Well, they told us that the 'nadir', or low point for this treatment would be in 10-14 days, but it seems they are starting only after 4 days. John is feeling fairly poorly today. Not any nausea, as the medicine they give him for that seems to be working pretty well. Just tired and achy and very low energy.
There is ALOT of energy in this house today because it's Taryn's 21st birthday. John's not really happy about these 2 events happening on the same day, but I think he'll butch up and get thru the day and evening, in the hopes that he can rest up for a couple of days after.
We hope he gets to rest for most of the day, then we're off to the Thirsty Bear in San Francisco for the big celebration. We stayed up way past our bedtimes last nite to celebrate with Taryn at midnight with a cocktail. We just can't shortchange Taryn on her big day, no matter what. Life is for living afterall, and making the most of these opportunities to celebrate is really what it's all about.
Peace, hope, love & gratitude
Vicki
Saturday, June 16, 2007
Wednesday, June 13, 2007
Chemo - Part I (Thru Vicki's eyes)
UPDATE: Here are a couple of pictures of John in his "chemo chair". There are a few other shots in this album too, including a shot of some of those icky gall stones.
So the first chemo treatment is over. Everything so far seems fairly "normal", whatever that is (one has to wonder after all the BS we've been going thru in the last few months). John came home and had a sandwich and is watching a movie before he heads off to work. Me, I'm needing a nap. Pain pills and anti biotics take their toll I guess and my energy level is low.
Because John's chemo is only 30 minutes, there's not very much time to settle in. Hell, you can hardly read a Newsweek article in that time, much less get out the knitting and the snacks. I did take some time to write my impressions tho, and that's what I'll share here. John's mileage may vary from mine. That's nothing unusual, but I'll let him write his own when he can get around to it.
It was somewhat shocking to walk into the chemo area and see so many people being treated in so many different stages of this disease. Young people, old people, bald people and some people that looked like they were just executives on their lunch breaks. I had a moment where reality touched down into my small crack of denial and it was hard to keep my emotions in check. John was sweet about it, then a few minutes later, he had one of those moments for himself.
Some patients come in and stay for hours. John only has to stay for 30 minutes. One guy has to come every day for 5 days in a row and stay for 3 hours each time. He gets some time off after that, then gets right back into it. He brings himself a little DVD player to pass the time. Having just started treatment, he looked healthy & robust. I hope he'll recover from his testicular cancer as well as Lance Armstrong did.
It was amazing how many people looked so healthy. It being our first time, we were a little wide eyed I think, but most people just seemed very blase about the whole ordeal. They brought in their blankets (even tho it's 93 degrees here today) and they just sat down and got ready to rumble. In spite of the chemo class that we took, we were still unprepared for how the experience affected us.
As we move forward, it seems the trickiest part will be the scheduling. With blood testing, seeing the oncologist and making sure the schedule is consistent during the cycle, it all seems a little daunting to keep up with. Imagine the little confusion I have, multiplied by all the patients they see there every single day. Yikes!
So, that's it. John is taking the anti nausea medicine and they have scheduled him to continue taking that for at least 3 days. They say the really icky effects won't really happen till after he's had 2 or 3 treatments. They say he'll probably keep his hair and the most they expect is a little fatigue or slight flu like symptoms. I hope that what they say is right. I've seen the effects of chemo on other family and some friends and I think John will be really lucky if the predictions are realistic.
Thanks for stopping in. It means alot to me, and I'm sure to John, to know that people are keeping track of his progress and that care enough to make the effort.
I wish you all peace, love and hope
Vicki
So the first chemo treatment is over. Everything so far seems fairly "normal", whatever that is (one has to wonder after all the BS we've been going thru in the last few months). John came home and had a sandwich and is watching a movie before he heads off to work. Me, I'm needing a nap. Pain pills and anti biotics take their toll I guess and my energy level is low.
Because John's chemo is only 30 minutes, there's not very much time to settle in. Hell, you can hardly read a Newsweek article in that time, much less get out the knitting and the snacks. I did take some time to write my impressions tho, and that's what I'll share here. John's mileage may vary from mine. That's nothing unusual, but I'll let him write his own when he can get around to it.
It was somewhat shocking to walk into the chemo area and see so many people being treated in so many different stages of this disease. Young people, old people, bald people and some people that looked like they were just executives on their lunch breaks. I had a moment where reality touched down into my small crack of denial and it was hard to keep my emotions in check. John was sweet about it, then a few minutes later, he had one of those moments for himself.
Some patients come in and stay for hours. John only has to stay for 30 minutes. One guy has to come every day for 5 days in a row and stay for 3 hours each time. He gets some time off after that, then gets right back into it. He brings himself a little DVD player to pass the time. Having just started treatment, he looked healthy & robust. I hope he'll recover from his testicular cancer as well as Lance Armstrong did.
It was amazing how many people looked so healthy. It being our first time, we were a little wide eyed I think, but most people just seemed very blase about the whole ordeal. They brought in their blankets (even tho it's 93 degrees here today) and they just sat down and got ready to rumble. In spite of the chemo class that we took, we were still unprepared for how the experience affected us.
As we move forward, it seems the trickiest part will be the scheduling. With blood testing, seeing the oncologist and making sure the schedule is consistent during the cycle, it all seems a little daunting to keep up with. Imagine the little confusion I have, multiplied by all the patients they see there every single day. Yikes!
So, that's it. John is taking the anti nausea medicine and they have scheduled him to continue taking that for at least 3 days. They say the really icky effects won't really happen till after he's had 2 or 3 treatments. They say he'll probably keep his hair and the most they expect is a little fatigue or slight flu like symptoms. I hope that what they say is right. I've seen the effects of chemo on other family and some friends and I think John will be really lucky if the predictions are realistic.
Thanks for stopping in. It means alot to me, and I'm sure to John, to know that people are keeping track of his progress and that care enough to make the effort.
I wish you all peace, love and hope
Vicki
Tuesday, June 12, 2007
Update on Vicki
Hi friends,
I've been completely out of it for a couple of days and just thought I'd let you know what's going on.
Sunday evening (11:30pm), I started feeling excruciating pain in my right side and my kids and husband decided I should go to the ER, which I did. Spent all of Sunday nite there, till they sprung me Monday afternoon. They did all the things you might expect. CT Scan, xrays, blood & urine tests, yada yada yada. They also pumped me full of lots of drugs that would not just take away the pain, but they took me out of consciensness. In LaLa land, you don't much give a crap about any pain your having, or much of anything else.
To make a long story short, they didn't find exactly what was hurting so much, but found a teeny little bladder infection for which they gave me some antibiotics. They also gave me dilaudin for pain. This cracks me up because the dilaudin is something that takes you to LaLa land, and doesn't really address the problem that the pain is coming from. grrrrrrrrr. This makes me very unhappy. Last nite, after I was home, my side was still hurting (much like a side ache you can get from running too much) and my only option was to take the dilaudin so I could at least go to sleep.
I went to see the surgeon today and he sees nothing that should be causing this kind of pain either. Fortunately, the pain is not as bad today, so I feel a little more willing to just wait and see. It still hurts when I take a deep breath, so I'm just trying not to go like that too much. He also offered me percoset, which I hope will take away pain without drugging me so I can't function.
All in all, I still think I'm getting better from the surgery. I'm frustrated to not feel like a million bucks after getting rid of that nasty gall bladder. I'm a very impatient patient. I do much better at caring for other patients than I do with taking care of myself I guess.
Tomorrow, John will recieve his first chemotherapy treatment in Walnut Creek. He's been fighting these boards that tell him not to participate in a study under Dr Tempero at UCSF Comprehensive Cancer Care Center, but it looks like he's going to lose that fight, so we're trying to see it as a sign that it was probably not the best thing for him to do and we're just going ahead with the prescribed treatment of his oncologist at Kaiser. Time is too short to fight anymore. One thing they do know (and they don't know very many things at all about pancreatic cancer, lemme tell ya), is that patients who have been resected as John has, have a much better chance of survival if they get SOME kind of treatment within 60 days of the resection....before any stray cancer cells have a chance to get a foothold in some other organ. That deadline is coming up here in just a few days, so there's no more time to continue looking for other trials. So much for trying to contribute to future generations of pancreatic cancer patients. He gave it his best shot, now it's time to just concentrate on surviving. He's gained about 15 lbs and he's gained alot of strength since being out of the hospital, so the present is looking good. We are keeping our fingers crossed that things keep looking up for him and for me.
I look forward to getting out n about again SOONEST!
Love & peace
I've been completely out of it for a couple of days and just thought I'd let you know what's going on.
Sunday evening (11:30pm), I started feeling excruciating pain in my right side and my kids and husband decided I should go to the ER, which I did. Spent all of Sunday nite there, till they sprung me Monday afternoon. They did all the things you might expect. CT Scan, xrays, blood & urine tests, yada yada yada. They also pumped me full of lots of drugs that would not just take away the pain, but they took me out of consciensness. In LaLa land, you don't much give a crap about any pain your having, or much of anything else.
To make a long story short, they didn't find exactly what was hurting so much, but found a teeny little bladder infection for which they gave me some antibiotics. They also gave me dilaudin for pain. This cracks me up because the dilaudin is something that takes you to LaLa land, and doesn't really address the problem that the pain is coming from. grrrrrrrrr. This makes me very unhappy. Last nite, after I was home, my side was still hurting (much like a side ache you can get from running too much) and my only option was to take the dilaudin so I could at least go to sleep.
I went to see the surgeon today and he sees nothing that should be causing this kind of pain either. Fortunately, the pain is not as bad today, so I feel a little more willing to just wait and see. It still hurts when I take a deep breath, so I'm just trying not to go like that too much. He also offered me percoset, which I hope will take away pain without drugging me so I can't function.
All in all, I still think I'm getting better from the surgery. I'm frustrated to not feel like a million bucks after getting rid of that nasty gall bladder. I'm a very impatient patient. I do much better at caring for other patients than I do with taking care of myself I guess.
Tomorrow, John will recieve his first chemotherapy treatment in Walnut Creek. He's been fighting these boards that tell him not to participate in a study under Dr Tempero at UCSF Comprehensive Cancer Care Center, but it looks like he's going to lose that fight, so we're trying to see it as a sign that it was probably not the best thing for him to do and we're just going ahead with the prescribed treatment of his oncologist at Kaiser. Time is too short to fight anymore. One thing they do know (and they don't know very many things at all about pancreatic cancer, lemme tell ya), is that patients who have been resected as John has, have a much better chance of survival if they get SOME kind of treatment within 60 days of the resection....before any stray cancer cells have a chance to get a foothold in some other organ. That deadline is coming up here in just a few days, so there's no more time to continue looking for other trials. So much for trying to contribute to future generations of pancreatic cancer patients. He gave it his best shot, now it's time to just concentrate on surviving. He's gained about 15 lbs and he's gained alot of strength since being out of the hospital, so the present is looking good. We are keeping our fingers crossed that things keep looking up for him and for me.
I look forward to getting out n about again SOONEST!
Love & peace
Sunday, June 03, 2007
Trials
We met with the people at UCSF about the clinical trial and a second opinion and they were great. We directly interacted with 5 people, including the world famous and wonderfully personable Dr. Tempero. And the other 10 people in the office all knew my name and where I should be going next. Even so, with all that professional brain power walking around, I remarked to Vicki that I am just as much an expert on the treatment of Pancreatic Cancer as anyone we've met so far - nothing really is the 'best treatment' and no one really knows why some things work for some people.
Amazingly enough, Kaiser has decided to not fund my participation in the UCSF trial. The wording, following 2 internal appeals, is that "there is not clinical evidence of proven efficacy with the combined therapy". At first I was good with the decision, but the more I think about the reasoning they've declared, the less satisfactory it becomes. I don't know who to break it to at Kaiser, but there is no therapy for this type of cancer that has "proven efficacy". None. So what's the deal? Is it really Money? Kaiser got me started on pursuing a trial and what greater contribution could I possibly make to finding a cure, or at least eliminating another worthless treatment? I did not get to tell anybody how I felt about it - it was a bunch of Kaiser people looking over my medical record and the clinical trial proposal, from which they turned me down. As detailed on these pages, Chemo Kaufman offered to give me a) no further treatment, b) chemo therapy, or c) chemo radiation - my choice of 3. Seems odd to give me that much of a range of choices when the major concern is proven efficacy of treatment. I am told that the Genentech drug (that Genentech supplies for 'free' during the trial) will cost about $120k over the 6 month course of the trial - how much would that suck for Kaiser if the drug actually works and becomes one of the choices they need to cover for their patients. I don't know - maybe they really are concerned about the side affects.
Now I've made an appeal to the California Department of HMO's (or something like that). And to tell the truth, I'm having second thoughts about the trial. I mean, I'm still interested in saving somebody a little turmoil over choice of treatment 5 or 10 years from now. But there really is a potential cost to the information. And now that I have a date and time for chemo to start (June 13 at noon thirty, second floor, Walnut Creek Hospital), it might be easiest to go with the flow and not have to worry about the possible side affects of the trial drug. I have had the whipple procedure, and surely Chang would spit in the face of bowel perforations or abnormal and excessive clotting or uncontrolled internal bleeding, but it would still suck for me.
Meanwhile, I continue to gain weight and energy and am up to about 20 hours of work per week. My brother Steve and my wonderful sister in law Laura came for the weekend. We toured the Napa valley in preparation for Vicki's surgery. Now we're nursing her return to vigor (she tells everyone, and especially me, that she is a far better patient than I ever was - I shall remain silent). The surgery took longer than anticipated, the gall bladder was VERY inflamed, and I think she's finally over the morphine (2 days later) that she got in the recovery room. She's still sore and moves pretty slowly. And we prepare for Taryn's 21st Birthday Bacchanal.
Amazingly enough, Kaiser has decided to not fund my participation in the UCSF trial. The wording, following 2 internal appeals, is that "there is not clinical evidence of proven efficacy with the combined therapy". At first I was good with the decision, but the more I think about the reasoning they've declared, the less satisfactory it becomes. I don't know who to break it to at Kaiser, but there is no therapy for this type of cancer that has "proven efficacy". None. So what's the deal? Is it really Money? Kaiser got me started on pursuing a trial and what greater contribution could I possibly make to finding a cure, or at least eliminating another worthless treatment? I did not get to tell anybody how I felt about it - it was a bunch of Kaiser people looking over my medical record and the clinical trial proposal, from which they turned me down. As detailed on these pages, Chemo Kaufman offered to give me a) no further treatment, b) chemo therapy, or c) chemo radiation - my choice of 3. Seems odd to give me that much of a range of choices when the major concern is proven efficacy of treatment. I am told that the Genentech drug (that Genentech supplies for 'free' during the trial) will cost about $120k over the 6 month course of the trial - how much would that suck for Kaiser if the drug actually works and becomes one of the choices they need to cover for their patients. I don't know - maybe they really are concerned about the side affects.
Now I've made an appeal to the California Department of HMO's (or something like that). And to tell the truth, I'm having second thoughts about the trial. I mean, I'm still interested in saving somebody a little turmoil over choice of treatment 5 or 10 years from now. But there really is a potential cost to the information. And now that I have a date and time for chemo to start (June 13 at noon thirty, second floor, Walnut Creek Hospital), it might be easiest to go with the flow and not have to worry about the possible side affects of the trial drug. I have had the whipple procedure, and surely Chang would spit in the face of bowel perforations or abnormal and excessive clotting or uncontrolled internal bleeding, but it would still suck for me.
Meanwhile, I continue to gain weight and energy and am up to about 20 hours of work per week. My brother Steve and my wonderful sister in law Laura came for the weekend. We toured the Napa valley in preparation for Vicki's surgery. Now we're nursing her return to vigor (she tells everyone, and especially me, that she is a far better patient than I ever was - I shall remain silent). The surgery took longer than anticipated, the gall bladder was VERY inflamed, and I think she's finally over the morphine (2 days later) that she got in the recovery room. She's still sore and moves pretty slowly. And we prepare for Taryn's 21st Birthday Bacchanal.
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