walkingthepath
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It”s more localized, I think, than gas pain. Worst spot is the right side at the bottom of the belly, and spreading to the belly button. Discomfort and frequent cramping throughout the abdomen though. Distension comes and goes but always some swelling. I pass a LOT of gas, and we haven’t seen blockage in the abdomen scans. Also recently started burping a lot recently, and the burps make the catheter insert sites hurt. So they will be keeping me here in the special care unit for a while to try to figure it out. Dang it’s hard to type in bed with one hand splinted to keep a transducer in place below the wrist and an O2 sensor on the first finger mashing the caps lock.
Bit of a setback. Temperature spiked and blood pressure dropped. Back in the hospital being treated for infection in the biliary catheter. Replaced that and found out the right bile duct was also blocked so now I have two catheters and two bags. bonus Checked out for ascites and found very little fluid in the abdomen, not enough to explain the distention and ab pain. Might be gas but how would that get there? More tests to come, I suppose.
Oh, and thank you for the suggestion, Andrea. I like V8 a lot. I can only drink a glass or so before I get full, though. I like to put lemon juice or lime juice in it, maybe my body is telling me what it needs. It’s even better with Worcestershire sauce, pepper and a little hot sauce with a celery stick.
Yes, my awake hours have been altered by so much bedrest. Wanted to add something to the acupuncture story – when I saw the doc I could barely take half a breath because of the pain from moving my diaphragm. After one treatment I was able to take full breaths with almost no pain, and that has lasted from Thursday through he weekend. The relief was immediate. Something to think about for those thinking of alternative medicine. I’ll start a a post in the alternative section when I get more experience.
Hi marions! Itching is less, yes! Not gone, but less. I doubt that’s from the herbals – only a day and a half – but better is good!
Went to Dr. Zhao in Sarasota, really nice guy. Turns out he was a liver specialist for five years in conventional medicine. He’s going to work on making me feel better while the tumors are being fought by Moffitt. Got acupuncture, which made me feel really good for the rest of the day, but then the next day I didn’t want to get out of bed. I probably overdid it on Weds and Thurs with too much activity. Also started me on an herbal supplement to pull the bilirubin and toxins out – “Ai Kans”. He mentioned indigo in particular as one of the herbs in the supplement that helps remove bilirubin. I’m also starting on a liquid oral preparation designed to fight cancer – “Bing da ling”. This is interesting, I read about Bing da ling before I started Therasphere. It was shown in a clinical trial to be effective shrinking tumors in concert with certain chemo drugs for certain types of cancer. CC wasn’t one of the types listed, and I’m only on radiation so far, so I’d forgotten about it. Hope it works.
Regarding the bilirubin rise – he explained that when the liver is as damaged as mine (cirrhosis from the tumor), the bilirubin will leak from many places because the scarring makes it hard for it to flow into the ducts.
Thank you all for your suggestions! As I’d hoped the tube is becoming less painful though I did pick up a surface infection – right at the insertion point so of course that will take time to heal and stop hurting. I am drinking as much water and green tea as I can take, I have to cut back when my cranky bowels yell, “Basta!”. My GI tract takes a long time to recover from whatever sedation it is that they use. Who woulda thunk making a poop could be so satisfying? All in all feeling better though still yellow – I take comfort in knowing that inflammation might be a cause because I know for sure I’ve got that!
My takeaway from this whole thing so far – if I’d known this was going to happen to my liver I would have done a lot more drinking in my youth.
Going to see a traditional Chinese doctor today who has lots of experience with cancer patients and confers with the docs at Moffitt, I’m hoping to get some other angles on cause and treatment.
This is a great resource! Thank you for your support.
MichaelAsk the doctor’s nurse before the appointment if the doctor is open to being taped, which will also give him time to not be surprised when you bring your recorder. If the doctor balks after you explain why you want to tape the session, get out paper and pencil and start writing. Or bring a friend who is a good writer. Unfortunately some doctors are just too worried about malpractice suits. But don’t miss the chance to ask every question you can and record the answer the best way you can. Write your questions down before you go. If you don’t understand or didn’t get an answer, ask again. Check your gut … If your heart tells you your doctor is unsympathetic – find another doctor! You and your caregivers must be a team.
Peace.MustangMort, keep your sights high and far into the future, but cherish every day. Happiness and good feelings = good body chemistry and strength, depression and lethargy = not so much. We’re walking this road together and I hope to have your company for a long, long time.
MustangMort, No, no lymph nodes involved. I was nervous about having a PET scan because I pushed hard for it to be done – but if any other sites were involved they told me I would not be a candidate for Therasphere. My primary care doctor and GI internist had suggested the possibility that the tumor might have come from somewhere else, maybe the skin (this is Florida, after all) and I wanted to rule that out. I was a little bull-headed with my treatment team about finding out if there was any more bad news, but I was also really scared that there might be. And in truth I wondered for a long time if maybe the clinical trial team wanted me in only because I am a “healthy” candidate and didn’t really want to know if there was anything else. I’m happy to say we had a very frank discussion and put that fantasy to rest. All the staff at Moffitt from valets to intake to nurses and doctors are fantastic, they are very easy to talk to, empathetic, caring and patient.
Looking at what your story I have to say that I haven’t been through half of what you’ve been through. I don’t know if Therasphere is right for you but there are trials that are recruiting sort of close to you at Northwestern University and at UC San Francisco. The NWU trial is different from the others – they are using a chemo drug in combination to see if it makes the yttrium90 more effective.
It does look like you are in excellent hands but don’t be afraid to ask lots and lots of questions of your doctors and if you don’t understand the answer, ask again. Write down your questions at whatever hour or place you are when you think of them and take them with you to your doctor. Take lots of notes for when you forget something later or bring a companion to take notes for you – a second person might remember to ask something you missed. And if your treatment isn’t working get a second, third, even fourth opinion. There are a lot of dedicated people working to heal us but they haven’t come up with a one-size-fits-all yet. We may win this or we may lose but we’re not going down without a fight! Peace and good thoughts for you and yours.@mustangmort, the large tumor is on the lower lobe of the liver over the gall bladder (well, where the gall bladder used to be) but also extends into the liver and around the main bile duct. When they went in with a scope on July 5 they found the tumor wrapped around the gall bladder, literally crushing it, and they had a hard time getting the duct to the gall bladder free. They took a fairly big section out with the gall bladder but because they were doing it from a scope they didn’t take everything. And from what I learned later they wouldn’t have been able to anyway. Not sure of the exact details of how it’s intertwined inside the liver but if I understand my doctors correctly it’s wrapped around enough of the main duct that it is not a good candidate for resection at this point. Our goal is to shrink the tumor enough that resection can be achieved with minimal reconstruction. Honestly I’ve had a long discussion with myself, my family and with the doctors asking why we couldn’t just cut the stinkin’ thing out and I am confident with the doctors assessment. I should also add FWIW that I am a white male 54 year old, non smoker (quit about 20 years ago), was taking simvastatin and before that Vytorin before it was taken off the market. Stopped taking the statin after the treatment because I want to eliminate any possible stress on the liver. (Shame – a beer would have been nice while watching the games this weekend…) I have a very high-stress job – this last year was really tough and probably weakened me and allowed the cancer to take hold. I am working on making my job less stressful. I’ve told my supervisor that when I get tired, I’m leaving – period. My company is being very supportive! Also, Blue Cross Blue Shield has been paying without question which has lowered my stress a lot. This has been very expensive – with the ER and gall bladder surgery included I’ve incurred over $200,000 in bills and my family’s share so far is (only?) about $6,000. At least my yearly deductible has been met
