Home Again...............another try

Sooooooo........I have managed to get discharged again yesterday afternoon from St. Vincents - things are not all they should be but we are headed in the right direction.....will start to work in solids gradually as we see more improvement on my ability to handle the liquid diet.  Have managed to get off of the pain and nausea medicine so i'm feeling somewhat comfortable that we are headed in the right direction - at this rate it is something i can manage at home instead of at the hospital which is a nice change. 

The tests showed there wasn't a blockage in the system - there was a lot of distention in the small intestine with a fair amount of adhesion's which is typical after surgery I am told - if you like the 9-month pregnant look this may be an option for you.

I think the trauma of what my body has been through in the last week has finally caught up with me and all the emotion baggage that goes with it.....i feel much better from a gastro perspective but i feel like i have been run over a few times by that train that hit me last August.  So hopefully this is now truly the road to recovery - i would very much like to try a little painless living for a while.  It reminds me of a song from my youth which captures my typical days this past while:

25 years and my life is still
trying to get up that great big hill of hope
For a destination
I realized quickly when I knew I should
That the world was made up of this
Brotherhood of man
For whatever that means
And so I cry somethimes when I'm lying in bed
Just to get it all out what's in my head
And I'm, I am feeling a little peculiar
So I wake in the morning and I step outside
And I take deep breath and I get real high
And I scream from the top of my lungs
What's goin' on
And I say hey....
And I say hey what's goin' on
And I say hey....
I said hey what's goin' on

Stay Healthy
Best
C-

ALF's Revenge

Good news - finally got the NG tube removed last night and was treated to a cranberry juice dinner.  Have been upgraded to a clear liquid diet for the today - so lots of gelatin, juice, sorbet and broth - usually i would be anxious to get this moved up to a full liquid diet but after last weekend i am more than ok with moving along slowly................

Feels like the colon is starting to try and wake up so that is a good sign - now that things are starting to move along Alf is fighting back from the inside now.  Quite painful when anything passes the surgery site where the intestine was sewn back together - but if it wasn't painful it wouldn't be my problem right?

Maybe solids tomorrow - at least the bruins are winning - something to look forward to.  Who knows whats going on with the Sox - do you think Valentine is regretting his decision yet?

Stay Healthy
Best
C-

Back to Club Med - Life after ALF!!!

Well - be careful what you ask for - while i was looking forward to actually being able to finally sleep through the night for the first time since August 17, 2011 - that hasn't quite become a reality yet for me.  I was discharged Saturday morning in time to take in Sebby's lacrosse game at noon and Aidan's grudge match saturday evening - amy and i had a nice time and got in a mile walk before the game and than it all went down hill (to hell.....)  Spent the night throwing up and in incredible abdominal pain - couldn't keep anything down so i could not take an pain or nausea pills which only added to the drama.  Was re-admitted yesterday courtesy of Mr. Sebastian who had the honor (or horror) of having to drive me to the hospital - brought back all sorts of painful memories from this summer.  Turns out they released me a little to early and the colon hasn't woken up yet so everything was just backing up - i was so distended i looked 9 months pregnant - the medical staff was shocked - so i am happy to report that i didn't blow up because that for sure seemed like a real option - and a desirable one at that if it would have relieved the pain.  So i am back at Club Med - got an NG tube last night - and you know how much i like those - i am hoping to get some activity down below and have it removed today - makes for a very difficult night of sleeping, or trying to, not to mention a sore throat from hell. 

 I think Amy is ready to pull up a bed next to me so she can finally get some rest - it is definitely easier to be the sick one - i don't think the spouses get enough credit - it's about 10 times the work for them - or course she wants to do more than any one will allow - which pisses her off.

Looks like there has been a sighting of Jerry and the East Coast White's relaxing at White's Landing - good to see - how i miss those Patriot's Day's.

Stay Healthy

Best

C-

A Lovely View

Hello Everyone,
Amy here, posting from Room 826 at St. Vincent's Hospital in sunny, springy Portland.  We are enjoying the sweeping views of the West Hills, but would rather be looking out at Lesser Park from 5740 SW Haines Street, however, that will have to wait until tomorrow.  Chris is still awaiting the reboot of his digestive system, which the doc had said could take 4-5 days.  The resident approved for him to move to scrambled eggs last night for dinner to complement his liquid diet and Chris got overzealous and after 8 eggs consumed between 6:00pm and 8:00pm his system fought back with nausea, pain and bloating that paid him back all night long!  Of course, I think it may have also had something to do with the Bruins lack luster start to the post season squeaking out an overtime win to a 7-seed team.  I am sure he is not the only B's fan who went to bed with indigestion last night!

The doctor came today and encouraged him to go slower and smaller (now they tell us!), and they will keep him one more night and introduce just a bit of solids with dinner today.  Eggs, in any form, are not likely to be on Chris' menu for a long time after this experience; quite unfortunate as he had previously been looking forward to more of my mom's deviled eggs which he discovered last summer!

I am bringing the boys after school today so they can visit.  The key is for Chris to be out by tomorrow evening when Aidan's lacrosse team, the Riptide, have their season opener against arch-rivals the "Lincoln Select" for bragging rights as the top club team in the Portland metro.  Luckily, the forecast is for a sunny, warm weekend, so it will be plenty of fresh air ahead to aid in recovery and keep up his walking.  We are gathering fans on the 8th floor for our epic walks lapping the ward, gaining kuddos for our pace and distance!  Anything to help his digestion and divert boredom during this latest stint at Club Med...

Thanks very much for all the notes, prayers and well wishes, it really makes us feel so loved and supported.   Take care, Amy

ALF - Outside-In

Well i am happy to report that the surgery appears to be a success - Alf has been successfully relocated back inside the abdominal cavity to his rightful place.  Currently we are now in a holding mode waiting for the colon and large intestine to "wake up" after a (9) month vacation.  I was on a clear fluid diet yesterday and have been upgraded this morning to a full fluid diet today so i am hoping to move up to some solid foods by this evening which would allow me to be discharged tomorrow.  A nice hamburger would be a nice addition to watching the Bruins kick off the Cup race tonight.  I can now eat without getting super nauseous so i am optimistic we are close to a solid diet.

I haven't actually witnessed the wound site yet but that will happen later this afternoon when we have a scheduled dressing change.  The site is apparently much like the wound from the resection surgery in that they do not close it - it heals on it's own.  I'm told that it is not as deep as the mother of all wounds so it should close much quicker - we still haven't received the care instructions for when i go home but we are hoping we don't have to bring Nurse Amy out of retirement.

Other than that the PowerPort (cath) site has been quite cooperative - they went in through the original scar left from when it was inserted back in October and the pain has been pretty manageable - probably from me being more concentrated on the Alf site.

Thanks to everyone for their prayers and emails - there were lots of deja vu moments yesterday morning when we checked in - we can't wait to see you all in August to thank you and enjoy a more conventional vacation - this time i will actually be able to eat with you all - how nice it will be.

Go Bruins!!!
Go Celts
Someone please help the Sox.
Congrats to all you BC Eagles - another national hockey championship!!!!!!!!!

Stay healthy -
Best
C-

ALF - Only 4 Days Remaining

I met with the surgeon Thursday - there were no strictures or lesions in the colon so he has given the "go" for the scheduled reversal next Wednesday.  That means Wednesday morning between 9 - 11:00 a.m. we will finally bid farewell to our beloved Alf.  It been (9) months of a one sided relationship and i will be glad to see him go.  Although ALF has provided quite a few memories over the last 3/4 of a year - unfortunately they are not worth remembering or repeating - so c'est la vie.

The surgeon will not repair the hernia's - there is too much risk involved to do both the ileostomy and the hernia's at the same time so instead the plan is to reverse the ileostomy and remove the power port from my chest - so the good news is there will be only (2) surgery sites instead of (4)- i still would prefer to just be knocked out and have them go for everything.

Kidney stone - plan is to ride it out and hope it passes by itself with minimal discomfort - so i'm sure that won't happen.  There is a back up plan involving a urologist but hopefully we won't need to go there.

Next steps

Looks like i should be in the hospital for 2 - 3 days after the surgery - they treat it much like a crohn's flare up - a day of NPO and than work your way toward solid foods - bottom line is you don't leave until you prove you can handle solid foods.  Unless there is a complication they will not need to go back through the wound - bonus for me - needless to say i am hoping for no complications.  Sounds like the chances are pretty low they would need to open up the wound.

Lots of monitoring from the Oncologist - especially the nodes that were identified in the left lung and liver so that will be ongoing for the next (3) years at least. Apparently the cancer if it does return typically never returns to the same site - it usually will show up in the lungs or liver hence the monitoring - if it does best to catch it early.

Other than that it is back to making friends with my Gastrointerologist - hopefully i can disprove his theory that the Crohn's will return within a week of the ileostomy reversal.  Need to go through some testing with him as well to monitor the Crohn's so that will be a future update.

Looking forward to getting back to work rejoining that thing called LIFE!!

Stay Healthy

Best

C-

1,2,3 look at me - finally I'm Cancer Free!!!!!!!!!!!!

 After a record rain fall the last week or so today finally decided to yield an incredibly beautiful sunny day so you know there must have been good news on the horizon for someone - and alas, today it was finally my lucky day, finally (did i already say that) yeah finally.

Although the day started with a wonderful barium enema - (if you've never had one you are in luck- i definitely prefer the oral - at least you can order it flavored with 0.0001% strawberry) to make sure the large intestine/colon/surgery site are connected and ready to begin working as we start the count down to the Alf reversal (4/11/12) - i was treated to call from my oncologist who didn't want to wait until Wednesday to give me the news!

The CT scan i took last friday came back clean - i.e. Cancer Free!!!

Keep in mind it is me so you should know by now that nothing comes that easy for me .....they did find 2 nodules in the kidney but they were present in the baseline CT scan we took before Chemo (carcinoma in place) and another nodule in the liver which they believe just did not show in the baseline CT - the belief is they are all benign and we will be tracking them every 3/6/12 months to confirm the theory.

Other exciting finds - apparently i picked up another hernia - i know i had one courtesy of the Sunriver kitchen demolition that i have been putting off for about 8 years and apparently I picked up a companion one somewhere - i will discuss with the surgeon on Thursday - hopefully he can fix them when he reverses Alf. 

And lastly, after 3 kidney stones the last few weeks there appears to be one more in there - i am going to ask on Wednesday if they can explode it instead of waiting for it to release it's hell.  For all those that have had them and say it's the worst pain you've ever felt - consider yourself lucky you don't have Chron's - we call them warm ups.

So, hopefully i will have more positive news Thursday after meeting with the surgeon.  I am also meeting with the Oncologist on Wednesday to go over calenders and schedule all the various follow-up testing - for all the family medical personnel - if there is something i should be asking other than the obvious please let me know.

ALF COUNTDOWN:  10 DAYS

Stay Healthy -
Best
C-

Good luck Sandy - it will be a distant memory before you know it - stay strong and positive.