We Remember

Today I received this as an email that asked that I forward it on to everyone. I'm not huge on burgeoning people's emails with chain mails, so I thought I would put it here because it is a great sentiment.

WE REMEMBER

All you are asked to do is keep this circulating.
Even if it's to one more person.

In memory of anyone you know that has been struck by cancer.



A Candle Loses Nothing by Lighting Another Candle.

Please Keep These Candles Going!

This one, I do ask that you send on.

We hope that all who are still tuned in are doing well. We are still getting on with life, which is good. There are many challenges, but nothing we can't handle as long as we have our health.

In 2007, we were anxious for it to be 2008. Now that we're here, it's good, but we are now looking forward to 1-20-09 and the blessed end to a completely different kind of nightmare.

Be well and continue to work for peace.

Celebrating survival - One year in

I don't know if anyone is still listening or checking in. I couldn't blame you if you didn't because we don't keep up. After looking down the abyss of life and death, we've been trying to concentrate on life and living and it's been a good thing.

John is back to work. Taryn is back to school (and still working a ton), Vicki got a job working as Executive Assistant for the President of the Boys & Girls Clubs of Oakland, Elliot got his braces off and one step at a time, life is going back to some kind of normal. We think daily about how very lucky we are and very often, my last thought before I go to sleep is "life is good".

John has had 2 scans since the end of chemo and the last one, 2 weeks ago, showed that he has a case of pancreatitis, but it also shows that he has no cancer. What a blessing! We can deal with pancreatitis, we can deal with the nutritional problems of having a partial pancreas and yes, we could probably deal with more cancer, but it sure feels good not to have to.

In honor of cancer surivors and victims everywhere, alot of people do alot of walking and we have a good friend who is training for a marathon Walk for A Cure. John (and his brothers) are big on the haikus and he has written a couple lately so I wanted to post them for you all. They made me cry and I'm pretty sure they will touch others hearts as well.

Marathon for the Cure

Searching for a cure.
Survivors, victims and us.
It's been a good run.

Anniversary

Today, one year past,
Chang gave me a second chance.
And my brothers came.

Continued love and gratitude
Vicki

Transition #1

Like Lance Armstrong, I believe it's time we get insistent on finding out the causes of cancer and getting those causes under control. I know this is a big problem for those that think that corporations should have all the rights of a person, but it's more and more clear as time goes by that corporations have no humanity, no soul and they are extremely short sighted in their quest for profit only. I mean, afterall, if what they (say, tobacco companies) do kill off their customers in the long run, then how do they sustain themselves? I guess they just go after our kids so they can kill off the next generation too eh?

Why don't they care? Well, corporations have no hearts and no capacity for caring. As the fragile humans that we are, we should want them somehow kept in check. How that happens, in this day and age is beyond me, but the fact that countless corporations are ALLOWED to go out and poison the world is incomprehensible to me. Why does it have to be proven that what they do causes harm? Why shouldn't it be that THEY HAVE TO PROVE that what they do causes NO harm BEFORE they are allowed to do it (whatever "it" is)? Capitialism at it's finest! Bah!

Too many people have cancer. WAY more people die of cancer in this country every single year, than all the people that have died in the 9/11 attacks and all the immoral killing that has gone on since. Why are we not waging war on cancer rather than on brown people? What happened to the good of the government that I remember growing up with as a child, where monopolies were illegal and spying on citizens was cause for impeachment? What happened to leaders that united our country around sacrifice and true love of country and those that defended it? Why CAN'T we all agree that getting rid of cancer and providing health care for all people would be so much more productive than spending all our resources on bombs and guns? Something in my soul tells me that something is terribly wrong with this and that if we don't do something about it, the planet will finally spit us all out so that she can survive. That's not what I want for my kids and all their kids to come. Maybe cancer will just have to knock at every door to get people to wake up, but will it be too late then?

The Health Industry's Secret History of Delaying the Fight Against Cancer

In her new book, Devra Davis exposes scientists and government officials who have worked to downplay or dismiss preventable causes of cancer.

Davis is also arguing that we need to dislodge the belief in the existence of incontrovertible scientific proof from the public and legal mind as well; after all, most scientists would be the last to say their conclusions represented some forever-undeniable truth. "If we insist on having at hand absolute proof that harm has happened before we move to prevent or control damage," Davis writes, "we are dooming future generations." But the time is right, she says, for a paradigm shift in how we think about cancer; and she argues that we are beginning to make major breakthroughs -- in part due to the help of industry insiders -- that can help bring about this fundamental change.

Let's just hope so huh?

In the meantime, I've decided not to give those tobacco companies any more of the little money I have. On December 1st, I quit smoking after almost 40 years. I've been pretty much a closet smoker for quite a while and I'd cut so far back, that quitting is the only logical next step. They say that no matter when you quit, you start getting healthier in the first few days. I'm not sure about that yet, but I'm open to feeling it when I get over "jonesing" for my next American Spirit Light Menthol cigarette.

Anyway, we have the scientific tools to reveal the connection between the environment and disease in a way never before possible.

We will probably have to wait till there is new leadership in this country, but we can start now, figuring out ways to demand that we are protected from pollution and that we join the rest of the world in figuring out how we can all prevent the looming climate crisis.

Oh, and can we just stop with all the wars?

So much to be thankful for

WE MADE IT! John's chemo is over. Tomorrow it will have been 2 weeks since his last infusion and the way he feels seems right on schedule with the way he's felt for the last 6 months. With the nadir (low point) for Gemzar being 10-14 days after infusion, I think we can now count on him beginning to get back to his normal self. Since the surgery, he's gained about 25 lbs and he still has that much more to go, but without that constant poisoning going into is bloodstream, it should go alot quicker now. (Mmmm....baby back ribs!!!)

No more needle pokes every week. No more flu like symptoms 24/7. No more achy joints for him. No more nausea medication. No more burning veins from that nasty chemical they put in him every week. NO MORE!!

Soon 2007 will be over. Before that happens (December 15), John will get a scan of his body to check to make sure he's still clear of cancer. Once we get the word, we are going to really look forward to the new year, a new beginning and a new outlook on life. It's been a tough year, on so many levels and while I'm not one that usually celebrates the passage of time, I'm going to take personal privilege in getting a great deal of pleasure seeing the end of this year.

I hope anyone that's still reading this has had a great Thanksgiving. We sure did, and the best gift I can think of for Christmas is the gift of John's health.

I can't close without once again taking the chance to thank everyone who helped us get through this episode in our lives. You all know who you are and I love you!

Peace
Vicki

In sickness & in health - in dark clouds and sunshine

Again, it's been a long time since there has been a post here and it seems it must be time to give an update to anyone who's still paying attention. I know that we've promised to try to be better about posting, but for many reasons, we just don't do it.

Our last post was on June 16th -- Taryn's 21st birthday. A fairly huge milestone in the life of a family. Since that time we've also "celebrated" our 24th wedding anniversary. Another pretty major milestone. I quoted celebrated because in reality, we celebrated that day by going to the chemo department of the hospital and getting John's chemo treatment that celebrated his halfway point in the whole thing. Yet another milestone.

There have been ups & downs. That much is probably obvious. This chemo thing is like a dark cloud that hangs over us all the time, with a few rays of sunshine that occasionally break thru. We are happy for those rays, no doubt. I bask in them when they shine because so much of the time the dark cloud feels so oppressive. John feels like shit much of the time, I get reclusive and a little morose and nobody feels like any fun to be around at all. Taryn & Elliot are constant rays of sunshine so I am always looking for ways to hang out with them and enjoy their youthful optimism and joyful personalities.

Before I forget (which I've done for far too long), I would like to send a very special thanks to the Hahn Family and the IOIGT (Inlaw Outlaw Invitational Golf Tournament). My Dad's wife, my "mother", comes out of the Hahn family. They are a huge and fabulous family and when my Dad married Kathy, we became a part of this ginormous family. The last time we all got together in Colorado, there were more than 100 of us. During their golf tournament/family reunion this summer, they did their usual fundraising by auctioning off items that they had made during the year. This year, they kindly made us the recipient of their fundraising and their help was tremendously appreciated. John and I thank all of you that used your great talents to make the beautiful items you always make and we thank you also for keeping us in your thoughts and prayers all these long months. This blog post is dedicated to each of you. We love you and appreciate all you've given us. Dorothy & Keith, Mary, Helen & Larry, Norma & Ken, Doris & Mike, Joe & Shirley, Bill & Mary, Mike & Midge, Dan & Judy and Debbie & Mark and all of their children, grandchildren and great grandchildren......Thank you so much.

Now....John starts the last half of his chemo treatments on Tuesday. 3 more months, 9 more treatments, and who knows HOW many more needle pokes. This last (third) month of treatment, John didn't wind up in the hospital. That was a beautiful thing and we hope we can keep that going for the next 3 months. They've started giving him weekly injections of something called Procrit, which helps build up his blood cells and actually DOES make him feel better. We hope this treatment and it's improvement continues.

During the second month of chemo, John came down with pancreatitis again. He ended up in the hospital for about 5 days being starved again, much like what happened before the whipple surgery. He lost an awful lot of ground in his weight gain and he is catching back up again very, very slowly. During that stay, he recieved a cat scan and we were extremely happy and relieved to know that at this time, there is still nothing remarkable on his scans!!!! I fretted an awful lot that they weren't doing any scans to make sure that he was still cancer free. John thinks I'm silly for that, but that's who I am, what can I say.

Still....being able to say that John is CANCER FREE is one of those rays of sunshine in our lives.

Before this post gets too long, I will leave you all with a request.

Please go see the movie SiCKO. Michael Moore does a fabulous job of questioning our health care system in the United States. Whatever you think of Michael Moore, this movie and its topic is a great equalizer. Each of us, no matter what side of the political spectrum we reside on, needs health care and more and more Americans are fed up with a system that seems to only benefit the already ultra rich insurance companies and their CEO's at the expense of the health of patients. Every single industrialized nation on this planet, other than the US, has national health care. In France, England, Costra Rica and even in Cuba, you can go to the Doctor without worrying that the next time you turn around you could go bankrupt or lose your house or be unable to buy the drugs or get the treatment that can keep you alive. There are no issues with pre existing conditions. There is no denials of care. There is only CARE. Why can't we have this in America? What do you think?

Peace, love, gratitude and above all, health......
Vicki

Flu Like Symptoms

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

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

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

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.

Better Late than never?

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).

Happy Mother's Day

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

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

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.

Trade sympathy pains;
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.

And during my stay.

Have you washed your hands?
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

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

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.

Dr. CK Chang
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!

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.

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.

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.

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

From Vicki - Settling In

It's almost difficult to figure out how to begin this post. Life has been altered so completely for each of us, in separate ways, and yet here we all are again under the same roof.

There is no question that this is the place that John needs to be to begin the next phase of healing. He's already eating meals, walking around, figuring out what he should do with the small bursts of energy he gets. The hospital, as my Mom always used to say, is no place for sick people. At one point, a Dr even said to us that they like to get people out of there as soon as possible to lower the risk of infection.

So home is good. John still has 2 tubes sticking out of his sides. One side for drainage and one side for feeding. There is no possible way he can consume enough calories to get better, so at nite, he's hooked up to a feeding tube that augments his caloric intake. I think it pisses him off mostly, to still have to be tethered to this machine, but I know he wants to get his weight back and even more so, his strength.

Friday was an insane kind of day. With discharge from the hospital imminent, we had to get a hospital type bed in the house so that he could remain at the 30 degree angle that is most comfortable for his "zipper" on his belly. Elliot's face was so swollen from poison oak, he had to go to the Dr and all this was happening while Brother Mike was arriving at the Oakland airport. It's taken us all weekend just to get settled in and to find a couple of moments just to stop moving and getting things comfortable for all residents of David St.

Brother Steve has left for Chicago and Mike takes his place as the brother in charge. Kevin will be here next....I think on Friday and there's always the fun couple of days in between where there are 2 brothers visiting and doting on our family. Taryn & Elliot seem to be basking in the attention of their Uncles.

Elliot is now much better after treatments with some steroids. He can open both eyes and he can go back to school tomorrow.....further signs of things settling into some kind of "new normal". Taryn is happy to be back home now and has resumed most of her normal activities with her friends. She'll have to be back to work this week...one more sign of settling.

So many of my friends were gone this weekend. Gone to San Diego to the California Democratic convention. I was supposed to be there with them, but this time, it was better for me to stay home. So many people were so nice to call me from San Diego and report in. Martha, Penny, Matt, Eden, Bill E, Sharon and Johnie.....it was so great to hear from you and hear your impressions of everything. That was a perfect substitute for not being there and I appreciated it so much. I look forward to visiting with you all and hearing about everything that happened.

In the meantime, it's early to rise Monday tomorrow and time to sleep. Thanks to all for checking in and keeping track of the progress here in the Cosgrove house. It's really good to know you're all out there.

Peace
Vicki

From Vicki - HE IS SPRUNG!

From Brother Steve:

HE IS SPRUNG!

Details to follow, driving to the house now.

Clothed and dignified
Smiles all around, Chang is King
West wind takes us home

The Cosgrove Brothers have a thing with Haiku. It's a beautiful thing.

I've been running around, trying to get John a bed, get Elliot to the Dr for his poison oak (it's really horrendous), getting things picked up and ready for arrival and making sure everything is coordinated with picking up brother Michael. I might say TGIF, but mostly I'm thinking TGHCH (thank goodness he's coming home). Now we can think about how to fatten up his battered, bony body (he weighed 153 this morning) and build his strength in a larger venue than that little hospital room. Not to mention doing away with the 30 minute drive every time we want to see him or come home.

I should say that I think that Kaiser Walnut Creek absolutely is DA BOMB. John had a private room the entire time he was there, with enough room for Taryn to have a little bed in the corner and a private bathroom. The nurses were, for the most part, extremely attentive and almost always available for any call. Of course I wasn't there 24/7, and Taryn might have issues with the previous statement, but from what I could see, I thought everyone there was fabulous, and hell, they saved my husbands life so at this moment I see not one thing to complain about.

Still no report from pathology and we are all working to manage our expectations about what will come after this initial healing phase. As always, we will continue to hope for the very best outcome possible.

Today, special thanks are to Kaiser Walnut Creek for all the reasons mentioned above and mostly to Dr CK Chang. He made this happen so fast that it really has been like a tsunami, and we are grateful for that.

With love and gratitude to everyone reading
Vicki

From Taryn - From the Pope Himself.

I finally feel well enough to post. What a wild rollercoaster ride this has been – reminding me that despite my current roaring hunger, joie de vive, and joyful disregard of what can most kindly be termed ‘hospital hair’, there may be a downturn coming – or not (managing my expectations). It was less than 40 days ago that I went to the doctor complaining about my loss of weight and appetite, and here I am (down another 10 or 12 pounds) preparing for another transition. What an incredible joy to really consider further into the future than the next change of drugs, nurses, pains, fear, or what new indignity they have planned for my battered body.

I know that Vicki has said it a million times for all of us, and Taryn has added her own, but now for my thanks. I feel like I’m on some wild tsunami flood of love and good wishes and prayers from here to Nebraska and Colorado and Illinois and Virginia and so many other places, offers and deliveries of words and flowers and cards and food (for everyone but me) and hugs and quiet unassuming company and pitching in. On the few occasions I thought to ask Vicki about one thing or another the incredible relief of hearing that ‘you don’t have to worry about anything other than getting well, __________ is taking care of that’. And fill in the blank with your name – If you care enough to be reading this, you’ve done something for me and mine that I won’t forget.

And now, I think its time for a nap.