kristin
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I’ve been drinking dandelion root tea. I have an exterior bile drain (and bag) and a couple of times the bile turned kind of thick and goopy– I drank some big mugs of that tea, and it went back to normal. That doesn’t prove anything, but it is a traditional remedy.
Hope this helps!
Hi Jtoro,
I’m so glad that you’re seeing a counselor, that should really help you.
Unfortunately, what Isisman said about my tumors just maintaining is no longer true– they have started giving me trouble, and I’m going to need to start chemo before too long. But this is more than 6 years after my diagnosis and resection.
One thing I’ve found that has always helped me with scary thoughts is to stay close to “here and now” as much as I can. In September I start chemo… next week maybe something could go wrong with my bile drain… but RIGHT NOW, I’m OK, it’s a beautiful summer morning. Next year I may be really, really sick (or even dead)… but RIGHT NOW, I’m OK. Even in the doctor’s waiting room– maybe I’m going to hear horrible news 5 minutes from now… but RIGHT NOW I’m OK. This is not “staying positive” it’s just the truth.
Wishing you all the best,
Kristin
Honey, from all your posts here, I sense that you are really overwhelmed with your thoughts and fears spinning around and round endlessly in your head. I think you really need to be able to talk about them with someone, more than you can now. I agree with Katja that a therapist could be a big, big help for you.
If you don’t know how to find one, start by asking your doctors and nurses, friends, or even ask your insurance company for a list of therapists (psychologists, psychiatrists, social workers) included in your plan. A nurse helped me find a social worker for my husband– he’s the caregiver, but he’s having a much harder time than me.
Many blessings to you and your family!
Kristin
Andy, that’s TREMENDOUS! We’re so happy to hear your story. And it’s a big help to me personally. I’ve been putting off chemo as long as possible, because so many people assume it “won’t really help”, but now my oncologist is saying it’s really time for it. Hearing your experience is so encouraging for me. Thanks so much for posting it. And welcome to our group!
My best wishes to you,
Kristin
Yay, congratulations! So glad he’s feeling better, and capping off the external drain bag is a real step forward. I hope they’ll do that with mine… someday…
Wishing you the best of luck!
Kristin
PS My husband knows an interventional radiologist online (from a political chat group) and this guy told him that problems with blood clots in the bile drain tube after a test like that are “not uncommon.” Wish MY docs had known that!
Thanks you guys! It always perks me up to come here. The drain has actually been behaving better for the last couple weeks– I only have to change the dressing every 2 days now (knock wood!!) not 6 times a day, like before. AND a couple of nights I’ve actually been able to sleep on my tummy for an hour or two. Heaven!!
Lainy, as for the white and blue, the hospital blankets and sheets were nice and white, and I felt pretty blue about missing the July 4 fireworks– couldn’t see them from my room, because it faced the wrong direction!
Hugs to all,
Kristin
Never smoked, don’t drink, 18-mile-a-week runner and weight lifter, healthy vegetarian diet… and diagnosed with cc at age 46. I was just unlucky.
Sometimes there just are no “reasons” for things, and we only make ourselves miserable trying to come up with them.
Oh, and one more thing I forgot to say in my earlier post– it’s quite posible your abdominal pain had NOTHING to do with the cc, and they wouldn’t have found cancer even if you HAD gone back to the doctor.
That pain I had went away after two days, and they later concluded it was totally unrelated to the cancer– something to do with my esophagus, that fixed itself. Cancer normally does not cause any pain in the early stages, especially cc, and that’s what makes cc so sneaky and hard to diagnose.
So– back to the present moment– what are you doing this 4th of July weekend? I hope you can go out and enjoy a fantastic fireworks show where you live!
All my best wishes to you,
Kristin
Oh yeah… And I’m SO tired of friends’ cousins who come bubbling up to me with some book about how someone cured their early-stage breast cancer with fasting/ cottage cheese/ rays of colored light/ soybean extract/ breathing exercises. Then they always insist that I must MUST try this! Now! Immediately!
Arrggghhhhhhhhh!!! (says Ms. Hippie-Holistic-me.) Do they think I’ve really been sitting here for 6 years without doing any reading or research of my own?!
Kristin
Sometimes it can take a very long time to get a cc diagnosis– more than 6 months, in my case. It’s a very, very rare cancer and most doctors have never run across it.
When I showed up in my doctor’s office for a skin problem and mentioned I had mild abdominal pain, they figured that since I was female and middle-aged, it was probably my gall bladder. It took (let’s see) blood tests, a stomach xray, an ultrasound, a nuclear scan, multiple CAT scans, an MRI, an ERCP, and a needle biopsy to come up with a diagnosis– and even then, they weren’t 100% sure until I finally had surgery and they took the tumor out.
I think you will feel better if you start thinking more about the present, and not about a past that you cannot change. Try to find something good to enjoy every day.
My best wishes to you–
Kristin
Hi Cheryl,
I’m really sorry about this long delay in replying to your post– I was up north visiting with my family for a few weeks and couldn’t go online much. To summarize my story very briefly, in 2/04 I was diagnosed and had a resection with no follow-up treatment; 9/06 I had a recurrence and failed surgery (the tumor is on a blood vessel) followed by 7 weeks radiation and Xeloda. The tumor was basically stable until 3/10, when it started giving me trouble again, though they couldn’t find the growth on any CAT or PET scans. Finally they realized that the tumor had grown somewhat and was squashing my bile duct against my liver, and they put in an external drain.
Next week I go for another CAT scan and then see my oncologist to decide what we’re going to do– he thinks chemo with gemzar and oxaliplatin. So, the adventure continues! But I have been officially “incurable” for 4 years now, and have had the disease for about 7 years (it took a long time to get the symptoms diagnosed.) I still have lots of hope, and like you, am trusting in prayer.
Congratulations on your fabulous results from chemo!! I hope those drugs have walloped your tumors so bad they’ll just plain give up. (I like to think that I have a very lazy, wimpy tumor…)
Wishing you all the best–
Kristin
I join everyone else in welcoming you, and I would like to add that the stent will make your mother feel sooooo much better. When bile can’t drain and goes into your blood, it doesn’t just cause jaundice, it makes you feel HORRIBLE– itchy, nauseous, sick, and weak. I went through two months of that. They couldn’t give me a stent, but instead I now have an external bile drain to a bag on my side, and that makes a huge difference in how I feel. So I agree with Marion, you should try to get them to place a stent as soon as possible.
Wishing all the best to you and your mother–
Kristin
