Well, treatment #1 of my second round of the FOLFIRINOX regimen will be in the books once my 5-FU ball is detached mid-afternoon. I am excessively pleased with the minimal side effects this time and complete lack of vomiting. I haven't even really been that queasy. Feeling good is good enough for me...5 more after today starting 12/13 and every other Tuesday. I will be done in early February and then it will be time for another MRI. But that's getting ahead of myself.
I've tried to stay focused on the present as much as possible, and enjoy every moment that I can. I've been reading a lot and learning a lot about myself since I first got sick in April. More importantly, I've learned how many people in life genuinely care about me. That, more than anything else, has given me strength I didn't know I had.
Neither time nor distance has diminished any of the friendships I've forged in my life, and for that I am truly thankful. From childhood to adulthood, you've all been there for me in one way or another. I love my family and friends more than anything, except Elaine. To paraphrase Barry White, she's my first, my last, my everythang....
Information and updates for friends and family concerning my fight against pancreatic cancer and experience with chemotherapy.
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Wednesday, November 30, 2011
Tuesday, November 29, 2011
Totally sleep deprived but otherwise feeling GREAT!!!
Up since about midnight, but woke up hungry and energetic. Very happy there was no vomiting involved; I didn't even come close! This is 1st. It's a rainy day in Goochland, so a perfect day for me to catch up on some sleep and recover. I want to be working out again by Thursday. I feel more determined than ever to win this fight. It helps to have such a large cheering section.
I'm still upbeat and looking forward to Christmas, and decorating for Christmas. I'm jumping in Griswold style this year...sans saucer sled. ;-)
Thanks again to all my family and friends who have continued to prop me up time and time again. I can never thank any of you enough.
Peace to all.
Mike
I'm still upbeat and looking forward to Christmas, and decorating for Christmas. I'm jumping in Griswold style this year...sans saucer sled. ;-)
Thanks again to all my family and friends who have continued to prop me up time and time again. I can never thank any of you enough.
Peace to all.
Mike
Monday, November 28, 2011
Chemotherapy - Round 2 - And some photos
Ding, ding. Round 2 of chemo starts this morning at 8:30 am. 6 treatments total, ending in February. I'm still on the same regiment (FOLFIRINOX) but at the original dosage I began with Round 1 in August. (My oncologist upped my dosage at treatment 4 during Round 1, and that was completely horrible, so we're not doing that again, thankfully.)
I'm nervous, but mostly because the side effects are so terrible. At least I've been able to pack on the pounds and work out in the interval since my last treatment. I'm almost at 200 lbs., which is about 12 lbs. heavier than when I started Round 1 in August. So I've got some wiggle room to lose weight. This is a good thing. Like Dr. John says, I'm trying to accentuate the pos-i-tive. It isn't always easy to be upbeat, but I'm doing my best.
Here's a photo of me and my pooh bear, Tina. It makes me smile.
And here's me and my mom on Thanksgiving Day at my in-law's house:
And here's Elaine and her PIC, Tina:
I'm nervous, but mostly because the side effects are so terrible. At least I've been able to pack on the pounds and work out in the interval since my last treatment. I'm almost at 200 lbs., which is about 12 lbs. heavier than when I started Round 1 in August. So I've got some wiggle room to lose weight. This is a good thing. Like Dr. John says, I'm trying to accentuate the pos-i-tive. It isn't always easy to be upbeat, but I'm doing my best.
Here's a photo of me and my pooh bear, Tina. It makes me smile.
And here's me and my mom on Thanksgiving Day at my in-law's house:
Tuesday, November 22, 2011
I have a lot to be thankful for...
Even though it may seem like I've got a pretty bad deal here, I'm extraordinarily thankful for the life lessons I have learned since getting sick in April. I'm even more thankful for the people in my life who supported me throughout, and helped me see the lessons through all the fog. It's not about how much money you have, how big your house is, how prestigious your job may be, where you went to school, what political party or religion you follow, your family name, the car you drive, or the clothes you wear. Life is all about the human connections we make and what we do with them and our brief time on earth. If you're not living in the present, you're not living. That's what I think anyway. Since it's my blog, I can say whatever the %$#@ I want about it.
To be continued...
To be continued...
Monday, November 21, 2011
Insomnia and fighting off the dark thoughts
I've been having trouble sleeping through the night since learning my MRI results, and it's getting frustrating. I am looking forward to Thanksgiving this week, and seeing friends and family, but at the same time it's next to impossible to forget that 6 more chemo treatments loom starting the Monday after Thanksgiving. It's very difficult to "stay in the present" and not worry about what lies ahead. I'm doing the best that I can.
I have a lot to be thankful for this week. Maybe I should start a running list...first I think I'll try to get back to sleep.
This sucks.
I have a lot to be thankful for this week. Maybe I should start a running list...first I think I'll try to get back to sleep.
This sucks.
Saturday, November 19, 2011
MRI Results and More Chemo
Well, this past Monday I had my abdominal MRI to determine the effectiveness of my first round of chemotherapy. My oncologist called Wednesday to tell me that although there has been no growth in any of the cancerous masses (pancreas and outer lining of my stomach), there has been no shrinkage either. So after 6 weeks I am right back where I started, but no worse off (at least physically...mentally is a different story).
Starting Monday, 11/28 (right after Thanksgiving) I return to chemotherapy for another 6 treatments over 3 months. Same regimen, albeit dialed back to the original dosage so I can better tolerate the side effects. The increased dosage was too powerful and I'd never make it through 6 treatments at that level.
To say I'm disappointed in the lack of progress is an understatement, but at the same time I am at least pleased that the cancer hasn't grown. I am going to enjoy the week ahead, including Thanksgiving, and eat and workout as much as I can. I want to get as much strength and muscle mass back as I can in a short period of time. I've got to win this fight.
Many thanks to all of my friends an family for the love and support. I wouldn't have made it this far without it. You all know who you are and I love you.
Starting Monday, 11/28 (right after Thanksgiving) I return to chemotherapy for another 6 treatments over 3 months. Same regimen, albeit dialed back to the original dosage so I can better tolerate the side effects. The increased dosage was too powerful and I'd never make it through 6 treatments at that level.
To say I'm disappointed in the lack of progress is an understatement, but at the same time I am at least pleased that the cancer hasn't grown. I am going to enjoy the week ahead, including Thanksgiving, and eat and workout as much as I can. I want to get as much strength and muscle mass back as I can in a short period of time. I've got to win this fight.
Many thanks to all of my friends an family for the love and support. I wouldn't have made it this far without it. You all know who you are and I love you.
Thursday, November 10, 2011
Treatment #6 of 6 is almost history
Today at 12:40 pm I get my flourouracil ball detached and this will officially end this round of chemotherapy. Hopefully it was my last treatment.
I get a complete abdominal MRI on Monday afternoon 11/14, and see my oncologist on 11/22 to find out what comes next: more chemo or surgery. As I've written repeatedly, surgery is my goal. The waiting for the MRI results will be excruciating, but not nearly as bad as recovering from chemo. This last round gave me a rough night Tuesday, and the first half of yesterday was absolutely dreadful. By last night, however, I had a hearty appetite and slept through the night without incident. I feel pretty good today, although extreme fatigue will be with me for days to come.
On Monday I had to start taking a pancreatic enzyme supplement because I wasn't digesting my food properly and therefore was not getting proper nutrition. The supplement had an instant impact however, and everything seems a-ok at the moment. Weird tidbit: the supplement is made from pig pancreas. I hope I don't develop the urge to dig for truffles with my snout, or turn into "Pigman" (Seinfeld reference). Anyway, I'm feeling good and looking forward to a visit from my mom, brother, and one of my nieces this weekend.
My best friend from high school, Terry O'Connor, came to visit this past weekend, and we had a blast. I treasure his friendship, and that of his entire family. Here's a photo from the weekend:
I get a complete abdominal MRI on Monday afternoon 11/14, and see my oncologist on 11/22 to find out what comes next: more chemo or surgery. As I've written repeatedly, surgery is my goal. The waiting for the MRI results will be excruciating, but not nearly as bad as recovering from chemo. This last round gave me a rough night Tuesday, and the first half of yesterday was absolutely dreadful. By last night, however, I had a hearty appetite and slept through the night without incident. I feel pretty good today, although extreme fatigue will be with me for days to come.
On Monday I had to start taking a pancreatic enzyme supplement because I wasn't digesting my food properly and therefore was not getting proper nutrition. The supplement had an instant impact however, and everything seems a-ok at the moment. Weird tidbit: the supplement is made from pig pancreas. I hope I don't develop the urge to dig for truffles with my snout, or turn into "Pigman" (Seinfeld reference). Anyway, I'm feeling good and looking forward to a visit from my mom, brother, and one of my nieces this weekend.
My best friend from high school, Terry O'Connor, came to visit this past weekend, and we had a blast. I treasure his friendship, and that of his entire family. Here's a photo from the weekend:
Thursday, October 27, 2011
Long overdue post
I can't believe the last time I posted was October 5! This month has flown by. The day after my last post, on Oct. 6, I had to have an emergency ERCP to replace the stents in my common bile duct. I woke up that morning with a series of symptoms that made clear to me that the duct was blocked. I emailed my gastroenterologist, Dr. Sandhu at 6 a.m. explaining my circumstances, and he replied within 30 minutes. I was in and out of VCU Medical Center that same day with a brand new, covered metal stent that should last from 6 months to 2 years. I was home that evening by 5 p.m. and felt light years better. The improvement in my appetite and energy level was immediate and stark. Of course, the party lasted only a few days because the following Tuesday, Oct. 11, I had chemotherapy after an office visit with my oncologist.
On the 11th my oncologist, Dr. Shaw, told me that I was doing really well with the chemotherapy (and most people can't handle the regimen I'm on) and was going to "reward" by increasing the strength of my chemo drugs by 5% across the board that very day. So my already harsh chemotherapy was about get more challenging. I have to confess my instant reaction was "great, I'm doing really well." Once the drugs started to drip though it was obvious to me that I was in for one hell of a ride. The neuropathy in my fingers and toes was almost instantly worse within minutes of the first drug (oxypalatin) going in. I couldn't even touch room temperature objects without sharp pain in my fingers. Then the next drug (irinotecan), the one with the worst side effects, started and within minutes I felt nausea like never before. By the time that bag finished dripping I was barfing like a champ. They gave me lots of anti-nausea drugs by IV and that helped me recover and eat when I got home that evening. The truly amazing thing was that I rebounded very quickly--more quickly than with any previous chemo treatment. By Wednesday afternoon, the next day, I was up and about and eating semi-normally. Elaine is convinced the stent replacement was crucial to my quick recovery. By Saturday, two days after my 46-hour chemo ball of the last drug was detached, I drove the pick-up truck, with Elaine, to and from a furniture store and was moving furniture to and from my buddy's house up the road.
Over the next week and a half I managed to gain weight (I was up to 188 lbs. at chemo on 10/25) and exercise as much as my fatigued body would allow. When I arrived at chemo Tuesday, the nurses remarked at how great I look. That's always a nice feeling. I didn't barf at chemo this time, although I came about as close to doing so as one can. This time it hit me at 2 a.m. on Wednesday and it was awful. I slept very little that night and despite Herculean efforts, could not sleep during the day yesterday. Last night, however, I slept like it was my job and feel good this morning. (I'm back on caffeine again by the way, but only one cup of coffee or tea in the morning). I get my chemo ball detached today at about 1 p.m. and then I am less than two weeks away from my (hopefully) final chemo treatment on Nov. 8. The following Monday, Nov. 14, is a big day. I am having a full abdominal MRI to see what progress, if any, we've made in killing off the bastard cancer cells, and whether I am a candidate for surgery (the Whipple procedure) that will eliminate the need for bile duct stents for the rest of my life. The surgery is my goal, which is strange in a way because it could kill me and will take up to 2 months to recover. However, it could also extend my life significantly beyond the 11 months this chemotherapy is supposed to buy me. The result of the MRI could also be that I need more and/or different chemo. We shall see but I'm hoping for a truly Happy Thanksgiving.
I want everyone to know that I genuinely appreciate every word of support that all of my friends have provided. I can never thank my wife enough. She is an amazingly strong woman, and a phenomenal caregiver. I love you, Elaine, and always will.
On the 11th my oncologist, Dr. Shaw, told me that I was doing really well with the chemotherapy (and most people can't handle the regimen I'm on) and was going to "reward" by increasing the strength of my chemo drugs by 5% across the board that very day. So my already harsh chemotherapy was about get more challenging. I have to confess my instant reaction was "great, I'm doing really well." Once the drugs started to drip though it was obvious to me that I was in for one hell of a ride. The neuropathy in my fingers and toes was almost instantly worse within minutes of the first drug (oxypalatin) going in. I couldn't even touch room temperature objects without sharp pain in my fingers. Then the next drug (irinotecan), the one with the worst side effects, started and within minutes I felt nausea like never before. By the time that bag finished dripping I was barfing like a champ. They gave me lots of anti-nausea drugs by IV and that helped me recover and eat when I got home that evening. The truly amazing thing was that I rebounded very quickly--more quickly than with any previous chemo treatment. By Wednesday afternoon, the next day, I was up and about and eating semi-normally. Elaine is convinced the stent replacement was crucial to my quick recovery. By Saturday, two days after my 46-hour chemo ball of the last drug was detached, I drove the pick-up truck, with Elaine, to and from a furniture store and was moving furniture to and from my buddy's house up the road.
Over the next week and a half I managed to gain weight (I was up to 188 lbs. at chemo on 10/25) and exercise as much as my fatigued body would allow. When I arrived at chemo Tuesday, the nurses remarked at how great I look. That's always a nice feeling. I didn't barf at chemo this time, although I came about as close to doing so as one can. This time it hit me at 2 a.m. on Wednesday and it was awful. I slept very little that night and despite Herculean efforts, could not sleep during the day yesterday. Last night, however, I slept like it was my job and feel good this morning. (I'm back on caffeine again by the way, but only one cup of coffee or tea in the morning). I get my chemo ball detached today at about 1 p.m. and then I am less than two weeks away from my (hopefully) final chemo treatment on Nov. 8. The following Monday, Nov. 14, is a big day. I am having a full abdominal MRI to see what progress, if any, we've made in killing off the bastard cancer cells, and whether I am a candidate for surgery (the Whipple procedure) that will eliminate the need for bile duct stents for the rest of my life. The surgery is my goal, which is strange in a way because it could kill me and will take up to 2 months to recover. However, it could also extend my life significantly beyond the 11 months this chemotherapy is supposed to buy me. The result of the MRI could also be that I need more and/or different chemo. We shall see but I'm hoping for a truly Happy Thanksgiving.
I want everyone to know that I genuinely appreciate every word of support that all of my friends have provided. I can never thank my wife enough. She is an amazingly strong woman, and a phenomenal caregiver. I love you, Elaine, and always will.
Wednesday, October 5, 2011
This is more like it
Despite a splitting headache (I quit caffeine for good yesterday) I feel great today, and am full of energy. This is the polar opposite of how I felt yesterday. I was up early and walked the dog despite the cold (the sensitivity lessens each day removed from chemo) and feel terrific (again, headache notwithstanding). Staying away from caffeine has absolutely helped with the nausea, as has the change to Zofran. Elaine was so happy to have my help this morning, and to see me feeling like my "old self" even if only for one day.
I intend to suck the marrow out of today and then watch Roy Oswalt send us to the NLCS for the fourth year in a row. Go Phils!!!!!!
PS - I'm down another pound to 179, but it could be because I've been exercising more. Gotta watch the calorie count more closely.
I intend to suck the marrow out of today and then watch Roy Oswalt send us to the NLCS for the fourth year in a row. Go Phils!!!!!!
PS - I'm down another pound to 179, but it could be because I've been exercising more. Gotta watch the calorie count more closely.
Tuesday, October 4, 2011
Bad Day
I'm having a rough time today, and it's mostly frustration with the ever-present queasiness from chemo. It never quite seems to go away, and the slightest misstep -- the wrong food, the wrong beverage, too much of one or the other -- and it immediately returns as full-blown nausea. I'm over it. Today I am going back on Zofran (a previously prescribed anti-nausea med) and stopping with the Phenergan, which lately has not been all that effective. The Zofran seems to be helping a bit this morning, but I still have this undercurrent of queasiness and fatigue which I can't seem to shake. I'm working hard to keep my frustration from boiling over into anger, because that upsets my stomach all the more, but it consumes all of my focus and energy (of which I have little at the present moment). I've lost 5 pounds since last Tuesday (down to 180) despite eating all I can. This is discouraging in the extreme.
I know that we all have good days and bad days, but lately I feel like I've been getting a glut of bad ones. One or two days of "feeling good" out of each two-week chemo cycle isn't cutting it. I will address this with my oncologist on Tuesday when I am scheduled to see him next. I wish I could know for certain that all of this is worth it and that the cancer cells are dying in droves, but I don't. All I know is how I feel and most of the time it isn't good. The thought of two more months of this overwhelms me at times, like now. There are others far worse off than me, but this knowledge doesn't seem to help me. I just want to feel better and more energetic, but nothing I try seems to work.
I guess there's always tomorrow...right now I just have to deal with it as best I can. I'm trying.
I know that we all have good days and bad days, but lately I feel like I've been getting a glut of bad ones. One or two days of "feeling good" out of each two-week chemo cycle isn't cutting it. I will address this with my oncologist on Tuesday when I am scheduled to see him next. I wish I could know for certain that all of this is worth it and that the cancer cells are dying in droves, but I don't. All I know is how I feel and most of the time it isn't good. The thought of two more months of this overwhelms me at times, like now. There are others far worse off than me, but this knowledge doesn't seem to help me. I just want to feel better and more energetic, but nothing I try seems to work.
I guess there's always tomorrow...right now I just have to deal with it as best I can. I'm trying.
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