Topic: My surgery

Hi all, I wasn't even quite sure where to post this tonight but needing a place to vent and kind of let things go.  In some ways I feel bad about posting about having an upcoming surgery as that is what so many of us long for and pray to have one day.  But now that it is almost here I am scared out of my mind and not quite sure how I am going to get through the next couple of weeks.  I think it's natural for us as humans to think the worst and hope for the best.?  But I can't help but to think of everything that could possibly go wrong and think of my 2 darling children and if God forbid if anything happened during or after surgery.  So many questions going through my mind.  It was a shock to hear that I was now even a candidate.  The tumor is still quite large.  I think one of my biggest fears is that they will open me up and then find that they can't complete the surgery. Other than that I am just freaking out about complications and how I will feel and etc, etc.  I have never even broken a darn bone for heavens sake, let alone have any kind of surgery.  My pre op consult with the surgeon is on the 17th and I am hoping that after that appointment some of my anxiety will be relieved as I will have more info about the actual procedure.  But at this point I am a ball of many different emotions and as much as I feel so grateful and blessed, I am also terrified. I mean I got to celebrate my kids 7th and 9th birthdays in Dec, and my 35th is coming up in March and I hope that I will get to celebrate that as well.  Thanks all for letting me just kind of vent about this, having a rough night. hmm

Hope, love, strength...2013 and for the years to come, Porter.

Re: My surgery

Hi Porter,

I was about to turn off the computer and get ready to turn in for the evening when something made me decided to pop on here. 

You have every reason to be feeling the things you are.  Vent away.  Just know that you have a lot of people cheering for you and sending you lots of strength and support.  I'm also hoping that after the 17th some of your anxiety will be relieved.

Thinking of you and sending you positive thoughts and energy.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My surgery

Porter,

I am not a candidate for surgery and have not had any surgeries in regard to my CC so I can't help as far as to what to expect.  But I do understand your feelings and the fear of the upcoming surgery.  Even though it is something you want and it p promises better results than chemo or radiation, it's very scary to think what might happen.  It sounds like you are relatively healthy, not considering the CC, and you have youth on your side so I believe those are positives for your surgery.

I think it's normal to have anxiety before any big surgery.  I'm hoping after your meeting with the surgeon on 1/17 you'll feel better and have less anxiety.  Try to think of all the positives, like your two beautiful children and all you have to live for.  The day before the surgery try to relax yourself with some deep breathing and positive thinking.

I know you posted this but I forget...when is your surgery date?  I want to make sure I think of you that day and keep you in my prayers.

Stay strong.

Love, Peace & Hugs,
Mary

Re: My surgery

Hey thanks you guys for the support and caring kind words.  Mary, the surgery date is Jan 27th!

Hope, love, strength...2013 and for the years to come, Porter.

Re: My surgery

Porter,
Venting is natural and this is a good place to do it as so many have been through the resection and understand. You have a right to feel all those emotions. Its understandable to be nervous about a big surgery. Hopefully you can be reassured. I hope someone who has been through surgery can pipe in to reassure you. Iliana Craine is usually happy to share her experience and I think she's had two resections. Your Dr at PREOP may also help ease your jitters. Maybe even ask for anti anxiety meds if need be.  Hang in there! We are rooting for you.

Willow

Re: My surgery

Hi Willow. Thank you.  I feel blessed to have a wonderful resource right now. A woman who just had a resection last week up at the same hospital I will be having mine at.  S0 I have been in contact with that family and that has also put me out some ease.  I think everything else coming along with it all the emotions, nerves, etc...I would imagine is quite normal and just part of the process.  Tonight it just seems a little heavier than it has since I found out. hmm

Hope, love, strength...2013 and for the years to come, Porter.

Re: My surgery

Lisa Craine.. Not "ileana"! Just noticed typo

Willow

Re: My surgery

That's great that you have a local resource to gain inside knowledge from. You've gone through childbirth twice so you're probably tougher than you think smile
I admit I'm nervous tonight too for my sis as she has a scan tomorrow. Got to go to sleep...
Take care

Willow

Re: My surgery

Porter.....Just think, it would not be "normal" to not have anxiety.  And, yes all of these thoughts would go through my mind as well.  The absolute best thing to do is to talk about it just as you are doing right now. 

I have learned that one of component of anxiety  is that we lose control.  We literally turn our lives over to others i.e. in your case, the anesthesiologist and the surgeon - one puts us to sleep whereas the other cuts into our body.

On the other hand though, we give up control when we travel by plan, train, but or taxi or place our money in the banks that are run by strangers.   So, basically we give up control in so many aspects of our life, but most are in our normal experience and less intimidating.

I am glad that you are able to reach out to us and to the nice woman who had her surgery a few days ago and please know that a tidal wave of good wishes are heading your way.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My surgery

Hi Porter,

What you are feeling is so normal. Try to focus on the fact that you are so blessed and lucky to be able to have surgery. Most on this site would love to be in your shoes and I'm sure many are quite jealous. You have been given the gift of hope! Hope for getting to spend time with your children and enjoy life! I know it is easier said than done, but try and focus on the good of what this surgery can bring rather than what can go wrong. I wish you all the best and will be praying for everything to turn out fantastic! Remember, deep breaths and positive thoughts!!

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My surgery

Thanks all. Marion I totally agree . having to let go of something we have no control over! Pam I know . its hard and I almost didn't post bc I know lots of people opportunity and I dont want to come across as if I'm whining because I realize how fortunate this is. Naturally just frightened and trying to focus on the positives and a good outcome.

Hope, love, strength...2013 and for the years to come, Porter.

Re: My surgery

Porter,

Best of luck with your surgery.  Although, i didn't get it at OHSU, I did have a resection and would be happy to answer any questions you may have. It wasn't nearly as bad as I thought it would be.
And I was a nervous wreck going in for surgery.  My fears were mostly around questioning if I was doing the right thing because they didn't know my tumor was cancerous until surgery.  So, I feared I might go through a big surgery for something that wouldn't bother me in the future.  Turns out, surgery was the right decision!

Take care,

Susie

Re: My surgery

Porter -
WooHoo for surgery. That is the best anyone can ask for with this. Mark had his the 4th of June and we were in such shock that I didn't even really get nervous until the day of surgery. Part of that had to do with having a bile drain  put in before and getting sick from that. We had the same thing....they started with a laproscopic procedure first to check for any distant metastasis then go on with the surgery if none were found. They came out about 3 hours after I left pre-op to tell me they were proceeding with surgery (I found out later they proceeded because they couldn't get through previous scar tissue and I am glad I didn't know). His surgery was very long....13 almost 14 hours so I hope yours is shorter.

One thing I might suggest for you (your husband really) is about the phone and texts. I had my cell and my husband's. I felt like I spent all of my time texting people and fielding from people who wanted to know how it was going. I was very frustrated with it especially after I had told everyone that I would let them know as anything changed. I would suggest to delegate two or three people that you text/call and then do a phone tree from there. It will help limit the stress of that piece and be firm with those that feel they need to bypass the tree.

Then after surgery have your husband or someone be the "gatekeeper" for you. I told everyone no visitors for the first three days then kept it limited to family. Use the nurses if you have to have some be the "bad guy" about it. Keep it to what you feel you can do. And for at least a couple days you really won't care who's there.

Then once we got home. I did the same thing. Limited visitors. I texted everyone and said no one for the first 72 hours then they could only come if they called first and made sure it was okay. Those first few days home are crazy. Then when you feel up to it but keep it limited. I would tell people, sure come by for 15-20 minutes then politely ask them to leave.

Good luck and I am so excited for you! If i think of anything else I will let you know.
Keep us posted.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: My surgery

Hi Kris thank you for all the wonderful information.  I haven't even thought about how I was going to have someone update or stay in contact with my loved ones smile  I appreciate sharing yalls experience with me and seems pretty spot on to how I would want things done.  Is it pretty standard for them to go in laprascopic first?  Fortunately my surgeon has done 2 biopsy's on me and the most recent one in July (I forget what the procedure was called but one of the more invasive biopys) she was in there and got a good luck on what was going on then.  So i have some lessened anxiety given the fact that she kind of has an idea of what she will be dealing with.  Another question for you.  Was the surgery done up by you guys?  Ironically I was scheduled for a surgical consult up at UW on Jan 28th to see if they felt I was a candidate or not. I have questioned am I making the best choice by having it at OHSU.

Hope, love, strength...2013 and for the years to come, Porter.

Re: My surgery

Porter -
There are so many things I have swore I would and wouldn't again if we went through another surgery...I am sure I will think of more.

He had his surgery at Virginia Mason in Seattle which is really close to the University of Washington. Dr Flavio Rocha. He was awesome. Of course I was in such shock when he told us it was cc (even though I knew and had read about it before hand) that I didn't even look him up until after surgery. He trained as Memorial Sloan Kettering which we have been told is one of the top places....of course on here, I see others. He does about 6-8 surgeries for CC a year and sees about 40ish people a year that aren't resectable (his numbers and I don't know for sure how accurate). I love him and they do a tumor board there that has the surgeon, oncologist, interventional radiology, gastroenterologist and multiple other disciplines meeting. We didn't actually see them but have seen the reports and it's in line with what I have learned here.

I believe that as long as you feel comfortable with your surgeon that is half the battle.

Oh and another thing is to stock up things at home. I would make sure to get some adult puppy pads (that's what my husband calls them) but they are the flat absorbing pads they put under you at the hospital. Those are great to put under you in chairs and beds to prevent soiling if drains or wounds leak. If you come home with a drain that needs flushed ask them to give you the flushes before you leave. They are prefilled syringes with saline in them. If you have a wound that needs dressing changes, ask them to send a bunch home with you. And take all those plastic tubs and all home with. They throw it away and you paid for it. And you may find use.

If you want you are welcome to give me a call. I can answer questions now and even after surgery. 360-880-0327.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: My surgery

Hi all I had my pre op consult today.  What they will be performing is called a right trisegmentectomy?  Those that have been through surgery has it been similar to this?  I tried typing in that term in the search but nothing had popped up.  They will be attempting to remove the majority of my liver and gallbladder and lymph nodes and leave me with remaining segments 2 and 3.  The surgeon sounds very hopeful and confident, that being said won't know exactly what they are dealing with until they are in there.  I like her approach and as she put it she will be as aggressive as she can but safe.  They are going to attempt to remove everything but of course there is a chance that could not happen.  I think it definitely is worth the attempt and I figured the multidisciplinary team decided on this unanimously so it's gotta be worth the shot.  She predicts about 8 hours and 1 to 2 weeks in the hospital.  I am scheduled first thing on the morning of the 27th.  A little bump in the road however popped up today as my labs were drawn and my platelets are at the lowest they have ever been.  (My last chemo infusion was last tuesday)  I will be having another draw next Friday to see where my numbers are at and if they are still low we will be talking about the plan and options.  Thanks again for all the info and support you guys have given me and I am so blessed to have all you guys.  I feel so grateful for all of you.

Hope, love, strength...2013 and for the years to come, Porter.

Re: My surgery

Porter -

All sounds good to me. I would expect platelets to be low with chemo, hopefully they will pop up before surgery. You still have 10 days.

Mark had a Roux-en-Y procedure which is probably similar just opposite side of the liver....they took out the left lobe and the caudate lobe of the right along with the gall bladder, common bile duct and then pulled a piece of his small intestine up to make a new bile duct from the liver to the small intestine. They left him basically with 7 and 8. His was a longer surgery but that was due to adhesions and scarring from a previous surgery and he was 12 days in after the surgery but we had him in two days earlier for complications from his bile drain placement.

You have been in thoughts a lot as you get ready for this. I am so excited for you.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: My surgery

When we met with Dr. Colquhoun at Cedars Sinai for my husband, he said when my husband would have a resection, he would have a trisegmentectomy and leave segments 2 & 3 and take the gallbladder as well. Sounds like yours will be the same. Good luck. I will keep you in my thoughts.

Re: My surgery

Hi Kris they mentioned the common bile duct too and that they might have to do that as well.  With some of the technical procedural questions she said we just wont know until we are in there.  I would imagine this is common.  They are predicting the best they can with what they have to work with now. smile  Thanks Kris for the support and resources!

Hope, love, strength...2013 and for the years to come, Porter.

Re: My surgery

Porter -
Just wanted to let you know that I am thinking about you. Hope that surgery goes well on Monday and in a few days you will be able to update us on how it went. I will keep you in my thoughts and prayers on Monday.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: My surgery

Dearest Porter, I too am thinking of you and sending all the good vibes your way I can muster, besides crossing everything I own! And yes, it is very common for the Surgeon to say they will not know much until they are in there. Porter I want to remind you to ask for an epideral before surgery, it will help for the first day or 2. I am praying for God to come through the surgeons hands and looking forward to hearing good news! You go girl! There will be so many with you in spirit everyone in the surgery room may have to stand aside!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My surgery

Porter,

That goes for me, too.   My thoughts and prayers will be with you on Monday.  Look forward to your update when you are up to it.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: My surgery

Thanks all. Lainy I def will and thanks for the reminder.  I have some friends and family and house has been full the last couple of days and I drive up tomorrow to Portland to start the prep work and get prepared for Monday.  I have not been on here too much this week so sorry for not staying updated and responding to others posts.  But thanks for all the support it's been a very busy emotional week and just trying to get ready as much as we can for Monday!  There will be updates on caringbridge.org right after the surgery for follow ups until I am able to respond and be up and about on a computer smile

Hope, love, strength...2013 and for the years to come, Porter.

Re: My surgery

pfox..... Remember, you have youth on your side and tons and tons of good wishes heading your way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My surgery

Porter
Sending lots and lots of good juju for a smooth surgery, recovery and spectacular outcome.  Good riddance to that CC girl!
Willow

Willow