the mind-soul-body connection before and want to emphasize again its reality. Feeling well enough to get out and exercise in weather conducive to doing so produces additional good feelings -- it's essentially a positive-feedback loop. Feeling good allows me to do more things that make me feel good which in turn . . . you get the picture. Prayer, visualization, and meditation are all made easier and they feed into that loop as well -- although with a brain that is often operating in something of a stream-of-consciousness mode, meditation isn't that easy for me yet. Some of you might remember a Looney Tunes cartoon character, a little mouse (no, not Speedy Gonzales) that talked a mile a minute, commenting in a rapid-fire and non-stop way about everything and anything; that's kind of how my brain works at times. My Mom called it "day-dreaming" when I was younger; I thought it an interesting way of passing time, generally in class -- as a student, not a teacher! But, I've managed to digress and, perhaps, demonstrate the point I was making. Anyway, the connection between mind, body and spirit is real, and I firmly believe healing is dependent on its care and maintenance.

As always, my appreciation for the continued prayers and thoughts as the fight goes on.

Peace,

Don

C2D8

2008-02-04T16:29:00.000-08:00

Last Friday was my second chemo treatment of the second cycle, and it went as expected. I spent the time doing a bit of visualization/meditation at the start of the infusion, then listened to music, read, and did crossword puzzles. I've gotten in the habit of starting each music session with "Wishlist" by Pearl Jam, amending some of the lyrics to describe my own wishes -- for those of you who have heard me sing, no worries, I sing along in my head, not out loud. While the chemo treatments themselves are no big deal, the side effects, even though I know what to expect, still present a challenge. The nausea started a little earlier than usual, that night in fact, and the typical fatigue followed the next day. The pain in my abdomen, while much less than before, is still there but more localized; I like to think that some of it is due to "tumor necrosis," the dying of cancer cells. What pain I have is manageable, though, and it doesn't keep me from doing anything -- I still get to put out the garbage, take the car for servicing, play with my grand-daughter, Violet, and generally enjoy life.

Today was a good day to be alive -- actually, every day I get up and acknowledge the fact that I'm not dying are good days for the most part, but this one had something recent days have lacked, a clear, cloudless sky and a warm sun. After an appointment and some chores took most of the morning, I was able to go for a walk, and unlike yesterday's PanCan walk, which was a good one in it's own right, felt the sun on my face and back (and legs -- I wore shorts!). Ospreys were fishing over Bon Tempe Lake, the first wildflowers, Milkmaids and Hound's Tongue, were in bloom. Spring, season of renewal, is clearly around the corner. And I needed to physically feel that sense of newness, of promise. I've learned that it's one thing to see things rationally, to understand what is happening inside of me, to deal with my treatment and the benefits and side effects it brings, and quite another to stay in this game mentally and emotionally. I've spoken of the physical fatigue that accompanies chemotherapy, but there is also another level of fatigue, emotional, spiritual, mental, that accompanies living with a life-threatening disease. I don't think anyone who has not lived the experience can understand it. I know I didn't before my diagnosis.

It starts with the fact that musings, about the ends of our lives -- and who over 60 hasn't thought about the fact that most of our lives are behind us -- are really just that until life smacks you in the face with a situation that brings mortality front and center. It's sobering, surreal, difficult to comprehend, difficult to escape; there's no longer a what if, it just is. The control we think we have over our lives becomes a chimera -- it's gone, you get some semblance back, it seems to disappear once again. And so it goes. There are good days and not so good days; individual days that go from seeming almost pre-disease normal, to seeing or thinking of something that knocks me for a loop. I cry a lot more, sometimes quietly, sometimes with body-rattling sobs; I never know what will affect me so. And, this doesn't mean that I've given up, that my attitude is no longer "positive," that I don't have the goal of doing all I can to survive this cancer, it's just that the reality of living day-in and day-out with uncertainty about my future and that of those I love and the sadness that accompanies it can be difficult burdens at times.

All the more reason to appreciate the good things that come my way each and every day, gifts from so many sources. Thank-you to those who ran and walked in support of the Pancreatic Cancer Action Network on Sunday, whether in the city, at MC, in Fairbanks, or NY's Central Park; your support for me meant a lot. It was good to get out and walk and talk with friends and family, point out different species of ducks and other birds to anyone who would look and listen, and feel very much alive. I do feel better than I have in a long time, and based on the comments I hear, I'm the healthiest looking sick person around! Thanks to all who continue to pray for me, to keep me in your thoughts. Knowing so many are there for me helps counter the down times.

Peace,

Don

C2D1 - a new chemo cycle begins

2008-01-25T09:42:00.000-08:00

This past Wednesday, I began my second cycle of chemotherapy at UCSF after having blood drawn in the morning and then an appointment with my doctor. My blood work was good -- blood counts were back up and various other chemical indicators had also returned to normal. Ah, what a week off of chemo can do. I also found out that the cancer marker that is being followed as part of the study, CA 19-9, had dropped by about 40%. While it may not necessarily mean that my tumors are shrinking, it does indicate that the chemo drug is working -- it interferes with cancer cell metabolism. It also means that I will continue to receive the single drug, gemcitabine, for this next cycle. As long as it continues to have a negative effect on the tumor cells, as measured in CA 19-9 levels and every-other-cycle CT scans, that will be the case for future cycles as well. A second drug, Avastin, will only be added to the therapy when the cancer shows resistance to the gemcitabine. You might guess that means regular blood testing, and you are right. Blood is collected for a CA 19-9 test before the first and third treatment of every cycle; this is in addition to the blood drawn the day before each treatment for blood counts and liver and kidney function. Throw in the twice-a-day injections of Lovenox, a heparin-like drug that prevents blood clots from forming, and the picture of Don, the human pin cushion, might emerge. But, I have no complaints; it's all part of what has become normal for me.

So, some good positive stuff to report -- my pain has lessened, cancer-marker concentrations are down, the chemo is so far proving to be not too toxic to the rest of me, which means I can continue to get it in the higher doses administered to date. The side effects have returned with the latest treatment, but they are no worse than before; fatigue being most prominent, followed by a loss of appetite, and mild nausea at times. But, I've still got all my hair, plus the prayers and support of a cast of thousands, a loving family, and a positive attitude. What more does a man need? And that's about as philosophical as I'll get today. Thank-you again to everyone who has added to the "synergy" of forces (chemical, medical, emotional, psychological, and spiritual) that are helping me fight this disease.

Peace,

Don

A Rest Week

2008-01-19T17:52:00.000-08:00

I write from Stinson Beach again with the burnt-orange vestiges of sunset lingering in the west. It's the early evening of perhaps the best day I've had since more than a month before my diagnosis. Not unlike last week, the day began with warm sunshine, the white noise of the surf, but more importantly from my perspective, little of the abdominal pain that has been a constant companion for the past three months. And, without any chemo this week, I have more energy than I've had in a month. So, a great day to end a pretty good week, one that saw me at work for a few hours a day. Today began with coffee on the deck, the surge from a high tide running up under us, watching surfers enjoy the moderate swell under a bright, clear, and windless sky. A long walk with running buddies on the beach that was replete with story-telling, and best of all, laughter, followed. Norman Cousins has written about the connection between mind and body and the profound effects positive experiences, especially laughter, can have on healing. I am not one to disagree. Whether it's the laughter, the warm, sunny, stress-free environment, the prayers and good thoughts, the chemo drugs doing their jobs, all of those and something else working synergistically -- I really felt pretty normal today. I was able to eliminate what little pain I had in the morning and again late today with some across-the-counter ibuprofen, and nine hours passed between doses. My appetite is back, and food has returned to being more than something with calories and nutrients that I've had to put in my body. I know that things will change next week when the second cycle of chemotherapy begins, but I've learned to take each day at at time and relish the good times when they occur. Besides, the improvement in my symptoms may be a direct result of the chemo's effects on my tumors. So, the few days of fatigue, loss of appetite, perhaps a little nausea I experience each treatment week are a no-brainer tradeoff for the hoped for decrease in tumor size. As my students from a decade or so used to say, "Well, duh."

Back to the mind-soul-body connection. It's real. The prayers, the good karma, the positive vibes I am getting from so many sources: close friends and family, old friends and new, students and ex-students, and people I have never met, keep me going on days that are the antithesis of today. One that deserves note is a young girl in Fairbanks, Alaska, who has been making me origami cranes. Originally, my brother asked her to make one that he could bring to me shortly after my diagnosis. One was not enough in her mind, so she made 30 with plans to make a thousand! I receive occasional boxes -- we are up to 410 cranes, I think -- and the opening of each one is like a mini-Christmas. It's just one example of hundreds of things people have done that bouy my spirits, even when they seem ready to sink on those down days ( I knew I'd be able to sneak a metaphor of sorts in there somewhere), from the generous use of this house at Stinson to the meal service the Marin Catholic community has provided, to the companionship and laughter of friends and family, to the payers and good wishes of so many. I am humbled by and thankful for all of it. And, such a deal, I haven't had to pay for a lunch out in the past six weeks -- most recently with 15 classmates from Riordan High School ('64); five that I've known since first grade at St. Emydius.

Next week, the second chemo cycle begins, perhaps as early as Wednesday. I have an appointment with my doctor at UCSF that day, and if blood work I do earlier in the day is OK, I'll go directly to the infusion center afterwards. Otherwise, chemo will wait until Friday. As always, my thanks and indebtedness to all who are there for me.

C1D15 + Stinson Beach

2008-01-13T09:21:00.000-08:00

I'm writing from a house on the beach at Stinson Beach Sunday morning with a wam sun on my back and the continuous sounds of the surf in the background. The sun, the sense of getting away, have all but erased the grey funkiness of last week. My third chemo session was this past Friday, and I'm starting to feel the effects of the cumulative treatments. Yesterday, the new "f" word in my vocabulary, fatigue, was something of a constant, plus occasional nausea -- nothing too bad, but just enough to make it more difficult to eat, and eat I must. On the plus side, my abdominal pain has decreased a bit these past two days which means fewer drugs have been needed to manage it, always a good thing since I now have a small pharmacopia that I need to have with me -- injectable heparin twice a day to prevent more blood clots from forming (a side effect of the cancer), various pain killers, anti-nausea meds, anti-anxiety meds, pancreatic enzymes, stool softeners and laxatives to counteract the constipation that the pain meds can cause . . . all of this part of what now passes for normal.

It's interesting that when I write or talk about my disease and the treatment of it, sometimes I slip into a third-person frame of thinking -- and, no, I haven't started referring to myself as Don, ala Jimmy in an old Seinfeld episode. It's just that there are times when it is still hard to believe that this is happening to me; it's easier to think of it happening to this guy named Don rather than me. It doesn't last long, though, as I am all to often reminded that we are one and the same.

So we go forward. The first cycle of chemo is done; I get this upcoming week off to recover and get blood counts back up before starting my second cycle the week of the 21st. If my blood work is OK by Wednesday of that week when I meet with my doctor, I may be able to have my first treatment of the second cycle then. Otherwise it's scheduled for Friday the 25th. I've also started acupuncture on a weekly basis to help deal with some of the symtoms -- pain in particular.

Since I'm at Stinson, the metaphor today would have to deal with the Dipsea, a race I just began running ten years ago, but got hooked on immediately. Since 1999, the t-shirts given to those who finish the race say "survivor" on the sleeve; I wear one of those shirts to chemo as a reminder of the hard work, pain, and will required to do well in the Dipsea. While the prize is different -- a longer life vs. a black shirt -- the same attributes, especially the willingness to endure discomfort and pain, to listen to that inner voice that says, "You can do this, never give up," are essential to surviving this disease.

And as always, I appreciate the continued support of friends and family and others, some who I have talked to but have yet to meet -- cancer survivors whose own stories are models of hope. Thank-you to one and all, whether it's for a card, email, or your generosity.

C1D8

2008-01-09T09:51:00.000-08:00

First, my apologies for getting this update out so long after the fact, but last Friday's storm left us without power until late Tuesday morning. On top of that, I've also been in something of a funk the last day or so and a lack of emotional energy has kept me from sitting at keyboard and getting something out. But, I'm here now. First, an explanation of the title of today's missive -- no, it's not one of George Lucas' Star Wars creations, but rather an abbreviation designating last Friday as the eighth day of the first cycle of chemotherapy. This Friday will be C1D15 and so on. My second session of chemo went well and other than the expected fatigue and a bit of nausea, my body seems to have handled it well. This was my first treatment at the infusion center at UCSF, and it was quite a humbling experience, and one that put my situation in a perspective that it lacked before. There were probably on the order of 30 people receiving treatment at any given time while I was there; the total was more as some came and went while I spent my two hours in the chair. There were men and women 20 years older than me and others 40 years younger, some clearly "sick," others who, like me, seem OK from the outside. For part of my session, I sat next to a young woman and her father. They gave me reason to believe (here's a musical trivia question -- who wrote "Reason to Believe?" And, no, it wasn't Rod Stewart). She had been diagnosed with metastatic breast cancer 9 years earlier, and was in her second clinical trial at UC. She and her dad talked about a vacation to Ireland (he with a gentle brogue) they were planning during an upcoming break in her treatment -- they exuded hope, and it was catching.

Just reminding myself of that has helped lift some of the grey curtain that draped itself over me emotionally the last 24 hours or so. A wave of sadness, doubt, and fear came crashing down on me, and while I know it is part of the process and to be expected, it can be somewhat debillitating. While hope drives me forward toward that singlar goal of surviving this disease and all the benefits attached to survivorship, at times it seems such a thin line through a surrounding sea of potential despair. While walking this morning, I had to constantly remind myself that I need to take this one step at a time, one day at a time. During that walk, I remembered a climb I did in the Sierra Nevada, probably 25 years ago. I don't remember which peak it was, but after scrambling up a ridge to within a hundred feet of the summit, I faced the crux of the climb, a serrated, knife-like arete that narrowed to just a few feet and then to a short stretch, perhaps 10 feet, that was no more than 10-12 inches wide. It was time to make a choice -- consider the four hours of climbing to get to this point good enough, or take the risk of pushing through the fear to cross that last section and reach my goal (and then recross once that had been done). Quitting would have been the easier choice, and perhaps the wiser since I was alone with no rope, no one to belay me and insure my safety. But, it wasn't the choice I made. I crawled on all fours as the ridge narrowed and finally straddled that narrowest of sections with cliffs falling away both left and right, and slowly worked my way across -- there was no room for fear or second-guessing, all of my focus had to be on inching forward. I reached the summit and got back safely, exhilarated and exhausted.

So, no war metaphor this week. Surviving this cancer is not unlike getting to that peak so many years ago. It requires the quieting of fear and doubt, and an intense focus on the goal. It's what I am trying to do even though the dark thoughts can't always be kept at bay. A big difference is that, unlike reaching that peak, I know I'm not doing this alone.

Peace,

Don

Counterattack

2007-12-28T11:01:00.000-08:00

War and battle metaphors seem all too appropriate for the given situation, but I I can't think of a better way to express how I feel today. Yesterday, December 27, I had my first chemo treatment. I was able to start sooner than later because of the cooperation between Dr. Tempero at UCSF and Dr. Eisenberg at the California Cancer Center. Since UC's infusion center was all booked up, I was able to receive my first treatment here in Marin. So the fight is on and, hopefully, the cancer cells are finding that life isn't so easy for them any longer. So far, I'm doing pretty well in terms of the side effects. A bit more tired than usual, but so far so good. This was the first of three weekly treatments, then a week off, then another cycle. In between the chemo treatments, there will be plenty of blood draws, periodic CT scans. It's all somewhat surreal in a sense, all too real in others, especially for one who has never really been sick before. Emotionally, knowing that the battle has been joined has been a big lift. While there is still uncertainty, the wait is over; the plan is in place and underway, and I'm feeling good about that. I know how important a positive approach is in taking on such an adversary, even though it's sometimes hard to find that positve groove.

The chemo followed by a day the collection of some tumor tissue samples at UC that are required for the study I'm in. Not a totally pleasant procedure since I had to be semi-alert during the process, but they were able to get to some fairly accessible tumors in my liver and get core samples from them. The good news was that getting the samples was a challenge for the radiologist due to their small size.

The biopsy day followed a good Christmas with family at our house -- all my brothers and sisters, most of their children, our Matt and Jessica, and the star of the show, our grand-daughter Violet, were all in fine form. There was more than enough food and laughter for a week's worth of celebrating.

My thanks again to all my friends, family, colleagues, running buddies, doctors, and God for the support; you cannot know how much the cards, emails, walks, positive vibes and prayers are helping me in this fight for my life. God bless and peace.

Don

The news

2007-12-15T13:44:00.000-08:00

Monday, December 10, my life changed. After two months of looking for a source of chronic abdominal pain I had been experiencing, including endoscopy, ultrasound scans and CT scans, a second CT scan showed significant changes from the first. I had a mass in my pancreas and several lesions in my liver. The preliminary diagnosis was one I had hoped never to hear -- pancreatic cancer. It was confirmed the next day when biopsies of several of the tumors in my liver showed cancer cells. The CT-guided biopsies also included images of clots in a pulmonary artery, so I was admitted to the hospital overnight. On Wednesday, I met my oncologist, Peter Eisenberg, and was given some hope that this was a disease that could be managed to a degree with chemotherapy. He also suggested seeing another oncologist at UCSF, a specialist in the field of pancreatic cancer.

Friday, December 14, my wife, Jane, and I met with Dr. Margaret Tempero and came away with a more positive feeling that this could be something that could be managed, not cured, but managed so that I could extend my life past the few months I would have left otherwise. So, a plan is in process. I will be part of a clinical trial at UCSF. The day after Christmas, I will have some biopsies done to collect tumor tissue, and hopefully my first chemotherapy session Friday, December 28. If not then, chemo will definitely begin on January 4. I am anxious to get things started. More than anything, the uncertainty is a constant nag.

My emotions continue to rise and fall, not unlike the tides. It is difficult to keep the dark thoughts at bay, even though I know how important my attitude is in this battle for my life. I'm doing my best to take each day as it comes, to take this one step at a time. I know I'm in good hands with my doctors on both sides of the Golden Gate; each visit with one of them buoys my spirits. I've also enjoyed the normalcy visits with friends and family, walks, lunches, phone conversations have brought. Along with tears there has been a good amount of laughter and no shortage of love and support. For all of that, a big thank-you. And keep the prayers, good thoughts and positive vibes coming. I'm going to need all of the help I can get as I proceed on this journey.

Peace,

Don