cody-curtis
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Hi Kris,
Thanks for responding. I love love love reading your posts–your openness and your sense of humor. We put in a new garden this spring when I didn’t think I would make it to Memorial Day, and my husband loves it. So I figure, like weeds, I’ll always be with him!
Anyway, that’s interesting about the re-routing. Am going in for a stent change next week so I’ll ask about that.
I’ve started and stopped on the steroids several times, mostly because they make me so hungry. But the palliative care doc convinced me not to worry about weight–the steroids help me keep muscle longer, which means I can walk and garden and do the things I love longer. I take 2.5 mg of oxandrolone a day. What kind are you taking?
All the best,
CodyHi Betsy,
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)
diuretics
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?
Hi Betsy,
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,
Hi Betsy,
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!
Hmm. Lee your dad’s situation is interesting. This is supposed to be a slow growing cancer, but it’s unclear what happens when you find and treat said beasts.
My latest CT scan, after a biliary stent change, showed the biggest tumor in my (previously resected) liver had doubled in seven months. Should that be “only” a doubling of the tumor? That’s what my surgical oncologist seemed to think.
Kris your tumor is indeed impressive! Mine’s only a bit over 4 cm now. My oncologist said the liver has lots of redundancy, and in her opinion, the tumors haven’t “exploded.”
She is more worried keeping about keeping the stent from occluding again than about the tumors in my liver (and lungs and lymph nodes). Does that make sense to you all? I’m having more pain, but am hoping to make it through Christmas with the family.
Any thoughts / similar experiences would be very welcome!
best to all–so wonderful to share with a community that totally gets it!–Cody
Hi Louise,
Sorry to hear about your mom.
The therapy I’m on was developed by Eduardo Bruera, chair of palliative care at MD Anderson. It’s for any terminally ill cancer patient who wants to stay active as long as possible.
Here’s the recipe: oxandrolone (I’m taking a “geriatric dose”), Tylenol three times a day, and 1800 mg of fish/flax oil plus 400 mg of vitamin E.
Add an appetite stimulant for people who need one (not yours truly!)
Add exercise.You’ll need to check with your oncologist, since steroids are hard on your liver. But this is a very small dose (2.5 mg twice a day), with very few side effects even at higher levels (which is why women athletes love it–no telltale masculinization).
Amazingly, I felt better the very next day, and had enough energy to go berry picking with our daughter, home on vacation. I’ve been on it for two months now and no longer dread simple things like washing my hair.
If this helps anyone else with the “quality of life” stuff, that’s great.
And Lainy no, while I used to love, love, love, chocolate, that impulse has never come back. But red licorice–now that’s another story!
All the best of luck to you. I’m glad this forum is here. –C.
