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
Sunday, April 29, 2007
Friday, April 27, 2007
From Vicki - HE IS SPRUNG!
From Brother Steve:
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
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
Thursday, April 26, 2007
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.
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.
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.
Wednesday, April 25, 2007
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
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
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
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
Monday, April 23, 2007
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.
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.
Sunday, April 22, 2007
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.
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.
Saturday, April 21, 2007
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
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
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
Friday, April 20, 2007
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.
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
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
Wednesday, April 18, 2007
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
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
Tuesday, April 17, 2007
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
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
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
Monday, April 16, 2007
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
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
Sunday, April 15, 2007
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
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
Friday, April 13, 2007
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
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
Thursday, April 12, 2007
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
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.
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
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
Wednesday, April 11, 2007
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
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
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
John's been hospitalized .....
Dear Friends of John and Vicki:
Martha here. Vicki asked me to give everyone a brief update on John’s situation. The stent was inserted yesterday – during a half-day outpatient procedure. Unfortunately, one of the possible side effects of the placement of the stent has occurred – and John has developed pancreatitis.
He had a very difficult night -- with a great deal of pain. He was taken to the emergency room early this morning. He has been given morphine – so his pain has been brought under some level of control. He is being admitted into the hospital soon – (the orders have been written) – as they need to keep him hydrated and nourished – and his pain and bowels controlled.
We don’t know much. His surgeon has been notified – but is currently in surgery himself. We don’t know what this means relative to the planned Whipple procedure or how long John will be in the hospital because of this latest set-back. We really won’t know much until later on today.
As soon as she can, Vicki will be posting an update here – to let all of you know John’s current status. Your love and support has been a great comfort to the entire family during this difficult time. Please keep them in your thoughts.
Martha here. Vicki asked me to give everyone a brief update on John’s situation. The stent was inserted yesterday – during a half-day outpatient procedure. Unfortunately, one of the possible side effects of the placement of the stent has occurred – and John has developed pancreatitis.
He had a very difficult night -- with a great deal of pain. He was taken to the emergency room early this morning. He has been given morphine – so his pain has been brought under some level of control. He is being admitted into the hospital soon – (the orders have been written) – as they need to keep him hydrated and nourished – and his pain and bowels controlled.
We don’t know much. His surgeon has been notified – but is currently in surgery himself. We don’t know what this means relative to the planned Whipple procedure or how long John will be in the hospital because of this latest set-back. We really won’t know much until later on today.
As soon as she can, Vicki will be posting an update here – to let all of you know John’s current status. Your love and support has been a great comfort to the entire family during this difficult time. Please keep them in your thoughts.
Tuesday, April 10, 2007
The Stent is In
We got a call yesterday that told John that he would be first in the procedure room rather than second, so today we had to be there at 11:30. Check in was normal. It was the first time we'd been charged anything for a co-pay at Kaiser, so going forward, we are going to be very very thankful for all those that have decide to help. I can't even imagine what it's going to be like for a 14 day in patient stay. Yikes! But THANK YOU!!!! We are feeling alot more like we are going to keep our house these days. YAY!
We were in the hospital today from 11:30 till 5PM. There is check in, then a waiting room, then pre-op, then waiting there, then to the procedure, then waiting there, then recovery, then waiting there. Waiting waiting waiting. I got an incredible amount of knitting done. Knitting is good. It keeps my mind off of unpleasant things and it's a little like meditation for me. I'm knitting peace signs at the moment (and probably will till the troops are brought home...kind of my prayer for peace you might say).
John is doing ok. We saw the picture of the stent and you could see a little of the yellowness escaping from its prison which is a good thing. The Dr said it went better than he thought it would, altho I'm not sure John understands what that means at the moment. His belly hurts. He can tell they were in there and doing something. The good thing is, he's been sleeping since he got home. He's also eaten some wonderful chicken soup, made by James the cook at the Creamery. That made him feel much better.
The itching is not going to be over immediately. It will subside a little bit each day, but it can't happen fast enough for John. Understandably, he's feeling a little cranky and not much up for talking to anyone (me included I think). I hope he feels better tomorrow.
Neither one of us are much for being fussed over when we're not feeling well. You'd think I could understand that and just leave him alone, but it's difficult to do when all you want is to make everything feel better. It's only the beginning of finding the patience to get thru all this, for both John and me. But one step in alleviating the awful symtoms is done. Keep your fingers crossed that it helps...and fast.
Over n out
Vicki
We were in the hospital today from 11:30 till 5PM. There is check in, then a waiting room, then pre-op, then waiting there, then to the procedure, then waiting there, then recovery, then waiting there. Waiting waiting waiting. I got an incredible amount of knitting done. Knitting is good. It keeps my mind off of unpleasant things and it's a little like meditation for me. I'm knitting peace signs at the moment (and probably will till the troops are brought home...kind of my prayer for peace you might say).
John is doing ok. We saw the picture of the stent and you could see a little of the yellowness escaping from its prison which is a good thing. The Dr said it went better than he thought it would, altho I'm not sure John understands what that means at the moment. His belly hurts. He can tell they were in there and doing something. The good thing is, he's been sleeping since he got home. He's also eaten some wonderful chicken soup, made by James the cook at the Creamery. That made him feel much better.
The itching is not going to be over immediately. It will subside a little bit each day, but it can't happen fast enough for John. Understandably, he's feeling a little cranky and not much up for talking to anyone (me included I think). I hope he feels better tomorrow.
Neither one of us are much for being fussed over when we're not feeling well. You'd think I could understand that and just leave him alone, but it's difficult to do when all you want is to make everything feel better. It's only the beginning of finding the patience to get thru all this, for both John and me. But one step in alleviating the awful symtoms is done. Keep your fingers crossed that it helps...and fast.
Over n out
Vicki
More on today's procedure
Today's Endoscopic Retrograde Cholangiopancreatography or ERCP is explained pretty well here.
The Dr says that they will try to get some cells when he's in there, but this biopsy will likely be inconclusive. If the biopsy is positive, then it's a true positive, but if it's negative, then we still don't know for sure about the presence of cancerous cells until the mass in the pancreas gets a biopsy.
We are just hoping that the procedure relieves the build up of biliruben immediately. John is not sleeping because he itches from the top of his head to the tip of his toes every minute of the day and night. There is no relief from the build up of digestive fluids and salt that are trying to get out thru his skin. I'm trying to find a good resource on biliruben, but time is running short and we have to get going. Once we drop John at admitting and make sure he's all good to go, Elliot and I are probably going to go scope out a movie or something.
All love and good energy sent in this direction is great. We are feelin it and soaking it up and honestly, I think it helps.
Peace & hope
Vicki
The Dr says that they will try to get some cells when he's in there, but this biopsy will likely be inconclusive. If the biopsy is positive, then it's a true positive, but if it's negative, then we still don't know for sure about the presence of cancerous cells until the mass in the pancreas gets a biopsy.
We are just hoping that the procedure relieves the build up of biliruben immediately. John is not sleeping because he itches from the top of his head to the tip of his toes every minute of the day and night. There is no relief from the build up of digestive fluids and salt that are trying to get out thru his skin. I'm trying to find a good resource on biliruben, but time is running short and we have to get going. Once we drop John at admitting and make sure he's all good to go, Elliot and I are probably going to go scope out a movie or something.
All love and good energy sent in this direction is great. We are feelin it and soaking it up and honestly, I think it helps.
Peace & hope
Vicki
Monday, April 09, 2007
The Stent and the Itching
We went to see the gastroenterologist today. Even tho the surgery is only 8 days away, they want to do this procedure that inserts a stent into the bile duct so that all those juices are not getting all backed up into John's liver. I don't remember the name of the procedure now, but it's a long name and the Dr said he was putting a 7 centimeter straw in there. John thinks he's going to pick it up from the cafeteria on his way to the OR.
We are going to be at Walnut Creek Kaiser at 11:30 am and they expect him to be there for 4-6 hours. He'll be off work for the rest of the day, but he expects to be back at work on Wednesday. Don't try to stop him either, cuz he'll go if he wants to, no matter what anyone says about it.
One of the things causing anxiety in John is that he's never had any kind of surgery before and I think the anesthesia kind of freaks him out a little. He gets a little preview of that tomorrow, so maybe that's one thing that he won't worry about so much for the following 7 days.
The Dr says that the itching he feels and that keeps him awake at nite now, will start to subside a little bit each day. Hopefully, he'll get more comfortable with food and maybe even he can gain a couple of pounds before the surgery. The man has no ass whatsoever at the moment and he needs one.
I'll write more about all of that stuff when we get home tomorrow, but I wanted to first say how thankful we are for the grassroots community who have stepped forward so generously to help us thru this scary time. We feel so much love from everyone and the Daily Kos post that Babaloo put up today was a little like This Is Your Life for me. So many good friends and so many friends that I haven't even met yet. There is nothing like the living proof that progressives really put their love and money where there philosophies are. We really ARE all in this together and it's so great to feel that connectedness with the world and the people in it. This day has restored some of my lost faith in humanity in a BIG WAY.
Thank you all for being there for me and for John. I know he has some stuff he wants to say too, so I won't steal all of his thunder, but THANK YOU!
We are going to be at Walnut Creek Kaiser at 11:30 am and they expect him to be there for 4-6 hours. He'll be off work for the rest of the day, but he expects to be back at work on Wednesday. Don't try to stop him either, cuz he'll go if he wants to, no matter what anyone says about it.
One of the things causing anxiety in John is that he's never had any kind of surgery before and I think the anesthesia kind of freaks him out a little. He gets a little preview of that tomorrow, so maybe that's one thing that he won't worry about so much for the following 7 days.
The Dr says that the itching he feels and that keeps him awake at nite now, will start to subside a little bit each day. Hopefully, he'll get more comfortable with food and maybe even he can gain a couple of pounds before the surgery. The man has no ass whatsoever at the moment and he needs one.
I'll write more about all of that stuff when we get home tomorrow, but I wanted to first say how thankful we are for the grassroots community who have stepped forward so generously to help us thru this scary time. We feel so much love from everyone and the Daily Kos post that Babaloo put up today was a little like This Is Your Life for me. So many good friends and so many friends that I haven't even met yet. There is nothing like the living proof that progressives really put their love and money where there philosophies are. We really ARE all in this together and it's so great to feel that connectedness with the world and the people in it. This day has restored some of my lost faith in humanity in a BIG WAY.
Thank you all for being there for me and for John. I know he has some stuff he wants to say too, so I won't steal all of his thunder, but THANK YOU!
High Anxiety and all manner of help
Today's post seems about nothing and about everything all at once. There are so many things that we (and I'm sure others in similar circumstances) go thru in getting thru the days till surgery. There are things that need to get done (house cleaning, banking, bill paying, making sure there is enough ice cream made, getting the old car donated, refinancing the house...yada yada yada) and there are questions that need to get answered (how long will it take to recover after getting out of the hospital, is there a power of health care decision form to fill out, how do I take care of Elliot and make sure that John always has company in the hospital, just a few among them).
I thought about making a hospital schedule for John. I want to make sure there is always someone there with him that can keep him company AND be witness to anything that's going on in the hospital. I'd like someone else to always hear what any Dr or nurse has to say, write it in a journal so we don't forget (Thank you Mary R for the great suggestion) and so we don't miss anything. At this point tho, we don't know if John will be in Intensive Care, but we suspect that he will be for at least a day or two, so that means I'm the only one that can be there.
My friends in the grassroots community have been amazing in their desire to help. Babaloo, from Say No To Pombo has started a new blog called Progressive Connection and they are reaching out to let people know there is trouble in my little corner of the world. John & I are completely overwhelmed by the outpouring of love and willingness to help.
John and I are on our way in a few minutes to consult with the gastroenterologist about getting the stint put in his bile duct to stop whatever is blocked up inside him. The itching, caused by the biliruben and jaundice is getting so out of control that John is having trouble sleeping, which adds to his already low energy levels. We are very hopeful that they do this thing right away and that it helps right away. Altho John has gained a couple of pounds back, now that we are more concientious about his eating, he needs to get his energy back up. It's weird to have him not doing something all the time.
I will report more when we find out what's going to happen with the stint.
Peace & love to all
Vicki
I thought about making a hospital schedule for John. I want to make sure there is always someone there with him that can keep him company AND be witness to anything that's going on in the hospital. I'd like someone else to always hear what any Dr or nurse has to say, write it in a journal so we don't forget (Thank you Mary R for the great suggestion) and so we don't miss anything. At this point tho, we don't know if John will be in Intensive Care, but we suspect that he will be for at least a day or two, so that means I'm the only one that can be there.
My friends in the grassroots community have been amazing in their desire to help. Babaloo, from Say No To Pombo has started a new blog called Progressive Connection and they are reaching out to let people know there is trouble in my little corner of the world. John & I are completely overwhelmed by the outpouring of love and willingness to help.
John and I are on our way in a few minutes to consult with the gastroenterologist about getting the stint put in his bile duct to stop whatever is blocked up inside him. The itching, caused by the biliruben and jaundice is getting so out of control that John is having trouble sleeping, which adds to his already low energy levels. We are very hopeful that they do this thing right away and that it helps right away. Altho John has gained a couple of pounds back, now that we are more concientious about his eating, he needs to get his energy back up. It's weird to have him not doing something all the time.
I will report more when we find out what's going to happen with the stint.
Peace & love to all
Vicki
Saturday, April 07, 2007
Managing Expectations
I've been thinking alot lately about this subject and also about the subject of capacity. They seem to pop up in all aspects of my life, whether it's in the political world, my home life, work and they also seem to have so many layers.
One cannot think about managing expectations without delving pretty deeply into the person you are and how you approach all aspects of life. It seems that no matter how "zen" you are, you always have some type of expectations about people, situations and even yourself...every minute of every day.
In our talk with Elliot to tell him about his Dad's medical issues, I asked him to try to manage his expectations about what Dad might be able to do, or not do, during his recovery. I wanted him to understand that Dad was going to be down for quite a while and that he wasn't going to want to go to the driving range for a long time. (I could take him, but I suck at hitting a golf ball and it only serves to frustrate me to try most of the time). I think Elliot got it, but I realized that very evening, that I didn't!
When John came home from work that nite, the very night of our consultation with the surgeon, he was troubled and seemed to be second guessing the plan that we were so positive about just hours before. I felt unable to talk him out of feeling unsure about what was going to happen and it was a little frustrating to me that we couldn't just move forward with a positive feeling for what was about to happen. After the 2 weeks prior, of being so scared and not knowing what was going to happen and what the outcome might be, I needed a moment of relief from that and I was so happy that we could expect John to recover fully and live a long life once he was done recuperating.
The following morning, as John and I talked thru it more, I realized that I was not managing my own expectations of how I wanted John to feel and it was like a hit in the gut to me. Who the hell am I to expect John to feel like I feel?? I'm not the one that has to get opened up from stem to stern! I'm not the one that's going to be held hostage in a hospital for days on end! I'm not the one that faces even remote possibilities that I might not see my 50th birthday. (Since I've already passed that) I really have no right to expect John to feel anything except exactly what he's feeling and it's not a good thing for me to project those expectation on him at any time. In fact I'm pretty sure that doing so, and not getting a handle on my own expectations, is bad for John and bad for keeping communications as open as I hope (expect?) they can be as we move into the next phase of this situation.
As with every bump we come up to in this situation, there were tears and talking and realizations that as for many things in life, there is no instruction manual for going thru something like this and we are just going to have to be as open, as human and as understanding of each other as we can manage.
I'm finding, in myself, an amazing capacity for patience lately. The ability to take a deep breath, to open up my mind and my heart and try to really hear what people are trying to tell me and to really let myself and others in my family and circle of friends feel whatever it is they are feeling without judgement and without trying to direct it all. It's a good experience for me. I think it's a good experience for John, altho I won't try to speak for him. I am finding there is alot of dignity in it and those of you that know me, understand the importance of that for me.
In another post, I'm going to write about the dignity of acceptance of all the offers of help we've recieved. I think that's been something that John's had to work thru and get past.
Happy Easter everyone.
One cannot think about managing expectations without delving pretty deeply into the person you are and how you approach all aspects of life. It seems that no matter how "zen" you are, you always have some type of expectations about people, situations and even yourself...every minute of every day.
In our talk with Elliot to tell him about his Dad's medical issues, I asked him to try to manage his expectations about what Dad might be able to do, or not do, during his recovery. I wanted him to understand that Dad was going to be down for quite a while and that he wasn't going to want to go to the driving range for a long time. (I could take him, but I suck at hitting a golf ball and it only serves to frustrate me to try most of the time). I think Elliot got it, but I realized that very evening, that I didn't!
When John came home from work that nite, the very night of our consultation with the surgeon, he was troubled and seemed to be second guessing the plan that we were so positive about just hours before. I felt unable to talk him out of feeling unsure about what was going to happen and it was a little frustrating to me that we couldn't just move forward with a positive feeling for what was about to happen. After the 2 weeks prior, of being so scared and not knowing what was going to happen and what the outcome might be, I needed a moment of relief from that and I was so happy that we could expect John to recover fully and live a long life once he was done recuperating.
The following morning, as John and I talked thru it more, I realized that I was not managing my own expectations of how I wanted John to feel and it was like a hit in the gut to me. Who the hell am I to expect John to feel like I feel?? I'm not the one that has to get opened up from stem to stern! I'm not the one that's going to be held hostage in a hospital for days on end! I'm not the one that faces even remote possibilities that I might not see my 50th birthday. (Since I've already passed that) I really have no right to expect John to feel anything except exactly what he's feeling and it's not a good thing for me to project those expectation on him at any time. In fact I'm pretty sure that doing so, and not getting a handle on my own expectations, is bad for John and bad for keeping communications as open as I hope (expect?) they can be as we move into the next phase of this situation.
As with every bump we come up to in this situation, there were tears and talking and realizations that as for many things in life, there is no instruction manual for going thru something like this and we are just going to have to be as open, as human and as understanding of each other as we can manage.
I'm finding, in myself, an amazing capacity for patience lately. The ability to take a deep breath, to open up my mind and my heart and try to really hear what people are trying to tell me and to really let myself and others in my family and circle of friends feel whatever it is they are feeling without judgement and without trying to direct it all. It's a good experience for me. I think it's a good experience for John, altho I won't try to speak for him. I am finding there is alot of dignity in it and those of you that know me, understand the importance of that for me.
In another post, I'm going to write about the dignity of acceptance of all the offers of help we've recieved. I think that's been something that John's had to work thru and get past.
Happy Easter everyone.
Friday, April 06, 2007
Surgery Date is set
I will write more about this and about managing expectations tommorrow. Tonite I'm going to help write people's names on hand made chocolate easter eggs at the Ice Creamery because I'm sure business will be brisk and they'll need all the help they can get.
The surgery is set tho. John will go in for pre-op consultation on April 17th in the morning and the surgery will be on April 18th. It will be a very long day. 6-8 hours on the operating table in Walnut Creek. I will likely be there the entire day and anyone who wants to visit, take me out for coffee, hold my hand, or anything of that sort is certainly welcome to come by.
More tomorrow.
Vicki
The surgery is set tho. John will go in for pre-op consultation on April 17th in the morning and the surgery will be on April 18th. It will be a very long day. 6-8 hours on the operating table in Walnut Creek. I will likely be there the entire day and anyone who wants to visit, take me out for coffee, hold my hand, or anything of that sort is certainly welcome to come by.
More tomorrow.
Vicki
Update on John
Welcome to my first post regarding John's "ailment" and the treatments that he's getting. I sent out an email, explaining everything we found out at a consultation with a surgeon yesterday. The email explains most of John's symptoms and what we think is going to happen in the next few weeks.
Synopsis: John has "something" on his pancreas that caused him to lose an alarming amount of weight very quickly and made him jaundiced.
So this is what we know so far.
Here is an explaination of what this Whipple Surgery is all about
Since I can't figure out how to get a picture in this confounded thing, here is a pretty good visualization that shows what it all looks like and what they cut out.
Synopsis: John has "something" on his pancreas that caused him to lose an alarming amount of weight very quickly and made him jaundiced.
Hello friends,
Some of you know some of what's going on in my life recently and some don't. I want to thank you all for your personal notes of care and concern to John & me in the last few days and also let everyone else know about our situation.
Here is the update now that we got Thursday's Dr's appt out of the way. The surgeon showed us the CT scan and explained how the placement of this "thing" is making John so sick (he's lost about 40 lbs in the last month and he's bright yellow and he itches real bad, all over). The good thing about it making him sick now is that it means that we were able to know it was there AND CATCH IT EARLY!! It blocks bile ducts and stuff because it's located at the head of his pancreas. The reason most pancreatic cancer prognosis is so dire is because there is never any sign that anything is wrong.
So we have good news/bad news kind of situation. The bad news is that he more than likely does have cancer in his pancreas. They don't actually know that because they won't do a biopsy till they take the whole tumor, along with alot of other guts, out of him, but they are treating it like it IS cancer and they are going to be very agressive about it. We really liked the Dr and we believe he WILL be aggressive and not leave anything in there that could threaten John's life. From the CT scan, it doesn't look like it's gone to his liver or metastisized at this point but they will only know that for sure once they go in and see. He is also getting a sonogram today, which will give them another view of things in there.
They are going over scheduling the Dr and Operating Rooms right now and he said the surgery will be scheduled for 2-3 weeks from now. The surgery is major! He will be in the hospital for 10-14 days after and we don't know how long recovery will be when he gets home. There will be lots of tubes and bags and Borg shit that will be ugly and uncomfortable and John is not crazy about it.....but he's less crazy about the other alternative.
He's going to a gastroenterologist on Monday and there is hope that they can put a stint down there that will relieve the blockage of his bile ducts. This would be so great if they could do this so John can eat, get rid of the jaundice (that drives him crazy with the itching), put some weight on before the surgery and give him his energy back. If they try to get out of doing that tomorrow, I'm going to raise hell. (not a pretty picture as I'm sure you can imagine).
All in all, we are relieved. It's so good to be out of the dark and to know that there is a plan in place and that the chances for John living a long life to torment his kids and his wife are really good. I will be much happier now that we know something. The last 2 weeks have been scary and frustrating and so hard to watch my husband deteriorate so badly.
I'm going to postpone surgery to have my gall bladder out. I seem to be managing the attacks with my diet, but in the past, I have gone many weeks without an attack even on a high fat, campaign diet, so my preference would be to get it outta there ASAP.
So....that's all probably more than anyone wants to know about someone else's guts, but there you have everything I know about our life situation. If you have any questions, I am more than happy to answer them the best that I can.
Smile!!! It's all good news and very good chances for a great outcome. That's the best part. John is happy. Taryn is off to Mexico and Elliot will hear all about this later today. We're in pretty good shape. Once I get the house clean, life will be damn near perfect.
Peace, hope and love to you all. Thanks so much for being part of my life. I know this is not the most personal way to get this information out, but I care about you all and know you care about me, so please feel free to call if you want to ask any questions or talk about anything else.
So this is what we know so far.
Here is an explaination of what this Whipple Surgery is all about
Since I can't figure out how to get a picture in this confounded thing, here is a pretty good visualization that shows what it all looks like and what they cut out.
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