Wednesday, June 10, 2009

A Final Entry

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)

Tuesday, June 9, 2009

More To Come

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....

Thursday, June 4, 2009

Services

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

Monday, June 1, 2009

Peace...peace at last

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...

Sunday, May 31, 2009

The Final Stretch

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.

Tuesday, May 26, 2009

Transition to Hospice

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.

Friday, May 8, 2009

Update, early May

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.

Tuesday, April 21, 2009

A long 17 days

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.

Tuesday, February 24, 2009

It's a blur

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

Sunday, February 1, 2009

Home!

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

Tuesday, January 20, 2009

Another turn in the road

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

Wednesday, December 31, 2008

Shattered

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

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

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

Peace,

Don

Saturday, December 20, 2008

Just a bit worse for the wear

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

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

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

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

Peace,

Don

Wednesday, December 3, 2008

A perfect storm . . .


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

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

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

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

Peace,

Don

Sunday, November 30, 2008

A bump in the road

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

Peace,

Don

Monday, November 3, 2008

Perspective


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

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

Peace,

Don

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

Monday, October 27, 2008

Needles and pins . . . pins and needles


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

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

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

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

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

Peace,

Don

Saturday, October 4, 2008

Sealed with a kiss . . .


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

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

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

Peace, Don

Monday, September 22, 2008

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

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

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

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

"When despair for the world grows in me

and I wake in the night at the least sound

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

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

I come into the peace of wild things

who do not trouble their lives with forethought of grief.

I come into the presence of still water.

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

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


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

Peace,

Don

Sunday, September 14, 2008

Finding a cure, providing hope

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

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

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

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

Peace,

Don