I haven't felt much like writing. We went in to visit with Chemo Kaufman, a great guy and I'm glad we have him for this coming stage, but he was just so full of choices. It appears that there is really no universally accepted treatment for Pancreatic Cancer. Some people just get operated on, some get chemo, some get chemoradiation, some use a chemo drug called Gemzar and some use one called 5 FU. Doctor's in Europe prefer chemo without radiation as opposed to the US where they prefer the radiation.
So we came home and read everything we could find on Pancreatic Cancer and its treatment. I'm not sure that was such a great idea. It didn't really illuminate the 'right' choice for a course of treatment, but it did a lot to provide me with a couple of sleepless nights. We contacted this great organization called PanCan.org, got ourselves assigned to an advocate there, and had a couple of great conversations with him - that took a lot of the gloom and doom off of it for me. He agreed with Kaufman that people should consider participating in clinical trials if possible. Trials are performed by cancer research groups looking to advance treatment possibilities for patients. It turns out that UCSF is currently recruiting people for a trial involving Gemzar in tandem with some other new drug - they want to give people this new combination and then follow them to see if it provides some better results than Gemzar alone. I called them and it seems like I fit the criteria for inclusion in the trial. So I'm going to see the Doctors there on the 30th. I called Kaufman and told him that 1. if they accept me, then I will be participating in the trial and 2. if they refuse me, I will call him on the 31st with my decision as to the style of treatment I want. And I've stopped reading stuff.
I'm leaning towards no radiation. It seems that every one of the choices provides about the same kind of outcome ratios - why not go for the one that's easiest on me and mine.
Went to chemo class today. It was a great class (all things considered) taught by a survivor - one of the oncology nurses. I hope I get her. Full of tips and information and humor and compassion. The worst thing for her was losing her hair. Go figure. She said that men frequently have to shave less often. And anyone that met my brothers knows that my full head of hair is living on borrowed time anyway. She talked a lot about maintaining your weight and fighting the affects of chemo on your appetite and the fatigue that it causes. I'm feeling so proud of the 13 lovely pounds that I've worked so hard to put on that I'm loathe to start the process of losing them. My energy is coming back a little everyday - I've returned to work (very short days on a trial basis, but hey, work is work).
Tuesday, May 22, 2007
Saturday, May 12, 2007
Friday, May 11, 2007
Overdue
It's been a while - hope I don't ramble too much.
I have eaten more food in the last 2 weeks than any full month in my Life Before the Whipple and I can't gain a pound. I'm stuck. I am never hungry, I eat by the clock, I'm trying to increase the amount of fat I eat everyday and I get nothing. I feel like my face is filling out, my energy is increasing (albeit slowly), and I could probably win at arm wrestling with a 6 year old. I think I'm somewhat frustrated with how slow progress is going. I've got a call in to a Nutritionist to count up what I've been consuming to maybe offer some advice. I'm pushing (maybe a little too hard according to some) on my walking - but as I've discussed with Vicki, I'd rather figure out how to get more calories in than reduce the calories I spend. Getting outside is an important part of my peace of mind.
All else is going pretty well. Kevin has been in town this week and has catered to my every whim, just as he should. We've been getting down to the store almost everyday to say hello and try to stay in touch with current events there. Vicki has been getting out and about a little more as she gets more confident in my ability to make it on my own for a few hours. Looks like she's scheduled for her gall bladder removal in early June - she should be out of commission for a week or so.
______________________________________________
FROM VICKI: Hi everyone. Yes indeed. In case you were wondering, I have scheduled my surgery for June 5, with a pre-op consult and physical on May 30. I wanted to wait till after my birthday, so I could #1, enjoy that and #2, give John a little more time to get stronger. By then, we will have lived for a couple of weeks without any brotherly support and visitation (Cosgrove brothers that is, my brother Jay and his wife Sarah, continue to be a massive help with every single type of support you could possibly imagine). I believe that John will be good to fix ME breakfast for a couple of days while I get over the soreness of orthroscopic gall bladderectomy. Probably not the right term for it, but it made me giggle a little bit.
We might have written about this before, but John will have his first appointment with the Kaiser Oncologist (We call him Chemo Kaufman) on May 17th. At that time, I assume (while continuing to manage expectation as much as possible) we'll find out what the course of treatment for John is going to be. I hope to find out how much, how long, how sick it will make him (0r not) and how we measure success in the future. I hope to know how often John will have to be tested, scanned, checked up or what we will have to do to stay on top of any future cancer and if there will ever be a time when we can be less vigilant about his health and go about living normally again, without waiting for the next phase of being a cancer patient/survivor.
We have been writing less, as there is less to impart to everyone at the moment. The focus at David Street now is to work on getting John stronger and fatter. Period. There is a fine balance between calories in and calories out. Many of us wish we had to put on weight, like John does. We would be happy with even 5 or 10 lbs right now, but ultimately, it would be good to see 40 lbs on him. I'd be happy to give him 40 of my excess pounds, as would alot of people I know. While that's not going to happen, this low fat eating has helped me drop of few of those campaign pounds that I put on last year.
It's been great to get out and about a little bit in the last couple of weeks. It was a wonderful reunion on Wednesday when I went into San Francisco to see Governor Dean at the Palace Hotel. I've posted some pictures of the event if you're interested in them. So great to see so many of the people I've been working with over the last 4 years and even better to know that they're all still active and working to make a better country for us and our kids. Many thanks to Howard Dean for creating this extraordinary community of activists who work with and for each other.
Special thanks today go to Art Torres and Christine P. Thanks for your support and your offers of help. I will remember to take you up on them at the first sign of needing to. Once we get thru this particular holding pattern, it is very possible that you'll be hearing from us.
Over n out for now. We'll try to be better at posting. Thank you all for checking in. It means alot to all of us.
Peace, hope and love
Vicki
I have eaten more food in the last 2 weeks than any full month in my Life Before the Whipple and I can't gain a pound. I'm stuck. I am never hungry, I eat by the clock, I'm trying to increase the amount of fat I eat everyday and I get nothing. I feel like my face is filling out, my energy is increasing (albeit slowly), and I could probably win at arm wrestling with a 6 year old. I think I'm somewhat frustrated with how slow progress is going. I've got a call in to a Nutritionist to count up what I've been consuming to maybe offer some advice. I'm pushing (maybe a little too hard according to some) on my walking - but as I've discussed with Vicki, I'd rather figure out how to get more calories in than reduce the calories I spend. Getting outside is an important part of my peace of mind.
All else is going pretty well. Kevin has been in town this week and has catered to my every whim, just as he should. We've been getting down to the store almost everyday to say hello and try to stay in touch with current events there. Vicki has been getting out and about a little more as she gets more confident in my ability to make it on my own for a few hours. Looks like she's scheduled for her gall bladder removal in early June - she should be out of commission for a week or so.
______________________________________________
FROM VICKI: Hi everyone. Yes indeed. In case you were wondering, I have scheduled my surgery for June 5, with a pre-op consult and physical on May 30. I wanted to wait till after my birthday, so I could #1, enjoy that and #2, give John a little more time to get stronger. By then, we will have lived for a couple of weeks without any brotherly support and visitation (Cosgrove brothers that is, my brother Jay and his wife Sarah, continue to be a massive help with every single type of support you could possibly imagine). I believe that John will be good to fix ME breakfast for a couple of days while I get over the soreness of orthroscopic gall bladderectomy. Probably not the right term for it, but it made me giggle a little bit.
We might have written about this before, but John will have his first appointment with the Kaiser Oncologist (We call him Chemo Kaufman) on May 17th. At that time, I assume (while continuing to manage expectation as much as possible) we'll find out what the course of treatment for John is going to be. I hope to find out how much, how long, how sick it will make him (0r not) and how we measure success in the future. I hope to know how often John will have to be tested, scanned, checked up or what we will have to do to stay on top of any future cancer and if there will ever be a time when we can be less vigilant about his health and go about living normally again, without waiting for the next phase of being a cancer patient/survivor.
We have been writing less, as there is less to impart to everyone at the moment. The focus at David Street now is to work on getting John stronger and fatter. Period. There is a fine balance between calories in and calories out. Many of us wish we had to put on weight, like John does. We would be happy with even 5 or 10 lbs right now, but ultimately, it would be good to see 40 lbs on him. I'd be happy to give him 40 of my excess pounds, as would alot of people I know. While that's not going to happen, this low fat eating has helped me drop of few of those campaign pounds that I put on last year.
It's been great to get out and about a little bit in the last couple of weeks. It was a wonderful reunion on Wednesday when I went into San Francisco to see Governor Dean at the Palace Hotel. I've posted some pictures of the event if you're interested in them. So great to see so many of the people I've been working with over the last 4 years and even better to know that they're all still active and working to make a better country for us and our kids. Many thanks to Howard Dean for creating this extraordinary community of activists who work with and for each other.
Special thanks today go to Art Torres and Christine P. Thanks for your support and your offers of help. I will remember to take you up on them at the first sign of needing to. Once we get thru this particular holding pattern, it is very possible that you'll be hearing from us.
Over n out for now. We'll try to be better at posting. Thank you all for checking in. It means alot to all of us.
Peace, hope and love
Vicki
Sunday, May 06, 2007
Living with Cancer
Tonite, we are watching an amazing program on the Discovery Channel. Ted Koppel is doing a very special show on Living with Cancer. They announced that they will be showing the program again tomorrow night and I hope everyone can spend the evening watching it.
One of the early points of the program is that almost everyone is living with cancer in some degree. With 600,000 people dying from this disease every year, all of us have been touched in some way and that makes this program that much more important.
Right now, it's very personal to the Cosgroves of David Street. We are literally, living with cancer, right in our house. Yes, there is a chance that we kicked it's ugly ass out of here, but we are surely going to be living with the fears and treatments that cancer brings for at least some amount of time.
If you are of a political nature, you know that Elizabeth Edwards, wife of Presidential candidate John, is living with cancer. She is on the program, as is Lance Armstrong and Leroy Siever, a good friend of Mr Koppel's. He started a blog some time ago called My Cancer, and John and I are looking forward to reading it and looking over his journey and the journey of his readers and writers.
If you've every wondered what kind of things a family goes thru when they are diagnosed, what kinds of questions you ask yourself, how ya figure out how to talk to people....all kinds of things, this is a great show. It will put a little spotlight on some of the things that we are just unable to talk about up to this point. There have been many "Aha moments" for us.
I've been looking forward to seeing this show for a while (altho I do miss Planet Earth, which seems to be over now). I had no idea how good it would be. I hope you'll get a chance to tune it in.
Vicki
One of the early points of the program is that almost everyone is living with cancer in some degree. With 600,000 people dying from this disease every year, all of us have been touched in some way and that makes this program that much more important.
Right now, it's very personal to the Cosgroves of David Street. We are literally, living with cancer, right in our house. Yes, there is a chance that we kicked it's ugly ass out of here, but we are surely going to be living with the fears and treatments that cancer brings for at least some amount of time.
If you are of a political nature, you know that Elizabeth Edwards, wife of Presidential candidate John, is living with cancer. She is on the program, as is Lance Armstrong and Leroy Siever, a good friend of Mr Koppel's. He started a blog some time ago called My Cancer, and John and I are looking forward to reading it and looking over his journey and the journey of his readers and writers.
If you've every wondered what kind of things a family goes thru when they are diagnosed, what kinds of questions you ask yourself, how ya figure out how to talk to people....all kinds of things, this is a great show. It will put a little spotlight on some of the things that we are just unable to talk about up to this point. There have been many "Aha moments" for us.
I've been looking forward to seeing this show for a while (altho I do miss Planet Earth, which seems to be over now). I had no idea how good it would be. I hope you'll get a chance to tune it in.
Vicki
Saturday, May 05, 2007
More haiku
Unfortunately went a little backwards on weight for a while. Thursday afternoon I took on an ever so slight fever - seems like 3 or 4 months ago that 100 degrees would have barely slowed me down but this particular episode sucked. And by the time weigh-in came the next morning, I had to start all over on my weight. So I ate like there was no tomorrow on Friday and got back on the Half-Pound-A-Day train.
Also took a shower for the first time since the 18th. How great was that! No more sponge bath.
The following three Haikus were written for Vicki. I wrote them in time order of our illnesses. Vicki got sick first, and I was holding off doing anything about myself hoping that she'd get all fixed up first. Then when I started turning yellow..........well, you'll get the idea.
Also took a shower for the first time since the 18th. How great was that! No more sponge bath.
The following three Haikus were written for Vicki. I wrote them in time order of our illnesses. Vicki got sick first, and I was holding off doing anything about myself hoping that she'd get all fixed up first. Then when I started turning yellow..........well, you'll get the idea.
Trade sympathy pains;
24 year partnership.
Who's sickest? I win!
24 year partnership.
Who's sickest? I win!
And in the lead up to the all the decisions and plans for the surgery and recovery.
War of strength and fear,
plan for worst, hope for the best.
roller coaster ride.
plan for worst, hope for the best.
roller coaster ride.
And during my stay.
Have you washed your hands?
My number 1 advocate,
tireless guardian.
My number 1 advocate,
tireless guardian.
My brother Mike from Florida left this morning (first time without an out of town brother in 3 weeks- feels weird). He stayed with one of my in town brothers and enjoyed taking walks with Jay and the four legged. He left this one.
Going for a walk
Four balls of furry lightning
eat the hill for lunch.
Thanks for checking in,
John
Four balls of furry lightning
eat the hill for lunch.
Thanks for checking in,
John
Thursday, May 03, 2007
From John - Follow up with Chang
I've missed Dr. Chang's early morning daily visits. He walked in, briskly disposed of the niceties, and with hardly a fair thee well, slipped on some gloves and started to give me pain. He took off the tape over my last remaining drainage tube (the tape over the recently re-grown belly hair) cut the sutures holding the tube in, and pulled the thing out. My eyes were looking anywhere but at the deed, but my posse says it was pretty neat - it just kept on coming for more length than anyone anticipated. Then he moved on to the staples. I thanked him because it looks like it was sewn up a little unevenly and it appears as though he were trying to do something for my persistent slice (a golf malady). Those came out with not too much pain, he said that I could certainly take a shower, just give the drainage hole a day or two to close up and pat dry the area of the feeding tube when done. Yahoo.
Then we talked about the pathology report on the removed parts. There is plenty of clean margins on the stuff, lots of room between the spot and the edges. He says that's good, real good. They did find cancer cells on 2 of the 12 lymph nodes removed. That still sounds awful to me, but Chang says that everything is packed so close in there that they often find more than that ratio in that area and it isn't a big problem - they'd be administering chemo if they had found 0 out of 12. So, I'm scheduled to meet with the new Doctor in Charge, Chemo Kaufman, on the 17th.
The deal is to continue to gain weight and strength, take lots of naps, little walks, showers, read, and relax. I think I'll go get a snack and a nap.
John
Then we talked about the pathology report on the removed parts. There is plenty of clean margins on the stuff, lots of room between the spot and the edges. He says that's good, real good. They did find cancer cells on 2 of the 12 lymph nodes removed. That still sounds awful to me, but Chang says that everything is packed so close in there that they often find more than that ratio in that area and it isn't a big problem - they'd be administering chemo if they had found 0 out of 12. So, I'm scheduled to meet with the new Doctor in Charge, Chemo Kaufman, on the 17th.
The deal is to continue to gain weight and strength, take lots of naps, little walks, showers, read, and relax. I think I'll go get a snack and a nap.
John
Wednesday, May 02, 2007
From John - Haiku
Another day, another 1/2 pound. I love to will the scale to say the right number in the morning and it does.
My Brother posted a beautiful Haiku on the event of springing me from the hospital. I hear he had some help with one of the lines - you be the judge. We all got started on haiku's some years back following a brother's golf outing. Mike started it and a lot of them had inside jokes, but it has steamrolled from there to a means of commemorating some event in one or all of our lives. Here's some that I've been working on for a while.
This one honors my Doc for his matter-of-fact manner of identifying and getting to the kernel of the problem, not a hem or a haw to be found.
My Brother posted a beautiful Haiku on the event of springing me from the hospital. I hear he had some help with one of the lines - you be the judge. We all got started on haiku's some years back following a brother's golf outing. Mike started it and a lot of them had inside jokes, but it has steamrolled from there to a means of commemorating some event in one or all of our lives. Here's some that I've been working on for a while.
This one honors my Doc for his matter-of-fact manner of identifying and getting to the kernel of the problem, not a hem or a haw to be found.
Dr. CK Chang
Pancreatic cancer,
Whippled, resected.
Pancreatic cancer,
Whippled, resected.
And for me and my current concern (see Vicki's description of eating everything in sight).
Hibernating bear,
too thin from too long asleep.
Flowers bloom, wake up!
too thin from too long asleep.
Flowers bloom, wake up!
And for my brothers. What a blessing they have been, going shopping, taking out the trash, quizzing the nurses and doctors, shooing out excess visitors, spending time with Elliot, etc, etc.
Parade of brothers.
No task too small or complex;
No better stand-ins.
No golf bags in tow,
just hold hands with me and mine.
Some scotch wouldn't hurt.
No task too small or complex;
No better stand-ins.
No golf bags in tow,
just hold hands with me and mine.
Some scotch wouldn't hurt.
Dave and Kathy continue to withhold information about any problems at the restaurant. I know they must be looking forward to my return but won't even discuss it until I can go 4 hours without a nap. Another integral part of my life that someone I love has eliminated from my list of concerns.
How fares the restaurant?
None of my concern 'til well.
Partners soothe my fears.
None of my concern 'til well.
Partners soothe my fears.
And of course my daughter Taryn. I'll never be able to say enough. Like a rock through even the worst days.
Everyone chips in,
Who tamps down my fever'd dreams?
Taryn Nightingale.
I think that's it for now - it's time for a nap.
Who tamps down my fever'd dreams?
Taryn Nightingale.
I think that's it for now - it's time for a nap.
Tuesday, May 01, 2007
From Vicki - A half a pound at a time
As we continue to settle in to this strange new normal, the focus every day is on making sure John gets alot of calories, without too much fat. As much as his body needs a little more "subcutaneousness", he is now without a gall bladder, which is the thing that helps to process fats.
Much of our time each day is centered around what is the next thing to fix to eat.
John wakes to a small bowl of grits, or maybe some oatmeal. Then there is usually some kind of egg scramble, sometimes wrapped in a tortilla or sometimes with toast. Next we like to get in a fruit smoothie, then later a little snack like string cheese or crackers, then there is dinner. At nite, there is the feeding tube in his side where he recieves 2 cans of Peptomine which gives him an extra 500 calories a day. He despises being tethered to that confounded machine, but he's also impatient to get his strength back, so he grudgingly allows Taryn or me to get him hooked up each night.
I did notice at dinner tonite (Thank you Carlene, the spaghetti was FABULOUS) that his face looks like it's filled out a little more and he is starting to look a little less scary.
John is getting around more and more every day. He takes one 1/2 mile walk each morning after getting unhooked from the machine and that is tiring him out pretty much for the rest of the day. Several long naps each day, allow him to get up and torment anyone that's near and not doing something useful.
Our good friend Jim Fox is over tonite, sharing dinner with us and helping with some plumbing things. He brought his cribbage board, but I don't see that happening any time tonite. He promises us some split pea soup for Saturday nite's dinner and we're looking forward to that, always happy to have our own personal "Santa" visit David Street.
The post op follow up appointment with the surgeon, Dr CK Chang, will be on Thursday morning at 9am. At this appointment, we hope the staples will be removed from John's belly, we hope to have at least 1 tube removed and we hope to get a clearer picture of what and when the cancer treatments are going to be. As with everything else and as I've written about several times before, we are again managing expectations.
As I mentioned Sunday, the California Democratic Party convention was this last weekend in San Diego. My friend and proxy to the convention, Karla Goodbody, called on Saturday to let me know that the chair of the party, Art Torres, mentioned our situation to the entire delegation during a general session on Saturday morning. Again, another example of good Democrats, coming together to turn philosophy into reality and really live the idea that we are all in this together. How amazing it's been to see this happen and how lucky John and I are that we are the beneficiaries of this incredible generosity.
I hope you'll click the bold link above and note my response to babaloo's blog post from today. Our country is besieged with a horrible health care system that does NOT take care of everyone. I think it's important to use our situation here to highlight the needs of so many to get access to good, affordable health care. It was not so long ago that this Cosgrove family went for 3 years without insurance. While we still have many bills to pay during this anxious time, it was good that there was never a time that getting treatment was going to be impossible for John. 45 million Americans do not have the same choices that John had.
Imagine finding out that you have a life threatening disease, then realizing that getting no treatment that could help you live, is a serious option for dealing with your problem. What a horror. Martin Luther King Jr says, "Of all forms of inequity, injustice in health care is the most shocking and the most inhumane."
Our current health care system is COSTING tax paying Americans billions of dollars every year. California is working on legislation that would get Health Care for All. Of course, insurance companies are probably going to fight this tooth and nail, with every excuse they can think of to continue to keep gouging the American public, (hence the need, also, for Clean Money), but this legislation would be a good start toward getting more people with the ability to have safe, affordable health care. I hope you'll take a minute and look into it and think about the possibilities.
Peace, love, hope & gratitude
Thank you for stopping by
Vicki
Much of our time each day is centered around what is the next thing to fix to eat.
John wakes to a small bowl of grits, or maybe some oatmeal. Then there is usually some kind of egg scramble, sometimes wrapped in a tortilla or sometimes with toast. Next we like to get in a fruit smoothie, then later a little snack like string cheese or crackers, then there is dinner. At nite, there is the feeding tube in his side where he recieves 2 cans of Peptomine which gives him an extra 500 calories a day. He despises being tethered to that confounded machine, but he's also impatient to get his strength back, so he grudgingly allows Taryn or me to get him hooked up each night.
I did notice at dinner tonite (Thank you Carlene, the spaghetti was FABULOUS) that his face looks like it's filled out a little more and he is starting to look a little less scary.
John is getting around more and more every day. He takes one 1/2 mile walk each morning after getting unhooked from the machine and that is tiring him out pretty much for the rest of the day. Several long naps each day, allow him to get up and torment anyone that's near and not doing something useful.
Our good friend Jim Fox is over tonite, sharing dinner with us and helping with some plumbing things. He brought his cribbage board, but I don't see that happening any time tonite. He promises us some split pea soup for Saturday nite's dinner and we're looking forward to that, always happy to have our own personal "Santa" visit David Street.
The post op follow up appointment with the surgeon, Dr CK Chang, will be on Thursday morning at 9am. At this appointment, we hope the staples will be removed from John's belly, we hope to have at least 1 tube removed and we hope to get a clearer picture of what and when the cancer treatments are going to be. As with everything else and as I've written about several times before, we are again managing expectations.
As I mentioned Sunday, the California Democratic Party convention was this last weekend in San Diego. My friend and proxy to the convention, Karla Goodbody, called on Saturday to let me know that the chair of the party, Art Torres, mentioned our situation to the entire delegation during a general session on Saturday morning. Again, another example of good Democrats, coming together to turn philosophy into reality and really live the idea that we are all in this together. How amazing it's been to see this happen and how lucky John and I are that we are the beneficiaries of this incredible generosity.
I hope you'll click the bold link above and note my response to babaloo's blog post from today. Our country is besieged with a horrible health care system that does NOT take care of everyone. I think it's important to use our situation here to highlight the needs of so many to get access to good, affordable health care. It was not so long ago that this Cosgrove family went for 3 years without insurance. While we still have many bills to pay during this anxious time, it was good that there was never a time that getting treatment was going to be impossible for John. 45 million Americans do not have the same choices that John had.
Imagine finding out that you have a life threatening disease, then realizing that getting no treatment that could help you live, is a serious option for dealing with your problem. What a horror. Martin Luther King Jr says, "Of all forms of inequity, injustice in health care is the most shocking and the most inhumane."
Our current health care system is COSTING tax paying Americans billions of dollars every year. California is working on legislation that would get Health Care for All. Of course, insurance companies are probably going to fight this tooth and nail, with every excuse they can think of to continue to keep gouging the American public, (hence the need, also, for Clean Money), but this legislation would be a good start toward getting more people with the ability to have safe, affordable health care. I hope you'll take a minute and look into it and think about the possibilities.
Peace, love, hope & gratitude
Thank you for stopping by
Vicki
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