If it isn't one thing, it's another...

Greetings once again!

Gary here again, in Potsdam; Cait's back at her Mom's in Keene after a brief return to MSK (Memorial Sloan Kettering) for the last few days. Time has become a blur after all this, so I'm not sure I can give you exact days on any of this.

We got to Keene on Saturday as noted in the last post. I drove back to Potsdam the next day -- somebody has to make some money to keep this all going... Cait seemed okay, but was having some pain. Over the next few days, the pain got worse, she got a temperature, the pain got real bad, AND she got a temperature, they took her to the Keene ER and called MSK for guidance. Let's get her back down here, they said. So to her dismay, Cait got another ride in an ambulance -- not as fast and wild as the last time, no snowstorm, a lot longer, and almost as uncomfortable.

IV antibiotics, a drain installed to get some fluid out, pain killers IV. Finally they recognize that her intestinal system wasn't working, she was all blocked up, and that was probably the source of the pain (Nothing like feedback loops, eh? Pain causes pain-killer drug taking which causes more pain, around and around.) So after quite a bit of unpleasantness that doesn't need to be repeated here, she's off the heavy narcotics and on some things to make her intestines work properly. And hopefully, it's more steadily uphill from here.

Lesson illustrated: this was a major surgery. The way forward will not be easy or straight. She's now missing quite a few anatomical parts and what's left doesn't work quite the way it worked before. And she's having to get used to the new body operation.

She would be writing this herself, but she's still got quite a bit of pain, more fatigue than she wants to have, and the general unpleasantness of healing after major surgery. And she did want to keep everybody posted.

She wants to thank all of you for your kind thoughts and prayers, and she asks for your patience while she gets herself back to normal at whatever pace it takes.

Regards to all!

Update

Greetings once again! (This will be our last post from NYC. Yayyy!!!!)

Whew! What a whirlwind! Sorry for the time in between posts: all of this is quite tiring and distracting...

Short summary: Cait is recovering well, with some bumps along the way. To be expected, I expect... The pathology report came back clean of any cancer, either in the margins or in the lymph nodes. So at least for the present she is cancer free. She'll be doing chemo starting in a month or so to make sure she stays that way.

This is Saturday AM. We're packing up to drive to Keene, NH, where Cait will be resting up for a week or two at her Mom's.

Wednesday, we sprang her from Sloan-Kettering and have been caring for her since at Miracle House. She's eating solid food, although not a lot. Now that the nurses aren't poking her every few hours for blood (do they really keep vampires in the cellar? or does it just seem that way?...?), now that the IV beepers have stopped beeping, now that her roommate's visitors aren't talking loudly on their cellphones -- the ones with the loud obnoxious ringtones, etc, etc, now that she has a quiet room and a comfortable bed, she's getting a more or less full night's sleep. (Can you tell from this description that Cait does not enjoy life in the hospital?)

She had her staples taken out yesterday (fascinating technology -- both the staples and the staple remover). The incision is well healed and healthy.

She's been feeling "like crap" (in her own words). We've been doing our best to keep her comfortable. And she's doing better and better. She's walked several city blocks (north to south, the short ones...) and is sleeping better and better.

In short, a successful operation (not to in any way suggest that this is fun or pleasant....) and the beginning of a successful recovery.

Thank you all for your kind comments, thoughts, prayers, etc.

We'll keep you posted.

Gary for Cait

/The News from Memorial Sloan-Kettering

Greetings from the Big Apple (is it still called that? Am I dating myself here? Again, this is Gary, Cait's husband, filling in for her during her indisposition.)

The operation was successful!! (sounds of cheering in the background) We are all relieved -- she came through it with flying colors. The tumor was very small and showed no indication of having spread to lymph nodes (final news on that in a week when the pathology report comes back). It all seemed almost boring, just business as usual to the surgeon, nothing new -- AND THIS IS WHY WE CAME HERE -- these guys do the Whipple about once a day!!! (Another note for anyone contemplating or being compelled into very complex and serious surgical procedures: the research is unequivocal -- find a hospital where they have A TEAM that does THAT PROCEDURE more than most or even anybody and you'll get the best results. You want your procedure to be boring to the surgical team; you want them to be skilled and practiced AS A TEAM; you DO NOT want them to be having to be checking a procedure manual to make sure they're following the steps in the right order.)

Thank you to everyone who offered kind thoughts, prayers, or whatever mental or spiritual practice you follow. We gladly accept help from any quarter and we truly appreciate the help and kind words and thoughts that people have extended our way.

Another note: for anyone considering getting treatment for any serious disease in NYC -- check out Miracle House. (www.miraclehouse.org). You get to stay in a real NY apartment house on 43rd and 11th Ave, just around the block from the 42nd St bus stop; at a rent of $50/night for a room in an apartment. Wonderful people! Breakfast at a local diner is included. Also dinner 3 nights per week. And when the gym and pool aren't being renovated (like now...) an olympic pool and workout gym!! Other than this, you get to surf Craig's list to find rooms to rent in Brooklyn or wherever...

More later as Cait recovers.

Gary

News from Fletcher-Allen in Burlington, VT

Greetings! (This is from Gary, Cait's husband)



Cait is feeling some better.



She was moved over here to Fletcher-Allen yesterday (Friday, 1 Jan 2010 -- what a great way to start a new year...???) by ambulance (note to those who might have to be subjected to this in the future: be forewarned: she reports this is a nauseating way to travel, not the least bit enjoyable). I drove over separately at 45 mph through the light, slippery snowstorm - also not enjoyable.



We both got here about 9-10 last night. I got to sleep on the floor in her room on a rollaway mattress; marvelous accommodations at the price and comforting to Cait to have me right there.



Her numbers are improving; elevated liver and pancreas enzymes. She had a very painful pancreatitis attack at home and we took her to the ER in Potsdam; they admitted her and gave her dilaudet (sp? one notch up from morphine) which stopped the pain but gave her nausea and a headache. When she got a fever ( 101-102), the Potsdam doctor decided to ship her over here to review the stent they put into her bile duct over here. As I said above, she's been getting better without another procedure, and they're now thinking she may be better enough to release to my care tomorrow (Sunday) so we can get her down to NYC on Monday for her pre-op tests at Sloan-Kettering on Tuesday AM. Let's all keep our fingers crossed.



The final decision for the schedule will be Sloan-Kettering's - do the Whipple on Wednesday? or delay?



As they say in church: ora pro nobis.



More later...

Family Time

Noah and Alex putting on the lights for me!!!

We have to have the stocking picture!

And an embarrased Santa kitty!

Christmas morning!!!

We had such a lovely Christmas with two of my three sons!! We also had Christmas dinner with nearby friends and made music, sang, drummed, fiddled and danced! Noah and another guest, both violinists, played a waltz duet by Jay Unger which Gary and I danced to at our wedding 21 years ago and we danced to it again that night! It was a wonderful time! We have been enjoying our week of reprieve here while I am recovered from the liver problems and feeling so much better and before my surgery.

I hope everyone has a healthy and happy New Year filled with joy and laughter!!!

xo

Update

Hi All! First of all I want to wish everyone a Merry Christmas and a wonderful New Year!!! I have throughly enjoyed meeting and interacting with the people who read and respond to my blog! This was a new venture for me and while I thought it was going to be about weaving, it has turned out to be so much more. I have gained a lot of support from all of you and I just want you to know how much you matter to me!!!!!!!

I am traveling to Sloan Kettering in NYC on January 4 and spending the 5th (my Noah's 19th birthday) enduring tests at the hospital. On the 6th I will have the Whipple procedure and we hope to stop this cancer from spreading. Right now the cancer is confined to the pancreas and has not affected any lymph nodes or invaded any other organ as far as they can tell. So I'm hopeful and determined. Hopefully we can afford to take my sons down for the time I will be in the hospital and they will get to see some of the city with all the Christmas decorations and window shop and visit with me as I get stronger. I will be in the hospital they say for at least 7 days and then we are travelling to Keene, NH to drop me at my Mom's. I have sisters nearby who will help and I will probably stay there a week or so just resting.

I hope to use my sister Meg's laptop to keep my blog updated for any who are interested!! And I will be closing my Etsy store for the duration.

Thank you all for your caring comments and all that healthy energy and healing coming my way! It means the world to me!!
xo

More Surgery

Hi All! And many thanks for all your wonderful and warm comments. We had one successful surgery to fix the valve on my liver to my pancreas and the itching has improved a lot and I'm eating a little more and sleeping a lot better. The bad news is the reason the valve collapsed is a cancerous tumor on my pancreas. Right now they have staged it at a 1 with no other involvement though they warn us that they can't know until they are really in there--not just with a scope. So we are looking into Sloan Kettering in NYC for what is called the Whipple procedure but nothing has been scheduled yet. My Adam is looking into flights from Hawaii but we do not have a date yet. I'm taking my boys with me to the city when we go and I think there is a network of people in Manhattan who put people up connected with the Cancer Society. So on to the next adventure of life here in the North Country!!

xo