rose-may

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.

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.

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.

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.

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…..

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….

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.