kristin
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Jeff, your story about your Grammie was beyond heartbreaking… I can’t find the words for it! I admire you so much for having the courage to go back and revisit such a horrendous time in your past, and to get through it and find peace.
You inspire me in so many ways.
Kristin
My period actually started while I was in the hospital recovering from my first surgery, but it was lighter than usual, and it was no problem. I had my husband go out and buy me a box of tampons, and was able to do everything else myself. If you’re really worried, ask a nurse before you go in the hospital and they can reassure you. You will hardly be the first patient that has ever had this happen.
Please don’t worry about small things like this now– just concentrate on building up your strength, and enjoying every day as much as you can!
I hope everything goes brilliantly well for you!
Kristin
I’ve often joked to friends that I’m going to start the Bile Duct Cancer Marathon– I’ll be the only runner in it, so I’m guaranteed to win!!
And our ribbons?? Why, bile green, of course!
Kristin
I’ve had surgery twice (the first a successful resection, the second unsuccessful on the recurrence) and what helped me a lot was getting myself as strong as possible beforehand, by eating a lot and exercising right up till the night before my surgeries. Then afterwards, get up out of bed and move around as early as you can (even though it feels WEIRD inside– not painful but spooky, because things have been rearranged.) The more you get your blood circulating, the faster you heal.
I’m writing this from a hotel room in Rochester, MN, where I have my appointment at the Mayo Clinic tomorrow.
The best of luck to you!
Kristin
I’m not overweight, never smoked, quit drinking 19 years ago, have run 18 miles a week for the last ten years, and can do straight-armed push-ups (= “boys’ pushups”) at age 50.
More evidence that this disease has no rhyme or reason…
Hi Mark,
It’s great to “meet” you!
Wow, you’re a drummer, that takes an awful lot of energy!
Like you, I spent many months trying to find out what was wrong with me and it took six months before I was actually diagnosed. So I’ve had CC for five years now, and I’m still alive and kicking (with various bumps and detours along the road– I’m probably going to have to start chemo soon.)
What kind of music do you play?
Kristin
Irene,
I can totally sympathize–when you are having no symptoms and feel fine, it seems so unreal, and that makes it even harder to make decisions. My first time around, after the first tests and scans found something drastically wrong but couldn’t pinpoint it, I actually blew it off for four whole months until my PCP implored me to go back for a biopsy. Even then, nothing felt “real” until I finally started itching unbearably.
I had surgery and never regretted it. Yes, I felt like I’d been driven over by a semi truck afterwards, but it got me almost three years of cancer-free life, and I enjoyed every minute of every day. I had a recurrence and the tumors are progressing again after radiation, but without the surgery I never would have gotten this far.
And keep in mind that you are a lot younger and probably a lot stronger than many people who get CC.
Not meaning to influence your decision, but these are some things to think about.
Wishing you peace, hope, and healing–
Kristin
Hello all,
I now have an appointment to see Dr. Alberts at the Mayo Clinic on August 14. Thank you all so much for the info and encouragement you gave me.
It actually doesn’t bother me to wait a few weeks– my CC has been very slow growing, and I try to spend as much time outside of “cancer world” as I possibly can. My current oncologist had already agreed to let me wait until Sept. to start chemo so that I could enjoy the summer. Now we’re planning to spend the time until the appt. up at my family’s summer cottage in Wisconsin, a place where I have many happy memories.
Many blessings to all of you!
Kristin
Sara, thanks so much for the recommendation! I haven’t heard back from them yet (they said 2-4 days, and today is day 4) so I’m going to call again.
I had a really good weekend, went blackberry picking with a friend and sewed myself some new clothes in really bright colors, and I’m feeling more like myself again.
Thanks to all for your caring and support!
Kristin
Hi Lainy,
Radiation worked BRILLIANTLY for me. It zapped the tumors so hard that they shrank and didn’t grow again for 19 months. I hope it works even better for your Miracle Man!
My best wishes to both of you!
Kristin
Hugs (((((((((( Carol )))))))))))
My heart goes out to you.
We are all here for you, sending wishes of peace, hope, and healing your way.
Kristin
Hello Marian, and welcome to the boards. KL is a wonderful city, I’ve actually been there twice!
I would be very interested to hear a little more about the different chemo treatments your husband has received, since I will probably be making decisions soon about that. I was diagnosed with a recurrence in 2006, and it stayed stable after radiation until now, but it has started growing again. Which treatments had the best effect? How easily did he tolerate them?
Thanks for anything you feel like sharing! And best wishes to both of you.
Kristin
Also, it takes a little time for them to make the “templates” (I don’t know what they’re really called– the lead screens that send the radiation into just the correct area) for a particular patient, so that might be why it’s taking some time. But I agree with Jeff, you should call them today before the weekend.
Radiation got me 18 wonderful treatment-free months. I hope it will help your husband too!
To answer question #2: The type of cancer it is depends on the kind of cell that went “haywire” in the first place. The tumor may be in your liver, but it was started by a bile-duct cell that developed wrong. So for instance a woman with breast cancer might also get tumors in her lungs and liver, but those tumors are still breast cancer– they’re made of breast cancer cells that went somewhere else. Does that make sense?
We all have so much to learn! Just try to do it in bite-sized pieces, so you don’t get ovewhelmed.
My best wishes to you!
Kristin
Thank you SO much for your kindness and support! After sorting through all your ideas, and talking with a doctor and nurse who are friends of mine, I’ve started the process of getting an appointment at the Mayo Clinic in Minnesota. They have several researchers there who have published interesting new work on CC, and their website says they treat 100 patients with CC per YEAR! Also, it’s a 5-hour drive from my family and friends in Wisconsin, where I grew up.
They’re supposed to call me back by the end of the week with an appointment date. I feel better already, knowing that things are in motion. Thanks for all your help.
Many blessings to you all,
Kristin
