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
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
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
Peace,
Don
Wednesday, December 31, 2008
Shattered
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
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
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