kris00j
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Cindy: I’m glad the radiation is starting quickly. You KNOW you are in my prayers!!! Please keep us posted on how things go.
Lainy: I have to tell you the dance instructor taught “I Need a Man” on Thursday. Of course I had a blast with that one!!!!! But the song goes something like “Not a Boy, I need a Man, need a Man!” Needless to say everyone who knows me was laughing and pointing that this is my new song!
Who knows? Maybe I’ll meet not only some great staff at FCCC but maybe I’ll also meet a “MAN”!!!!
Audrey:
After my letdown last week, I have decided it’s up to me to change my diet. I have cut out chocolate (heaven forbid!) and almost all sugars because Dr. Fong said it feeds the lymph nodes. Dr. Kemeny said she doesn’t believe in all that “hogwash” but if it’s going to keep me alive until radiation and hopefully surgery, I’m changing! I still allow myself a tablespoon of ice cream instead of the bowl, but I have found fruits to be very satisfying. I make a smoothie with fresh strawberries, bananas, organic milk (just a tad) and ice. YUMMY and really sweet. I am not sure how bad too much fruit sugars are for you but they HAVE to be better than the granulated stuff. And the “high fructose corn syrup”. It’s all gone from my house. My next door neighbor loves me! She got a huge armful of frozen food…
And as far as positive thinking, if I think positive that this diet will help, it will!! Right???
I hope things are going well. Sorry I haven’t gotten back to you but yesterday, today and tomorrow are nuts. I am in Princeton Wed. and will try to figure out when and for how long….
KrisSusie:
I am so happy to hear your good news. I thought 3 month scans for 2 years was the norm. THEN depending on your particular conditions and doctors, you MIGHT get to go to 6 month scans.
Go with what you want and how you feel about it. But personally, I would rather tempt fate with more CT scans than tempt fate without them. Then again, I know IF I get the surgery, I’ll never have clean margins so I KNOW I’ll be one of the glowing people for years to come.
Hugs and happy birthday!!Pam, don’t you dare tell anyone but I could be Tiffany’s mother too. I actually told her “momma Kris” says to her one night. And I don’t HAVE children!!!
How about “Auntie Pam”???
Better yet, you could be my sister I never had. I have a few sis’s in law, and love them dearly, too. But I always wanted a sister. I’m past the sharing clothes and giggling in the night, tho. Oh, wait, I’m not past the giggling in the night yet…GO DERIN!!! GO DERIN!!!! (picture the pom poms flying!!)
And you still haven’t shown up to wash my car!!!
I’m 48 going on 32. Does that count??? Tiff, you KNOW I speak the truth here!!!! My here was Peter Pan (not really). But I never want to grow up. I still like watching the fireworks from the ferris wheel at the fair! Best seats in the house!
Grover:
I will admit I did check out your blog a about a mont ago to make sure you were still alive and kicking. Read that you had been getting kicked, not doing the kicking.
I’m so glad you’re feeling better every day! It’s another hope for the rest of us.
BTW, try cut and paste. That’s what I do!!
Cheating, I know, but don’t tell anyone else my secret!!!! Of course, I still have to edit from my blog to here and vice versa, but it’s easier than typing it ALL out twice.Enjoy your summer. You’ve earned it. And don’t go climbing any ladders! I need to: I have trees growing out of my gutters!!
Hugs to you
I love my surgeon but since I can get my foot into the door at Fox Chase why not ask?? It’s 15 min. from my home as opposed to 3 hrs. I know, I know, I don’t have to fly. But still. It’s all about the options. We don’t have many, so I’ll research the ones I do have!
So here’s the latest news: Dr. K. acted like the radiation she wants me to get is new. She said 2-3x a week, which is much more doable.
She wants me to have either conformal or stereotactic radiation. Not new, according to Fox Chase Cancer Center. They’ve been doing both since around 1999. And they do have a bile duct dept. (for lack of the word I really am looking for).
Dr. K. says I can go to Fox Chase. YAY!!!! Now all I need to do is get Dr. K’s office to fax FCCC the necessary paperwork and stuff. I have my last 2 CT scans on disk. And all the original stuff. I don’t have the April-Feb. stuff. I hope they don’t need that. I do have all the paperwork that comes with it…. hopefully that’s enough.
I guess I’ll find out next week.
So nice to see you again. I also was just wondering how you were doing. I’m glad you are almost done. And that you didn’t have many side effects. I never had “normal” side effects from Xeloda. I got the dizziness/vertigo/blurry vision that affects less than 2% of the patients. Of course!!
I can’t wait to hear how your trip to NYC went. Maybe I’ll be there at the same time and we can do lunch across from the offices!!Audrey: I have an appt. scheduled with Dr. Lee (Richard) that is an onc in Princeton at the Medical Group. I don’t know if I’m keeping it or not. It depends on Dr. Kemeny. I have to have an onc. who’s staff knows how to access the port. And Dr. Lee’s office does, but only for the 2 week heparin/saline solution.
Derin: nice to see you again!
And to all: Dr. Kemeny called me last night. I’m waiting to hear from her again today… it seems she wants a “special” radiation that might not be offered at Fox Chase. I’m sure it is, but I still have the issue of the pump to deal with. So I wait….. I was also going to do a little scouting if I went to Fox Chase. I was going to discuss my diagnosis with an onc and/or surgeon and see if they agree with Dr.’s Kemeny and Fong. I love Dr. Fong, but if I can get treatment that I agree with 15 min. from home, I might consider it….. don’t know yet.Melissa:
There is a website called lotsahelpinghands. I don’t know if it’s .com or .org. I can’t remember. But you can send it to all your email contacts and they can sign up. You can ask for anything and ask for help. And they can go online and sign up for the days.
Just ask them to put what they are making. I think that works.There’s another one called takethemameal.com. But I can’t remember how that worked. I think that might be more what you are looking for?? I think this one was REALLY easy.
I hope this helps and I’m sorry you are in a position where you need it. Good luck.
And Tiffany, All you had to do was ask!!
Hugs!
It’s the communications between facilities that concerns me. Whenever I go to Abington, even for something as simple as a blood draw, it takes hours of phone calls to make sure it gets to my doctor at Sloan. It’s such a hassle.
I talked to my surgeon about possibly going to Fox Chase and he said he didn’t have a problem with it. BUT that doesn’t mean either my insurance will allow it OR that they will communicate with each other. Fox Chase makes so much more sense to me. BUT it isn’t in the Sloan Kettering network.
I think I have lots of phone calls to make this week. And lots more thinking to do.
Thanks for the input. I know fatigue is a big side effect, and that concerns me, also, since I live alone. I would like to be near my friends who can help me out if I need anything. And they are definitely not in Manhattan!!Interesting article. Thank you for posting.
Marion: I agree with you. I think this is, unfortunately, a cancer who’s occurrence is becoming much too common. I believe 3,000 was probably a good number for last year.
And Randi: Good one! I haven’t eaten deli sandwiches except for BLT’s, in years!! But maybe some deli should give Ruben a cousin??
