1

(6 replies, posted in General Discussion)

Hi!

I am recovering from the aborted liver resection and it's just plain hard to sit up straight in a chair and type, not to mention all these heavy narcotics affecting my fine motor skills and not letting my fingers hit the keys I tell them to.
I just updated the caring bridge site a few minutes ago.

http://www.caringbridge.org/visit/rosebarlow

Good attitudes certainly help you cope with things better and improve the quality of life, but don't necessarily change the course of events.

I wnt in for surgery on March 25 and the operation was aborted upon discovery of several tumors on the lymph nodes near the aorta, outside of the liver.  The surgeon described them as a "string of pearls" and couldn't tell me how many there were, more than 10 for sure.

Still in hospital wired up and heavily medicated so much doing much typing but thought I'd share here on this thread.  Attitude is still good believe it or now, but big paradigm shift happening and needing a new treatment plan but I'm not ready to do any big decision making until I get these blasted tubes out of me, can put regular clothes on and think from the comfort of my own big cozy recliner at home.

I will give details of this update tomorrow.  I am quite tired and used up the last of my energy updating my caring bridge site:

http://caringbridge/rosebarlow

4

(14 replies, posted in General Discussion)

I spent the day on the phone and finally got some answers about the surgery.  I guess the surgery is a go for Wednesday morning, they will contact me tomorrow with a time and pre-op instructions.

I also discovered I had a clinic appointment early tomorrow morning that I was not notified of, so they canceled it (I live two hours out of town).  Also I learned that the NP was supposed to have done a bowel prep, whatever that is, and failed to do that, I never even heard about it. 

I do plan to file a grievance (after the surgery) because I feel my case has been mishandled by the failure in communication.  It has been at cost of my health and mental stress and delayed my surgery for over 2 weeks.

I am hoping for better treatment now that I'll be front and center on the operating table and a little harder to ignore. 

After surgery if follow-up care continues in this vein, I will definitely be looking to change doctors or facilities.

Thanks for your supportive replies, it really helps.......

5

(3 replies, posted in Thought for the Day)

I just noticed you are from Wisconsin....which hospital are you being treated at?  I'm from Viroqua, being treated at the University of Madison.

6

(3 replies, posted in Thought for the Day)

I think jaundice is par for the course with cholangiocarcinoma.  Usually it is the first clue that leads to the discovery of the cancer.

Making the jaundice go away is one of the goals for treatment, and the stents are the main procedure used.

I am learning from personal experience that there is often complications with the stents either not working or getting plugged up and many people have two or three stent placements before they have a successful lowering of the bilirubin.  I'm on my third which involves an external tube and bag, and this one is finally working, my bili went from 15 to 8.6 within 10 days, so don't give up hope but don't be surprised if you need some adjustments done before you succeed.

7

(14 replies, posted in General Discussion)

Warning:  VENTING!

I am getting so frustrated with the hospital that is involved with my case.  I feel like I am out in left field trying to cope with all the symptoms, pain and downward progression of this cc by myself.

I have virtually no communication from the hospital and at this point don't even know what is normal to expect for communication.

For example I have a major liver resection scheduled for Wednesday, it's Monday and I have had no confirmation on surgery, no time or preparation briefing, no check-in to see how I've fared with this last stent replacement since the procedure was done over a week ago.

I haven't had a sit-down talk with a doctor where they explain what my diagnosis is about, what to expect, how to proceed, who to contact when I'm having problems.....

I'm having all kinds of problems with this new stent, from losing 6 more pounds this week to only peeing twice this weekend and not yet today, to constant pain in the stent area and can't get the saline flush to go through the line......who am I supposed to call?????

I get such a runaround.......the first stent that didn't work took me 2 weeks to get replaced and when I was trying to call to tell them I think something is wrong with it they referred me to a pychologist, I guess they thought I was a pest or freaking out or something. 

I feel like my life is on the line here and I have to beg for help and don't know who I am supposed to call.....it's been so frustrating.  Is this a typical hospital experience or not???

Funny this thread got resurrected because I'm dealing with this very issue right now.  I'm on my second external stent and the pain at the site where the tube exits my abdomen has been very problematic.  I'm also experiencing back pain that is getting more and more intense.

I can't stand up straight becuase it pulls on the tube so I walk around a little hunched over, bending over hurts, laughing or crying hurts, taking too deep a breath hurts.  The whole thing is very unpleasant.

My tube exits in the center of my belly, and I do experience pain from time to time on my right side which I assume is the tumor pressing against nerves.

Eating intensifies the pain, it's like having food in my belly pushes against the drainage tube and really hurts, I can only eat small portions, some days it's hard to even drink water becuase of the pressure pain.

Flushing the drain with the saline water is also difficult because it creates more painful pressure and I dread it.

Apparently there's not much to be done about it.  The doctors seem to be happy just to hear that it is draining and seem reluctant to do anything unless it gets blocked up and stops draining.  Meanwhile they just recommend pain pills to deal with it.

I am supposed to be getting myself strong for surgery this week, but this drainage tube is making that very difficult, and I am shedding more weight (6 more pounds this week!) and feeling very dehydrated.  I am hoping I can at least get some IV fluids to relieve the dehydration symptoms.

Very frustrating, feel like I just have to hang on as best as I can while waiting for the verdict about whether the surgery is a go or not.

Thank you for ressurecting this thread.  My story is so similar to Patty's except that I am just at the beginning and haven't gotten to the surgery yet, which is scheduled for this coming Wednesday.  The stories about people being opened up and declared unresectable are difficult to hear but if that happens to me at least it won't be a complete surprise. 
It is encouraging to hear how well Patty is doing despite being unresectable, it gives me hope either way.

My partner has been reading up on electrohyperthermic treatment for tumors.  Apparently it is very common in Germany and has a high success rate at killing tumors and then the body reabsorbs them somehow.  anyone familiar with this?

11

(4 replies, posted in Members' Cafe)

I live in the beautiful Kickapoo Valley in Wisconsin.  We have so many small family farms and artisan cheese and bread shops, the food around here is so fresh and wonderful.  We also have a huge Amish population.

My community has been absolutely incredible in supporting me through this.  They are even holding a fundraiser soon for me, and have opened an account for me at the local food co-op that people donate to so I can get supplements and healthy foods without having to worry about cost.

We are a short drive from the awesome Mississippi River and have lots of woods and fields and springs and nature in abundance.

Right now it is maple syrup season and many people have their taps in  and the sap is flowing, pancake breakfasts and horse and wagon rides.....

I think about you a lot, Lisa, especially as my liver ressection is looming and I cannot even imagine how devastating it is to hear that the resection is unsuccessful after being given hope like that.  It's essentially all palliative care from there and I admire the courage it must take to live in the presence of your mortality.

I follow along on your blog and am inspired by your faith.  I am glad you will no longer be working and can concentrate on living life to the fullest.

13

(19 replies, posted in General Discussion)

Well I went in Tuesday for a biliary drainage tube replacement.  They put in a larger diameter and also shoved it further up into my liver to drain more bile.

Talk about painful!  I think coming off the sedatives was the worst pain I've felt yet since this whole ordeal started, like a horse standing on the tube insertion site.  Thank god for demerol and quick relief in the IV.

I have not been able to sit up and type since then but today I am improved enough.

Had blood draw done today and have come down two points on the total bilirubin.  I am now at 11 and need to get to 7 for liver ressection surgery on Wednesday.

I am actually eating a little better which is really hopeful as I pretty much gave up on eating with the last tube.  I lost a few more pounds, though, up to 20 pounds lost now which is bothersome, I didn't have that much to spare in the first place. 


I think to myself what a horrible ordeal this is already and I haven't even had major surgery yet, and then I read all these other stories and see that this is nothing out of the ordinary for this kind of cancer and so many have been through much worse with infections, ascites, and other health problems complicating everything.

I am with EVERYONE on this board in solidarity and pray for strength and mercy.

Carol:

I am feeling for you, especially as I await a liver resection myself and am already having all kinds of digestive issues from the stents and biliary drainage systems, so the thought of more of the same after surgery is unpleasant indeed!

I too am young, 45, so you can see you are not alone by any means in the age category.

I am so sorry about the discovery of something in your lymph node, one of my great fears, to go through all this hell of prodecures and major surgery and still have all kinds of problems down the road. 

I keep positive by still hoping for the best but it gets hard to do when I hear all these stories about what seems to be a downward trend with this kind of cancer. 

Keep coming back her for support, it makes a world of difference to dialog with people who understand like no one else can.

15

(19 replies, posted in General Discussion)

I guess it's back to the hospital tomorrow to have the stent adjusted, procedure #3.  The surgery is pushed to March 25 and hopefully this stent will do the trick.  What an ordeal!!!!! 
It's so hard to keep stayong hopeful but what choice do I have?
All this and the surgery could be aborted if they discover anything they weren't expecting to see, like cancerous tissue that didn't show up on the MRIs or lymph node involvement. 
Thanks so much for all the support and love here on this board, it's a real lifesaver.  Most people simply have no idea.......

16

(19 replies, posted in General Discussion)

I had an external stent placed on Tuesday March 10 after the first attempt at an internal stent failed two weeks earlier.  My liver was completely obstructed for several weeks before the external stent procedure.  They said it was backed up and under so much pressure that they had quite a time controlling the drainage while they were placing it,

They scheduled a liver resection for March 19 believing that the bilirubon levels would be down to an acceptable 5-7 total bili by then.

Well, today is March 16 and I had a blood draw down and the numbers are beginning to go up instead of down and my total bili is at 13.  It looks like we'll be postponing the surgery yet again.

Meanwhile I am quite concerned.  Why are the numbers going up instead of down?  Does that mean the stent is not working?  I am getting between 350-400ccs of fluid in my bag each day.

The fluid is a dark yellow rather than dark green, if that means anything to anyone.

I am worried that I suffered too much liver damage from the prolonged congestion and that my liver is simply not recovering enough to properly process the bilirubin.  I worry that if my liver is damaged that much than surgery is no longer an option.

I also worry that this tumor will continue to grow and possibly begin to inhabit lymph nodes, etc while I am waiting so long for the surgery and at some point it will be declared unresectable.

Does anyone have experience with stent failures and operable livers being declared inoperable?

17

(41 replies, posted in General Discussion)

This discussion has taken an interesting turn and I have contemplated whether some of these procedures do more harm than good myself.  For sure the stent placement is absolutely necessary when there is a complete physical obstruction.

I wonder about a lot of the drugs that get ofered.  I've been offered narcotics to use as needed for pain, anti-nausea medicine, stool softeners, anti-itching meds, anti-anxiety meds, antibiotics, blood thinners and more already.  If my liver is congested from the obstruction how can I process all these drugs properly? 

I worry when I am in the MRI machine that the frequencies excite and stimulate the cancer cells.....

Thank you David for your encouraging words.  The stent placements were ordeals enough in themselves, I can only imagine what the surgery recovery will be like, but I am so ready to walk through that fire and get to the other side of it where I have a better shot at survival.

I go in with a lot of uncertaintly as they could open me up and find it gone into the lymph noedes or othe canderous tissue that didn't show up on the MRIs and abort the operation.  Here's hoping that is not the case and I'll wake up out of the anesthesia with a high-five.

Your post makes me hopeful as I face major surgery on Thursday and have not had any other treatment other than stent placement to relieve liver congestion so that it can be operated on.   The whole course of this cancer and treatment are hinged on how the operation turns out and stories like yours give me hope that I have a better shot at this than I think I do....

20

(18 replies, posted in Introductions!)

Speaking of bird stories, check out this one! Beautiful!

http://www.snopes.com/photos/animals/freedom.asp

21

(18 replies, posted in Introductions!)

I have a bird story to share too.

The day after I recieved the news that I had a possible tumor in my liver/gallbladder I had undergone a bettery of MRIs and a CT scan.

As we sat in the GI specialist's office to hear the verdict, it seemed like it was taking a while for him to get to us.  My companion decided to open the blind on the window so we could look outside and see the sky.

The landscape that we could see from the window was one of hospital rooftops and buildings.  We could not see trees or any other natural thing.

Suddenly a bald eagle lifted off from one of the rooftops and circled around near our window.  I said, that eagle has a message for me, doesn't it.

Sure enough the doctor confirmed a suspicion of cc soon after, and while it hasn't made the shock and aftereffects any easier, I do feel the presence of a higher power guiding me through this experience.

22

(7 replies, posted in Thought for the Day)

I can't help but think of Kermit the Frog's theme song when I read these posts--"It's Not Easy Being Green".  I change it to "It's Not Easy Being Yellow" when I need some comic relief from this cursed jaundice.

23

(3 replies, posted in Nutrition)

Nux Vomica is a homeopathic medicine.  Homeopathics are an interesting branch of alternative medicine and are supposed to work more on an energetic level and tend to be prescribed according to symptom pictures that individuals experience.

I personally have had no luck whatsoever with homepathics, so I am rather skeptical, but they are completely harmless.  Either you get a dramatic relief of symptoms from them or nothing happens at all.

http://en.wikipedia.org/wiki/Homeopathy

24

(12 replies, posted in Grief Management)

I think it's holy moments like those that make death tolerable for us, and even beautiful in a way. 
Thank you for sharing that experience.   You are so fortunate to be near the ocean, I miss it terribly.....

25

(8 replies, posted in Introductions!)

Hi Terry;

I appreciated your message very much.  Today  I let myself get a little worked up over things.  I had this great plan to get the stent put in, get my liver draining, relieve the sypmtoms, eat the most nourishing foods, get my health up to a high degree, get the surgery and presto!  go on with my life.

At some point today I came to the realization that I am not in control of this thing....as you said, I didn't cause, I can't change it and I certainly can't control it.   It reminded me to turn it over to God and walk by faith and not by fear.  Somehow I have to trust that all things are working together for the good.  And yea though I walk through the valley of the shadow of death I will fear no evil.  Such comforting words.

I have had no real follow-up care since they placed the stent two weeks ago other than monitoring my blood via my local clinic.  I go in tomorrow for a consultation and should get a lot more info about what kind of treatment plan they have in mind under the circumstances.  All I know is that this itching is crazy-making, it's been going on for over two months with no relief of symptoms and I just have to have some kind of intervention soon.  I feel like I can handle pain more than I can handle this cursed itching.

Interesting tidbit:  Did you know that many monks wear horsehair shirts under their robes to purposefully cause itching and discomfort as an act of penance?  Some even sleep in them.  I'm sure God must shake His head in wonder......