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.

Expectations Exceeded

Managing expectations and dealing with the effects of let downs has been a rough road for all of us. I can't imagine that the waiting is not most painful for my dad who for eight days now has had the ever painful Nasal-Gastric tube coming out of his nose. Imagine having the biggest buger in the world and then it has some needles sticking out into your throat. For the past couple of days, we knew that the end was near. That soon, that tube would be out but that time just couldn't come fast enough. Until this morning. CK Chang came in at his usual 7:15. I took special care to be awake for that visit!

Without so much as even a "Good Morning" the surgeon took off the bandages covering my dad's incision. He noted briefly that the incision looks good (I guess that all depends on your perspective). Then he said that today sometime we could probably take out the NG tube. I asked what time that would be and no sooner had the words come out, he was over atop my dad taking the tape off his nose. He handed him some tissue warning that Dad would need to blow his nose in a few seconds. Before we were even confident of what was happening, the tube was out and in the garbage can. Whoa DUDE!!!!!!!

With gratitude and excitement, Dad got up and looked in the mirror. He was finally minus that awful trunk! He had some breakfast and reveled in the ease of eating without the tube getting in the way. At last, all the excitement of the morning and worn him down and he got into bed for a little nap and sent me down here for some coffee and a post. Before I left we had a little moment, accompanied by tears and everything. The relief of it all and the thrill of another huge step forward might have been a little much for 7:30 and not a lot of sleep.

Uncle Steve had come up early so that he could be present during Chang's visit. I was so glad, as always to have him there, whether for comfort, for wisdom or comedic relief. There is nothing like having a team of uncles around to make sure that every need is more than taken care of.

Starts & Stops

He didn't get his zebra steak (except in his dream) and all the rest didn't go as well as we'd hoped either. John is having some trouble getting the food to go down, even if it IS liquid.

We are once again in the situation of having to manage expectations. It's amazing how much that factors into every aspect of our lives these days. Our expectations of how the recovery would go, of each other, of every person involved in caring for John and for the rest of us, of ourselves, of nurses and doctors. It's nice in a way that we have this phrase coined and that we can go back to it often and remind ourselves not to get too down about setbacks I guess. It seems that daily, one of us is saying it to another to help bouy up feelings.

Tomorrow will be better......that's another thing we often hear and say.

One thing that we can be sure of is that even tho there are setbacks, each day brings John closer to being healed and brings him closer to that zebra steak or meat loaf sandwich or that plate of ribs or that manhatten. When one has their guts completely rearranged, we can't expect things to get back to normal overnight, can we?

Special Thanks tonite to Dad and Kathy for filling in the long hours at the Ice Creamery for John and keeping things running so smooth. They do it without complaint and with the deepest compassion for all that John is going thru. If you're in Castro Valley, go by and see them. Tell them thanks for all they do for us. They deserve it.

Special Thanks also to Zuraida for doing the same thing. Closing the restaurant and working long hours to fill in for John. He is comforted to know that it's all being taken care of and I guarantee that he can't wait to get back in there so you can go home at nite.

Peace, love, gratitude & hope (and managing expectations)
Vicki

Chasing down a Zebra?

Greetings.

For the first time since last Wednesday, my Dad and I got a full four hours of completely uninterrupted sleep. What a treat. Our night nurse was a good one and she took care of everything we needed and for the most part, let us sleep. Around 4:00 am, my Dad woke up talking about some crazy dream and saying that after that good sleep, he felt ready to go out and chase down a zebra for a nice juicy steak. I don't know what Zebra steak tastes like but that's what he wanted. I can't imagine that Uncle Morpheus had nothing to do with that.

On the subject of eating, as you are already informed by my mother, my Dad had his first meal in seven days! CK Chang came in and said that he was ready and if he holds down this food well, with no complaints and no nausea, the NG tube would be coming out by the end of the night. What a blessing that would be! After his breakfast of chicken broth, apple juice and awful tasting jello, he laid in bed and reported feeling full and empty at the same time. After fasting for seven days, and after taking out a piece of his stomach, I can't even imagine what that must feel like.

So things are looking up for Papa and that is just refreshing. I am happy to just be on the same planet as him and now I am overjoyed that his time on this planet is starting to be more enjoyable for him.

I do want to say some special thanks to the students and staff at the ROCK. I've always suspected that I had a great group of friends to call my family and that I could count on them no matter what. That suspicion as been proved true beyond what I could have ever imagined. The kindness and the love that has been lavished upon me and my family is simply overwhelming and one of the best gifts I could ever wish for. I love them all.

More will come as great things begin to develop.

Peace.
T

First Food

Hi Everyone,

A thousand apologies for not posting anything yesterday. I mostly stayed home taking care of a puny Elliot and I think exhaustion just caught up with me. For some reason, I felt like I'd been hit by a freight train and I just didn't seem to be able to put 2 thoughts together.

Today is better tho. Elliot feels better except for the case of poison oak he's got. I feel a little lighter and John just called and he feels good too. They've given him his first food this morning. Chicken broth, jello and apple juice. John just has to keep them down and they will take that confounded tube out of his nose.

Taryn spent the night at the hospital again last nite and since I only saw John for a short while yesterday, and since Taryn just called and says that she wants to post, I will leave this one short. Please stay tuned for Taryn's post in a just a little while.

Things are looking good tho. Today is a day to breathe a little easier. Thank goodness.

Peace, love, gratitude & hope
Vicki

This is what recovery looks like

Hi everyone,

Just popping in to pick up Elliot to take him to see his Dad and thought I'd send off a post letting you all know that recovery is finally taking place. It was a rough start, getting to where we are now, but all systems are going really well.

Subtractions: They took out one IV line in his right hand, the foley tube and the epidural (a couple of days ago). They are not monitoring his pulse on a constant basis now.

Additions: They began sending in a nutritious concoction today. It's not going in orally, but directly to his stomach. I suspect there are enzymes that will start his digestive system up so that the next step will be to take food orally.

There is still medicine for stomach acid, antibiotics and a host of other ones I can't remember right now, but they're all good and we seem to be done with the transfusions (never want to take anything for granted anymore).

Last Thursday, John was very uncomfortable in with the bed he was in. When he was in a different ward last week, there was a bed that automatically adjusted when you moved so that you didn't have alot of pressure points. John was feeling like he had no padding and he wanted one of those good beds. Then in all the urgency of his medical situation, it all kind of got forgotten....till today. Dr Chang finally ORDERED it. When it looked like they were going to continue to ignore the request, I just started making noise abouto it. Around noon, we finally talked them into bringing one of those good beds over. I even offered to roll it back to where it belonged if we could just HAVE it. Thankfully, I won't have to do that AND John is feeling so much more comfortable already.

All in all, I think this is what the recovery was supposed to look like on Friday and the weekend and now that the bleeding crisis is over, I think we're on the right track. The day they decide to take out the NG tube will be a day of HUGE celebration, but we still don't know when that might be yet.

With all my heart, I want to thank my wonderful daughter Taryn for her untiring dedication to being by her father's side. Her joyful presence is calming and healing for all of us and because of her efforts, I've been able to keep Elliot's life somewhat stable. She adores her Papa and her Papa tolerates her better than anyone. Oh to be 20 again and not have to worry too much about a full night's sleep. She does these long nights and always looks happy and refreshed in the morning and I'm deeply grateful to her for being SO there for all of us and for her Dad. Thank you Taryn, I love you so much.

Kinda crazy morning

Hey everyone,

Well, it was a bit of a crazy morning today. Taryn left John's side to go to church and I hadn't gotten ready to go to the hospital when John called and wanted to know about a drug they were giving him subcutaneously. He thought they were maybe giving him too much of something and he couldn't find the journal to check what had already been given. They also told him they were going to do some kind of test at nuclear radiology to see if they could pin down where there might be a leak or a bleed in his stomach.

What we suspect happened, is that the NG tube wasn't draining well, either due to cloggage or placement, but that stuff built up in his stomach to a point where it might have distended and torn the staples or something. Be mindful that this is just what we are piecing together and Dr Chang really can't be alot more sure about it without going in for another surgery, which is something we would like to try to avoid.

John has recieved 5 units of blood in the last 3 days. He's recieved a wide array of antibiotics to head off any infection. He recieves drugs to keep his digestive system working correctly, without any acid and he is starting a therapy to raise hemoglobin levels. I'm sure they would like to not have to give him any more blood, but if the red cells don't get up to a more comfortable level, they'll do it.

My brother Tod and his family have come by to visit and now we are all sitting in a coffee house across the street from the hospital while John gets all cleaned up. Everyone seems fairly relaxed and we have come up with a plan for keeping John company for the next 24 hours at least. Pat takes off for home in Virginia tomorrow so he is staying the night with his brother. It's a good thing that he'll have that time.

Special thanks today to Jay & Sarah Knudsen for providing Casa de la Knudsen for John's brothers and for feeding all of us such great dinners. Their home is so comfortable and it's great to have a roomy, hospitible home base to work from. Thanks also to Jay for walking Mati with his dogs and to Sarah for watching over both my "pups" (Mati & Elliot)

Special thanks also to Teri Cruz for bringing good food and keeping us nourished. We sometimes have a hard time tearing ourselves away to feed ourselves and it's so great of her to be so thoughtful in making sure we have real meals, even tho we eat them in the visiting/waiting room. That's becoming our new living room while we're here. It was nice of her to bring Taryn's High School group today too. They brought all of us a little bit of cheer and we liked it alot.

Dodging Bullets

Seems that tho we've felt a little like we can't catch a break lately, we do seem to be dodging the really big bullets that want to keep coming after us.

Thankfully, John stabalized last nite and today was a really good day for him. We are keeping our fingers crossed that the healing will continue exponentially every day from here forward.

When we all arrived, John and Taryn both were in good spirits. John looked much more healthy, lots of energy, pink skin and he was ready to be on the move. At some point during the day, I took Taryn out for coffee and John's restlessness overtook him and he got out of bed, out of the room and walked down the hallway! It's amazing how a short walk can be such a victory, but it made him feel so much better to have done it. He was tired and achy at the end of it and he was grateful for his little self medicating button when it was over, but everything continued to work just fine.

The NG tube still runs a little red. When they get the lab results tomorrow, they will decide if he needs another unit of blood. I don't want to venture a guess either way, but I know that if he needs it, he'll get it. In looking over all the other lab results this afternoon, we were happily astonished by all those astronomical numbers from last week getting down to almost normal levels since the surgery. What a blessing and what a relief!

I've been asked by more than a few people about the pathology reports. We won't have any information on any of that just yet. I think it will be another 4 or 5 days till we know anything about what kind of cancer they took out, what kind of steps need to be taken next, what oncologist we will be refered to or anything like that. Even while doing our best to continue to manage expectations, we are still hoping for only the best news. Personally, I am anxious to know what will come next, but I'm assured by the surgeon and by almost everyone else that this is the time for healing the surgery and the rest will come soon enough. I would like to have plenty of time to research any decisions that need to be made, without feeling that I have to rush into something just to get it going.

Nevertheless, John looked GREAT today. His face looked healthy and his smiles came frequently and easily. Young Elliot had his first chance to visit his Dad today and I think that made everyone feel great.

Special thanks this evening go to Pat for his intense concentration on the details of John's care and his absolute tenacity in demanding that things get done correctly and on time. Without that, the bullet we dodged might have been alot worse this time.

Super extra special thanks to Matt L, Babaloo and Eden J for even thinking of the kind of help they've given. Without you, the anxiety level (and alot of really ugly bullets in the form of bills) would be off the charts. I can't thank you enough for all you've done for my family. For the rest of my life I will be looking for ways to pay that kind of friendship and care forward.

Vicki

Hopes for a better day

Hi everyone, Since I still haven't left for the hospital, I thought I'd take a moment to let you know that all reports from Taryn sound very good for today. Drainage from the surgery seems to be going much better and other bodily functions seem to be normalizing to some degree. John is still due to recieve another unit of blood today, and they will continue that if needed.

Taryn said they both slept pretty well last nite and I could hear John talking in the background, which tells me that he must be feeling somewhat better. Brothers Pat & Steve are on their way to relieve Taryn for a while and I'll be there shortly too.

Yesterday John was taking no visitors and there was a big DO NOT DISTURB sign on the door to keep hospital staff out unless needed. That was a big help and I suspect that we are going to continue that for at least a couple of days. John cannot spend any energy on anything except healing right now, so if you plan to come to the hospital, please be mindful that you might only get to see me. I'm always up for anything tho, as you might know. =)

Special thanks today to all those that send prayers. I know many that read this blog "pray like crazy" (like my friend Karen says) and we are grateful for them. Special thanks also to Mary McNerney for taking the bold move of coming to visit me in a time of need. It was great to see you and I thank you for doing it. The flowers are still looking beautiful.

Over n out to the hospital.
Gratitude, hope, peace and love to you all.
Vicki

So the surgery was the easiest part...

I had plans this morning.

I was going to sleep well since I slept little in previous nights. I was going to make ice cream at the store and I was going to do my laundry. My mom called with news that would change my plans for the day. My dad did not have a good night and was definitely not having a good morning. During the night a number of awful things had happened such as vomiting and bleeding and this led to a very grumpy daddy. My mom was tired after having her own doctor's appointment and all the excitment over the success of the surgery had faded into fatigue, exhaustion and a general overwhelming gloom. So I dashed out here to save the day. Look what happens when my Dad goes 10 hours without his favorite daughter!

So the report is that the drain was not working just as it should and that led to his belly getting full and distending a little. Because everything is so raw and so tender from the pancreatitis and the surgery, any distension could easily cause the staples to tear the tissue in his gut (attractive, I know). There was tremendous fear of internal bleeding, infection and the horrible possiblilty of another surgery. Dr. Chang came and took care of things: giving him two pints of blood and two more on the way. He fixed the drain and things are moving much better now and that helps with the nausea.

My Uncle Steve is here and we are ever so grateful. My uncles are an ever flowing source of support, love and affection and their presence is always appreciated. I am going to stay here with my dad tonight and take care of his every need and we continue to pray that tomorrow will be a better day.

NOW they tell us....

I guess they actually told us, but I didn't hear the small fact about the surgery being the easy part and the recovery being quite a bit more difficult. Once again, we go back to one of my first posts about managing expectations. It's something we seem to have to deal with every minute of every day.

John had a difficult nite last nite and a hard day today. The NG tube (nasal gastro....or as we like to call it, the nose/gut tube) has had a hard time doing the drainage it was supposed to do and it has created quite a bit of havoc in how John feels in so many ways. He doesn't seem to need much morphine anymore, as the pain of the surgery is not so bad at the moment, but this stomach thing is pure hell.

Everyone is a little wrung out. Myself included, so I will let Taryn post in a moment and she can tell you how things went from her perspective. I wish I was able to post more up to the minute goings on, but there is no wireless in the hospital and sometimes it's just hard to tear ourselves away from John and making sure that he is doing ok every moment.

Special thanks today go to the Berkeley Zen Center for their dedicated chanting and meditating on John's behalf. Also to Jerry McNerney for his help and seeking help from his many supporters. I appreciate both so much and appreciate all of you reading this for your help and love and generosity. It's meant the world to us and made a big difference.

Peace, Love, Gratitude & Hope
Vicki

Let the Healing Begin!!

Everyone,

The good news is all. The surgery is done. The surgeon found no other signs of cancer any where else. John has been stitched back together and he is doing well. The surgery took 4.5 hours and C.K. Chang says it might have been even a little bit shorter if John's pancreas had not still been quite enflamed from the pancratits. But they worked around it, the tumor is going to pathology and we will know more about the status of the cancer when that gets back to us.

They saw NOTHING tho and the report is very very positive, as we hoped it would be. The news just could NOT BE BETTER!!!

We have suffered a long string of bad luck recently. I have told John that it would all be worth it if the final outcome was the GOOD luck. That has happened. We are so very grateful and happy right now.

My friends Marie and Jody are here and have been with me most of the morning. My Dad came and sat with us most of the morning as well. It was so great to share the good news with them and I will never forget them for being here for us. Looking forward to seeing Martha and Penny any moment.

Pat is standing watch at the hospital while us girls are at the coffee house tapping in to the hotspot.

THANK YOU THANK YOU for all your good thoughts and ju-ju and prayers and whatever else ya'll were sending our way. IT WORKED!!!

Peace, Love, Gratitude and HOPE!
Vicki

T-minus 9 or so hours

We've been to pre-op. We've filled out the forms. We've talked to Elliot's school and we've arranged his life for the next 5 days at least. We've paid all the bills for a while and nothing is hanging over our heads at the moment. (Again, so many thanks to all who've helped make that happen)

We've seen (rather graphically) all the pictures of what's going to happen and we've had a nice dinner and some wine, with some quiet jazz playing in the background. John's been to the Zen center for a little meditation. We've been recieving everyone's good ju-ju for the last 2 weeks. There is nothing more to do to prepare. Now there is just getting up at 4am to arrive at admitting at 5:30 in the morning.

John is walking around saying "Get it out! Get it the eff out!" We are packing up the bags of the unwanted visitor right now in preparation for kicking it's ass out of our house and out of our lives.

The surgeon has a very assuring manner and we've heard nothing but great things about his work. We feel lucky that the patient that was supposed to have the same surgery before John has cancelled so John is first in line in the morning. Can you imagine being second in line??? Not me! I want that surgeon fresh and rested and not tired of doing any part of his job. He told us today that sometimes, he can get this operation done in 2 hours, if there are no complications and if the pancreas is cooperative. My reaction was "Just take your time ok!" Just do it right the first time and hopefully we can get on with the healing, pronto. More likely the surgery will take something like 6 hours. That's better than 10. These guys have got it down to a fine science.

There are some dishes to do, but I wanted to get one more post out to everyone before we head off to bed. I'm going to have a lap top tomorrow and it will do me good, and hopefully you too, to try and find a hot spot and fill you in on the admitting and pre-op and to let you all know that we are holding it together. There are people coming by to keep me company. All are welcome. It's going to be a long day. If you don't have my cell phone number, hopefully you know someone who does. If you want to come by the Walnut Creek Kaiser, it would probably be good to call before you come, just so I can tell you where we are. You will find me...either journaling, blogging or knitting. I will more than likely need good coffee and I will most definitely be happy to see you. Any excuse to smile will be greeted with heartfelt enthusiasm.

Keep those good thoughts coming our way.

We love you.

Vicki, John, Taryn & Elliot

Some relief

One of the problems I know I keep mentioning is the itching that John feels all the time over every inch of his body. If it's got skin on it, it itches. This has caused quite a few sleepless nights for him and in these days before the surgery, it would have been really nice if he could have gotten some rest.

I think we found a partial solution last nite. The Dr gave him permission to take some benadryl and after doing just a cursory research on the internets, I found that colloidal oatmeal could help. I ran to the drug store at midnight last nite and found some Aveeno Bath that is 100% colloidal oatmeal for John to bathe in.

We are so happy today that this combination seems to have helped some. John stayed in bed all night, even tho he was awake for some of the night. He said it calmed the psychotic-ness of the itching and allowed him a little sleep. It was good to wake up and not find him on the couch or doing some other thing this morning.

We think maybe 2 envelopes of the oatmeal will work twice as good. It's worth a try.

Our thoughts also go out to the victims of the Virginia Tech shooting massacre today. It's hard to imagine what that horror might be like for those families and it definitely is one of those things that puts life & death into perspective. I wish them all.....

Peace, love & hope
Vicki

An unwelcome visitor

Did you ever have someone visiting your house that after a few days, it felt like they'd been there just a little too long and you couldn't wait till you could have your space back and feel the peace & quiet of getting your regular "rut" back again? It's ok. You don't have to answer out loud. I wouldn't want you to hurt anyone's feelings or anything, but the rule about fish and house guests only being good for 3 days is most of the time really true.

Not so about John's brothers being here mind you. Their presence here in our lives right now is wonderful and we could not have found any kind of serenity without them.

But it's OH SO TRUE about having cancer in one's home, life or body. This is a guest that everyone can do without and when it visits, there is a feeling of urgency to pack up it's bags and move it out as soon as humanly possible.

From the first day that John went to the Dr to find out what might be wrong with him, till the day he has surgery is exactly 1 month. For most medical things, this does seem to be a veritable whirlwind, but we all notice in these few days before the surgery date, that it just can't come soon enough for any of us who cross the Cosgroves threshold here in Castro Valley.

John might be a little more patient than those around him. Again, it's not us that has to get our entire innards rearranged. He seems calm enough, but there are any number of lifes little details that he seems to be in a hurry to try to take care of.

We are not patient tho. Elliot's first words out of his mouth when Dad told him what was going on was "Well we gotta get that stuff OUTTA there".

We are in a strange holding pattern these last few days. I suspect it will remain so in the next 2 days leading up to the surgery.

How can one ever be in a hurry to have such a majorly invasive thing happen to them? I guess only when one has been invaded by this most unwelcome visitor. I guess when something has disrupted your life so completely, can you even imagine looking forward to such extreme measures to rid yourself of the disruption.

We are quiet here. Not boistrous. We are talking to each other in ways that are different. Different in that we no longer ignore even the smallest things about what another family member might be feeling. We are hyper aware of each others feelings and we are also hyper aware of maintaining patience with each other, giving each other slack for those fleeting moments of IMpatience that might happen. We are doing all we can to just let each other "be".

I don't think my kids ever felt unloved, but now I want to shower them with love and affection every chance I get. I can't hardly stand it when they are not around. Now I have to worry that I'm not smothering them, but I'm not going to worry about that too much right now. Affection is that one thing that gives back whatever you give. Hugs are good. Touches are good. All bring healing of one kind or another. I hope.

Everyone I saw when I was out yesterday at the East Bay for Democracy event and the Debra Bowen event...I insisted on a hug. There is no question in my mind any more that we are not alone in this trial in our lives. All those reading this blog, all those that have sent love of any kind, all those that posted that love at Daily Kos and The Progressive Connection have made that abundantly clear. We are uplifted by that support and love, and it was good to feel it in tangible, touchable, human form yesterday. Thanks to all I saw yesterday for indulging me with hugs. I loved it. You should know how much you gave with that small gesture.

John is sleeping right now (5pm). Sleep doesn't come easily at night. He says it's not from worry too much, but more from itching, disrupted sleep patterns from being in the hospital...stuff like that. But sleep is fleeting for me sometimes too and as much as I don't want to admit it, it's because I'm worried. I'm scared of the operation John has to have, as much as I wish we could do it sooner, or better yet, that it was OVER and DONE. I'm scared of the possible outcomes. Elliot says the hope we have is on a big giant cord. We want it to stay that way and not have that cord shrink, even a little bit.

Whatever prayers, chants, good vibes and thoughts you send.....all good JU JU....we feel it, we need it and we ask that it continue in copious amounts over the next week and beyond. It all helps. Thank you for all you've given so far.

Peace, Love, Gratitude & Hope
Vicki

A new normal

I didn't post yesterday. It was good to be home and to enjoy a somewhat normal day, and I needed to wait till Taryn was home before I could post. Brother Pat is in town and it's so great to just spend time with him and enjoy his company. It's also nice to have that sort of relief from taking care of everything with someone else who understands what needs to be done, the sort of "protection" from everything that John and I both need.

Friday at the hospital was a little pins and needles for everything. They wanted to make sure that John could eat after making him fast for 2.5 days. It was good that there didn't seem to be any problems and everything went down smooth, without creating any more inflamation.

Before anyone arrived at the hospital, Dr Lah, the gastroenterologist who did the stent procedure, visited John to (somewhat cavalierly in my mind) let him know that the biopsy on the cells they got came back positive. I'm trying not to be pissed off at the Dr for the manner in which this was done. It seems to me that when you have news like this, it might be good to wait till the patient has some sort of support system at hand to help them deal with the news. Altho there is still alot of hope that we've caught the cancer early and that it will all come out in the Whipple surgery, it just seems like it's major enough news that you might treat it with a little more gravity than a bullet point in a list of things to know.

As with everything, you have to deal with things as they are and not how you wish they would be. There's no way to change the way Dr Lah dealt with this, so I'm doing my best to move on and not worry about it so much. There are alot bigger things that need to be dealt with right now, but when I get the chance, I will be noting to anyone that asks, that I think this was a crappy way to do this.

After I found out this news, and cried and talked and got myself a little more on balance, I once again took the long walk to CK Chang's office to find out if John was still going to be on schedule for having the Whipple. Luckily enough, he was in the clinic and I was ushered right in to his office to sit down and talk with him. I was a little surprised that he didn't know John was in the hospital and that he'd had the set back with the stent procedure. I had been assured by his office, on Wednesday, that they were going to inform him. Bureaucracy can be SUCH a bitch sometimes I guess.

Nevertheless, Chang was nice, reassuring, comforting and he answered all the questions that he could for me. He needed to see what the pancreas looked like to determine if we could still move ahead with the surgery and that made some sense to me. He promised that he would visit John when he was done with all his clinic appointments and that would before he was released from the hospital. Eventually, after seeing John, he did make the decision that the surgery would happen on schedule. We are glad for this, but this holding pattern we're in right now seems loooong.

I wanted to take a moment to say a special thank you to a few very good friends who were nice enough to come and take me away from the hospital for a little while. Martha, Penny & Joy, thank you so much for coming and changing my perspective on things for a little while. Thanks for the great dinner. It certainly beat the crap out of the cafeteria food (a whole nother story that I won't even bother with here), and more importantly, it was so nice to be surrounded with friends and love and care. Thank you for taking the time out of your lives to actually be there. Thank you for letting me cry on your shoulders and thank you for giving me the time to try to express some of the things that are going on inside. It made a world of difference to me and as long as I live, I will never forget it. Thank you also to Marie for getting in touch and doing your best to come over and help. I'm sorry I couldn't get back to you but there was alot of running around and people calling and details are not something I'm real good with at the moment. It's something I need to work on.

So Taryn is back from Mexico now. She and Elliot have been filled in on the latest and they seem to be taking it fairly well. We're a funny family. There's alot of love here, but we all seem to take our fears & tears to a private place alot of the time. Whether that is to maintain the illusion of strength or to keep a positive facade on everything, I don't know. Maybe it's just that nobody wants to lose hope and to cry or show fear might make people think that we have.

Still, I'm glad that Taryn is home. Her joyful presence in the house already makes a difference.

I'm going to try to attend a brunch today. John is not sleeping well at all. I think the itching is still getting to him and he doesn't feel like he knows how to sleep right anymore. We feel like we are just waiting waiting waiting. One great thing is that John has enjoyed a couple of beers since he's been home. They don't serve them in the hospital and the Dr gave him permission to have one a day. Beer is proof that god wants us to be happy and indeed, John is happy to be able to have one.

More catching up later.

THANK YOU for popping in and for caring about us. We love you!
Vicki

John's home

After making sure that John could take some food, he's been released from the hospital and he is now resting comfortably in his own bed. He even had a little egg drop soup when we got home.

The day started late for us that were not being held hostage. Pat arrived in the middle of the night and we all slept in a little bit, giving John a break from people that he probably really appreciated.

His blood levels were continuing to drop after the last drawing and altho I had to walk to the surgeon's office again to get him to visit, he did finally come by this evening and said the Whipple is still a go for Wednesday. So John gets a few days of rest, gets to try to put on some weight and get his strength back. His itching continues, but it's much better now and he's not nearly as flourescent as he was before.

There is more to tell, but again, it's been a long, tiring and stressful day. Now that I get to stay home, I'll have more time to impart many more details tomorrow.

Love, gratitude, peace and hope
Vicki

Today Is MUCH better

Hi everyone,

I woke up this morning, believing that today had to be better than yesterday and indeed, it was. When I first walked into John's room, I could tell right away that he was better. He's losing some of his jaundice and he itches less. The stent is doing exactly what it was meant to do and this is a wonderful thing. It wasn't supposed to go like it did, but we're happy that it's doing what it was supposed to do.

John is still not recieving food or drink. They did his blood numbers this morning and they are still alarmingly astronomical. I left them in the journal so I don't have them here, but the Dr's are pleased that they are at least coming down. To reward him for this, they allowed him to have some ice chips, but when the water goes down, it still hurts his belly, so he's not really inclined to suck on them much altho he still thinks that some marinated mozzerella, some fried chicken, a meat loaf sandwich, some beer or some martinis might be ok. =)

Dr Lah, after reading off the blood numbers, told us that the best case scenario would see John going home from the hospital tomorrow evening after seeing how he responds to a light liquid diet that they're going to try to give him. Honestly, I don't really see that happening, but I would be happy to be proven wrong. A hospital is NO PLACE for sick people. There is no sleep, there are constant assaults of every sense you can imagine and the bastards won't feed ya!!!

During the day, he seemed like he was feeling pretty good, altho weak. He got to take a shower and went out to a little porch for some sunshine. Then, later in the evening, he felt a little redundant saying he didn't feel too good. His head still aches, even tho he only had 2 mg of morphine today and his belly seemed to be bothering him quite a bit. I haven't figured out what to make of any of it, thinking back on the day. I guess we need to just continue to hope for the best.

I realized after posting Kevin's note earlier that a small family tree might be useful. John has 4 brothers. They are, in order of age, Kevin, Michael, John, Steve and Pat (or Gus). Jay is MY brother and Sarah is his wife. They run the Casa de la Knudsen Bed and Breakfast, but it's only for family, so don't try to make a reservation. I also have 2 other brothers, Ty & Tod. Yes...I'm the only girl, cept for the wives. Twas ever thus in my life. All boy cousins, all brothers. Do you think that explains anything about how I turned out? I have no idea. All the brothers that I've got now tho, AND their wifes, are great tho, and that has alot to do with who I am now.

I'm over and out. Tomorrow starts another day. I'm trying to see these days at the hospital as practice for how it will be after the Whipple surgery. I do thank you notes and I knit. John and I needed a vacation together for a while.......this wasn't exactly what we had in mind.

Peace, hope and love
Vicki

From Brother Kevin:

I've been out n about, getting Elliot to the Ortho, doing some other chores, and just popped in at home before going up to see John. Got this email from his brother Kevin, who has talked to him since I last did. Thought you'd be interested.

Brothers and Sisters,

Just hung up with John and things are going well and moving in the right direction.
Our boy is hungry which is excellent news!!!!!! He says however that they are not going to feed him until they get the results of his blood test back to confirm that his pancreatitis is improving. He's hoping that will happen in a matter of hours. That said, he sounded very strong and upbeat.

Only had a chance to speak to him for a couple of minutes but he sounded very good and mentioned that he was receiving excellent meds. He knew that Gus (John's & Kev's brother Pat) was on his way and he was hoping to get some face time with his surgeon today to catch him up on everything that John's been up to during the last 72 hours.

John also said that other that this bout with pancreases the medical staff are pleased with the way the rest of his chest and stomach appear on his x rays.

Vicki, keep up the good work and don't hesitate to let us know when you need help. Jay and Sarah, your sense of kinship and kindness is appreciated and very special to all of us.

Love,

Kev

Thanks so much for the update Kevin and I hope we get to see you sometime soon.

Things seem to be looking up today, and we are taking each day as it comes. Yesterday is behind us, thank goodness, and tomorrow can only be better.

Vicki

Long Day

I have finally almost caught up with all the email. I feel like I'm never going to get to it all right now and most of it I just have to delete. How is one supposed to keep up with Imus, Bush, DOJ and all the candidates when you can't get to a computer? Oh well, I guess I'll just have to live with the bliss of ignorance for a little while. Keeps the outrage to a dull roar rather than a massive pounding in my chest anyway, which is a good thing, since I can't do much about anything right now.

This day started at 5am. I awoke to the lights on in the house and John talking on the phone, sometimes with his voice raised higher than other times, but always with alot of tension. I tried to go back to sleep, but I could feel all that tension building in me too, and I just lay there hoping that things were going to be ok.

Alas, that was not to be, as you already know. John was doubled over in pain and he wasn't able to catch a breath so we were on our way to the ER. You pretty much know most of the rest from the previous postings.

John is now surrounded by family pictures, his book, his IPod and some lilacs for aroma therapy. He has jammie pants, his journal in case he wants to write something he doesn't wanna forget. He's also got his Leftover Salmon ball cap on. You don't see too many hospital patients with their ball caps on I don't think.

When I left him at 9PM tonite, he was tired. We're trying to figure out something we can give him that's not morphine. He says the pain has gone from a 7 to a 4 on a scale of 1-10, so maybe he can get by without anymore pain meds. He keeps an ice pack on his head for the headache, but that doesn't hardly seem like enough, but there are not many alternatives when you can't take anything orally. I think he just wanted to sleeeeeeeeep. I don't think he's slept for 3 nights running, so we're keeping our fingers crossed that he gets to do it tonite, altho I don't know how you sleep uninterrupted in a hospital.

His friend Jim Fox is scheduled to visit him in the morning while I take Elliot to the orthodontist. (it's funny how other life just keeps happening around us). When I came home tonite, my house was miraculously alot cleaner than it was when I left. (Thank you Jay and Elliot). And now I think it might be time for me to sleep too.

If anyone wants to visit John, he is at Walnut Creek Kaiser in room 617 in 3 North, B side. If you want to come when I'm there, please call me to schedule. I would love to see you, but I have a bit of running around to do tomorrow. I wouldn't wanna miss you. If you are so inspired, please pick up the little journal on his bedside table and write in it. Even if you just note something that happened while you are there, it's all important.

Be well everyone. Take good care of yourselves. If you are reading this, you are important to John and to me, and we don't have time right now for anyone else getting sick. =)

Peace, hope and love
Vicki

Resting....

....comfortably?? I don't know about that.

After many hours in the ER today and many tests and xrays, they found John's pancreas to be suffering from the procedure with the stent yesterday. Like Martha wrote earlier, it's enlarged and enflamed and he now has pancreatitis.

One wants to be pissed off that this thing was even done, but in all honesty, they had to do it to open up that bile duct that was blocked off by the "mass" that's in his pancreas. They showed us pictures of the stent when it was all done, and you could actually see the little yellow cloud flowing, finally out of the blockage.

So now, John is resting in a hospital room at Kaiser in Walnut Creek. My good friend from the campaign, Mary Reinke is sitting with him and she just sent me a text message saying that they just gave him some morphine, which doesn't take the pain away so much as make John just not care about it, which is a beautiful thing.

For the next 2-3 days (they tell us), they are shutting down his digestive system, which means that nothing can be taken orally. All nourishment, hydration and medication with be administered intravaneously. This gives the pancreas time to rest and they hope the inflammation will subside in time to keep the Whipple appointment. They even gave him glycerine swabs to keep his mouth from drying out. No water, no nuttin. It's a little discouraging to think that he is going to lose the 2 lbs he gained in the last week, but that's what has to be done.

I walked to the Whipple surgeon's (CK Cheng) department today to make sure he knew that John was in ER. I had to leave to get some things for John and to just take a little break, but I hope that CK Cheng will come by and assure John that the surgery can be performed on schedule. We are both thinking that that's the critical thing right now. We want that "mass", whatever it is, to be OUT so John can get on to the healing part.

John's itching seems to be subsiding. We don't know if it really IS subsiding or if it's just been superseded by the pain in his belly, but he's not feeling crazy with it right now. They've promised that if it continues to be a problem, they will add a medication to his drip to make him more comfortable.

Everyone's outpouring of love remains a sustaining force for both John and me. People have been so wonderful and thoughtful and generous. We understand everyone's desire to help and we are still working on how to go about just LETTING it all happen. It's a difficult thing to do for 2 people who are helpers, but we are indeed the helpees now and we greatly appreciated everthing!

I'm on my way to gather up John's book and some things to make him more comfy, then back to the hospital. I will continue to keep you updated as possible and when I can't, I'm forcing Martha to learn how to do it!! HAHA! (Thank you so much Martha, you are a wonder woman too you know)

Peace and lots and lots of love and hope
Vicki