November 6, 2009 at 2:01 pm #31674
I’m glad to hear from you…I was just thinking of you today and wondering how you are? Re. ascites – here is what is happening for me – maybe it will help you. I had a sample of the fluid removed and checked for cancer, infection, bile…everything is clear so they are puzzled as to what is causing the fluid build-up. They biopsied my liver as well and everything is clear. I am taking Lasix (a diuretic) every day and it has made a HUGE difference for me. I am much more comfortable and I can enjoy my meals again. Walking after meals didn’t really help me much. I lived on cereal for a while because I could eat a bowl full of it and not be miserable. Let me know what your doctor says. I don’t think you need to suffer with a big belly.
To my knowledge, there are no Graeter Ice Cream shops in the Cleveland area. We have Stone Cold Creamery, Mitchell’s (made here in Cleveland) and Ben and Jerry’s….all the usual chain stores.
The weather here is changing too although I know we don’t get the same amount of rain as Portland. I really despise the time change – its dark at 5:30pm. Makes me want to hide indoors for the next 8 weeks.
Hope you are more comfortable soon.
BetsyNovember 6, 2009 at 9:19 am #31673
A friend’s daughter was married at Voodoo donuts and then had the reception in our garden. The guests were all extremely interesting looking young people!
Funny, it’s raining so hard right now a stream of water turned on the motion detector light! Well, Portland is a great town, really. But I’d pass on the Voodoo donuts. Not exceptionally high standards of cleanliness, in my humble opinion.
Anyway, the ascities. Its all of a sudden–in the last three weeks. Not sure that’s what it is (apparently the criteria is a quart of excess fluid). But eating (which I dearly love) makes me uncomfortable and my back brace doesn’t cover all the distension. My oncologist / surgeon is in Africa for her 40th birthday and when she comes back I’m going to ask her about all the potential remedies I’ve seen on this site:
drains (which may or may not work)
Lasix (which I think is a particularly powerful diuretic)
walking after a meal
living with a big belly (ugh)
I hope this doesn’t mean organ failure, because otherwise the disease seems to be progressing fairly slowly.
To answer your question I’ve done nothing since the recurrence except have the drain changed. Oh and treat the fevers, when they come, with antibiotics. So life goes on at a much slower pace, but so far it’s not been totally dominated by the cancer. Or maybe I’m fooling myself.
Well, good luck and good cheer to us all. –Cody
p.s. we spent three years in Cincinnati when we were first married. I still make the Cincinnati chili recipe. Are there Graeter’s Ice Cream shops in Cleveland?October 22, 2009 at 1:54 am #31672
I live east of Cleveland in Ohio. Its my friend who lives in Portland. He is an avid cyclist and writes for a local cycling magazine. I saw Voodoo Donuts on the Food Channel. Are you nearby? The donuts looked amazing! Although the bacon one looks a little too gross for me.
As for Netflixs, I joined for a while after my surgery and loved it! I LOVE movies, especially dramas, and would be happy to share my favorites with you. Watching them on the computer is instant gratification. Go for it! Especially with the colder temps right around the corner.
Are you getting chemo/radiation right now? I’m so sorry to hear your cancer returned. It just makes me so sad and angry, all at the same time. Can you resume with your physical therapist?
I was at the hospital today for a consult with interventional radiology. It turns out my protruding belly is full of fluid. I’ve been complaining to my surgeon about my belly since the end of Spring but I was told it was due to the surgery and it would eventually go down. But I knew something wasn’t right but just kept thinking, well, it will go down. But it didn’t, it kept getting bigger. I mean I can hardly reach over to tie my shoes! This doctor today is the first one to take the time to sit down and actually look at my scans.
So, next week, I’ll undergo some more tests and they will drain as much fluid as they can to make me more comfortable. He thinks one of my bile ducts is leaking but doesn’t see signs of cancer. He also put me on Lasix which has already given me some relief. I try to be my own advocate and ask the right questions but sometimes its so hard to get the answers. I am constantly second-guessing myself but as time goes by I’m going to work on doing less of that.
I love Patagonia!
Write back soon,
BetsyOctober 21, 2009 at 3:27 pm #31671
Thanks for writing! My section was in late January of 2008–then another surgery (I don’t remember that one) a month later, after a massive infection. I didn’t get a stent till September of 2008, after it was clear the infections weren’t going away. If all had gone well the stent would have been removed, after upsizing to a nice robust size. But during the February upsizing the CT scan showed the tumors had come back, metastasized to my lymph nodes and lungs.
Betsy I wish for you better luck!
Oh yes, skirts were wonderful this summer–Patagonia made a couple that rode low on the hips and made me feel much cuter. Well, everything is relative, including cute! Besides, I figure worrying about trivial stuff is more fun than worrying about this disease.
About exercise: after the news of the recurrence, I gave up the physical therapist I’d finally dragged myself to, but now I’m sorry. I’ve lasted longer and felt better than thought I would! Staying active, as many on this board have said (Jeff G. comes to mind), at least for a few hours a day, really helps. I take steroids and ritalin and my old jogging partners have been kind enough to turn into walking buddies (though failing ankles and knees make that an easier decision–isn’t it awful–when you get to 50 the wheels just start falling off, cancer or no cancer!). I find it’s very hard to work out by myself. I really miss my old swimming community. But walking is really all you need.
We do love Portland. We live in Northwest so we walk everywhere.
Where do you live?
I’ve never watched TV (too short an attention span!) but am considering Netflixs for my computer. Sometimes you just want comfort, so a cup of tea and an old movie sound pretty good (not to mention the popcorn and junior mints)!
Best to you,October 21, 2009 at 2:19 am #31670
Thanks for your reply. How long ago was your resection? I had a stent for several months after my sugery but don’t have one right now.
I agree with everything you said about trying to look like “your old self.” I would add to that feeling like my old self as well. I barely recognize myself anymore because of all of the changes I’ve gone through. I also try to wear make-up every day and find clothes to wear that accentuate the positive. I’ve always been pretty fit and thin and concerned (maybe too much) with my looks. I’ve had to change hair styles as well because so much of mine fell out. I’ve taken to wearing skirts this summer but won’t do pantyhose. I can’t stand anything that goes over my stomach because its so uncomfortable. The yoga pants are great as well.
I’ve been trying to do some light ab exercises but mostly I walk. I just can’t find the motivation to do any other kind of a work-out.
One of my very best friends lives in the Portland area. He sends me pictures and I must say it looks like a beautiful state. How do you like living there?
Well, its time to watch re-runs of “The Office.” Are you a fan?
BetsyOctober 20, 2009 at 7:34 pm #31669
Funny that body image still matters–cancer or no! But it does–maybe that’s one of the things that means “I’m still here”!
After the resection it took a long long time before I could wear anything but a wrapper. I gained 60 pounds (I was a swimmer and walker and not heavy to begin with). Which was very depressing and took till, oh maybe six months before it came off. During that time a friend went to Goodwill and brought me loose fitting dresses and jumpers (that I could wear with a t-shirt underneath, depending on the weather).
I’m pretty thin now but still can’t wear most of my old clothes because my stomach sticks out, yuck. There’s an Adidas exercise pant with a stretchy waistband I wear almost every day. Wish I could find another pair. Or yoga pants, if they are low-slung, work. Since I have a huge surgical hernia (which I would have had fixed if the tumors hadn’t recurred) wearing a back belt helps. That sort of disguises the whole waist problem too! I wear longer jackets that cover up things up (easier now that the weather is cooler).
The digestive thing sort of comes and goes. Do you have a stent? This board has been so helpful. I’m thinking about giving up cheese (which I dearly love, and which I had traded for wine, quelle deprivation), because a number of people here suggested dairy is hard to digest. Small meals are good for you…except I personally love to eat so much that’s hard too!
Anyway, taking care of yourself means looking as much like your old self as possible, in my humble estimation. I try to wear make-up every day. And I’ve got a great haircutter, who cut my long hair (what there was left of it) and made it look good when it was growing back in. And that made a huge difference too.
Very best of luck to you. And hey, you’re still here!October 8, 2009 at 3:30 pm #31668valjeeMember
I’m still in the dark on my itching I’m afraid. When I have the next round of blood tests my doc is going to check for antibodies to whatever list of foods i can provide as possible culprits.
It certainly seems allergic but i do wonder if there’s a relationship to the surgery & certainly to the huge amount of antibiotics I’ve had to take, which inevitably cause candida problems, which then makes you more sensitive….
I had a bile duct resection (May 14th ’09) only (only?), the docs were not at all sure if I had cc or not (I did, the tumour was at the cyctic duct), the surgeon had originally said that he would do a liver resection as a matter of course but as time progressed seemed to back off this option & his letter to the hepatologist said that the liver & pancreas ‘looked very healthy’ during the operation so he just re-routed everything else he could find, hence the digestive changes.
I’m due my next scan in November – I’m on 6 monthly CT checks, bloods more often, due to the abnormal liver enzymes, both my AFT & ALP are raised although the AFT had dropped by around 50% last month. I think that’s the right way around!
My main problem has been wound infection, it still hasn’t completely healed although having started using manuka honey dressings only last week it’s shown a staggering improvement. Only 6cm long & 5mm deep now – that from 8cm & 8-9mm deep a week ago (When I came home from hospital in June I had the whole 30cm ‘roof-top’ incision open).
I feel that having this almost constant infection (although low-grade) has been dragging me down for months & has to be affecting blood results. Time will tell I guess!
Good luck with yours next week – I hope everything remains stable – keep us posted!
Best wishes ValOctober 8, 2009 at 1:35 am #31667
I was wondering if you were able to find out what was the causing your itching? My itching was constant and not like a rash or hives. My ALT number has remained high but all of my other numbers are good. I go for my 3 month CAT scan and labs next Wednesday. I’m hoping my liver enzymes remain the same and that I can continue treating the partially blocked duct with medicine rather than another stent. I’m so glad for you that you have “cleavage” once again….truly something to celebrate!
When did you have your surgery and was it a liver resection? Mine was Jan. 5th 2009.
Betsy :coolOctober 3, 2009 at 11:03 pm #31666valjeeMember
I’ve also had problems with diet – I had thought that how it was with the drain into the bile duct is how it would be after the bile duct resection – oh no! Small meals seem the way to go, I find it much easier with white meat, fish, vegetables, fruit & not much in the way of red meat, cheese etc unless low fat versions.
As for clothes, my waist is still about 4 inches larger than before – fortunately i’d lost about 28lb prior to the operation so have been able to wear trousers that were about to go to the charity shop/ebay!
I find drawstring or elasticated waists are good, and as Kris recommends, anything which gathers under the bust then flares out is good – covers the baggy bum on the otherwise too large trousers as well!
On a positive note I haven’t been able to wear a bra since last December firstly because of the drains & then because i was so swollen after the surgery – well this week i did the usual monthly try out & HOORAY! No pain, no discomfort – the bras are back! Cleavage – YAY! I’m hoping the waist will follow soon….
I was very interested to read about your itching problem – I’m having problems with nettle rash (? hives) & seemingly two other rashes which keep coming & going despite constant antihistamines. I’m thinking nuts are involved as it’s always much worse after peanuts, but two of my liver enzymes are still elevated – I will do some research on that. It’s not like the itching I had with the jaundice – that was horrendous & constant, which this isn’t.
A day in bed is extra special therapy & always allowed! Enjoy it.
Take care, ValSeptember 30, 2009 at 6:55 am #31665devoncatMember
There are so many shirts now that gather just below the breasts and hang loose the rest. I have several and were great after surgery. My mom also went out and bought some fabric that is gathered at the top and then hangs down…it looks kinda 70ish. We sewed 1 seem and had a dress that I lived in after my 2 surgery.
The statistics of this cancer are very scary, but none of us know on which side of the statistics you may fall. Plus, statistics are already old by the time they are published. And the good news is that the statistics have improved slightly, so who knows what they really are now and in relation to you.
KrisSeptember 30, 2009 at 3:45 am #31664tiapattyMember
Welcome aboard! And don’t forget, if you are fighting this cancer then “courage” is your middle name and curling up in bed is always allowed.
I will say the suggestion about maternity clothes is a good one, my friend is pregnant and the other day she wore the cutest top, I think she got it at Target. If anyone gets nosy and asks what you’re having, tell them the doctor said about 5 or 6.
PattySeptember 30, 2009 at 3:05 am #31663barbMember
sorry you are having a tough time. as far as your food intake goes, it’s been 3 years since my 3rd surgery and i still take “creon 10” (a prescription) 3 times a day with meals. it does help with digestion.
you might try to find a registered dietitian who specializes in oncology. if you can’t find someone via the hospital where you were treated, you might be able to get some help via the American Dietetic Association.
good luck Besty, hope you find some relief soon,
barb hSeptember 30, 2009 at 1:39 am #31662daddysgirl-2Member
Hi Betsy, welcome. Wishing you only good things and sending you good thoughts. Sorry, I can’t offer any suggestions however, even though our temps will dip to 23 degrees tonight, I can offer you warm Minnesota hugs.
JoleneSeptember 30, 2009 at 1:20 am #31661
Thanks so much for your quick response. I’ve been on this website since my diagnosis but never had the courage to get involved. The statistics about this type of cancer are frightening to say the least. But I’m finally starting to have some good days where I can feel positive and calm. However I still have those days where I retreat to my bed, watch TV and assume the fetal position!September 30, 2009 at 1:06 am #31660marionsModerator
Hello Betsy…..Welcome and I am so happy that you have found us. But, don’t we all wish it to be for different circumstances? Nevertheless, I believe, if confronted with this cancer then this site is the place to be for support, knowledge sharing and a sheer sense of belonging to this select group of people touched by this disease. Our surgeon spoke of “replumbing” when discussing the resection therefore, digestive issues don’t seem to be an uncommon side effect. Our JeffG pointed out the benefit of stool softeners at times, before food intake in order to stay regular. Small meals and walking around especially, after eating appear to beneficial. The swelling of my husband’s abdomen took some time to recede however; I don’t recall it lasting more then 6 months. But, others may be able to share more information with you.
I am sending my best wishes your way,
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