Re: My new road: radiation?

I'm still mad at Dr. K. She never called the radiologist even after calling me to say how "concerned" she was about the time frame. He had to call her today... I want to fire her, but I've got her stupid pump in me!!
The appt. was about 2.25 hours. Nothing really got done except he told me what WILL happen. Thurs. I go for a CT scan, MRI and tatting and mapping. They will do a simulation of the radiation. Then 5 visits. Probably starting the 16th. Every other day... then 6 weeks later Dr. K wants a CT scan and to see me.
I called her office when I got home and calmed down enough to not yell at Megan. She answers the phones and sends Dr. K. emails. I told Megan to please put in the email that "I was CONCERNED and upset that Dr. K had not called Dr. Meyer to discuss my case, since she was so CONCERNED 1.5 weeks ago".
I also called Dr. Fong's office and asked that he get in touch with Dr. Meyer (the radiologist) to make sure everyone agrees on the best scenario for me. Dr. K wants him to attack the tumor too, but I thought Dr. F said that was too dangerous... Dr. M said it isn't. I just want to get started so I can finish!!!
It's so aggravating..... If I didn't have her stupid pump in me, I would fire Dr. K!!! I know, stress isn't good for me...
I also talked to Dr. M about my diet. He said cutting out the processed sugars was a good thing as long as I don't start losing too much weight. I said I've gained 5 lbs.!!! Go figure: I'm the only person I know who starts eating fruit- and vegetarian and GAINS weight!!!!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Kris, I am so sorry for all the aggravation and yes, you certainly don't need the stress! I am unfamiliar with pumps as Teddy never had Chemo but can you tell me why if the Pump is already implanted another ONC can not take it over? Thanks.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

Dr. K invented (or more specifically, improved it) and she doesn't give up control over it. She will allow ONCs and their nurses to be trained in how to administer saline and steroids, but will not allow anyone else to use chemo or glycerol in it. That's her dept.'s job. Saline means 2 week regimens. Glycerol is long'term so I wouldn't have to go for about 6 or so weeks. I want to get up there starting all this radiation so I can quit worrying about the pump... but it's hard to make a quick appt. with her.
I've been to Princeton the last couple of times, and will go again in a week. But I have to keep going every 2 weeks when I go there. And with no treatment, I think it's a waste....

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Wow, Kris, thanks for the Pump 101. Guess I just assumed that when someone invents/improves something that will aid mankind, they would want everyone to be able to use it.  I am so naieve even at my age! Any plans today? My daughter is coming over and we are doing Salmon on the Grill. She is not in to beef/pork and the kids are gone so we can chillax by my apartment pool. We are expecting our first storm though since March! Everyone is more excited about that then the 4th!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

Actually the pump is not new. Fox Chase quit using pumps a few years ago.
I went in this morning expecting a CT scan, MRI, mapping, tattoing, and a simulation. Dr. Meyer said about 3+-4 hours....
I was in for my CT scan by 9, NO MRI (he didn't need it), mapping, tattoing and simulation. I was out of there by 10. Something that actually worked!! WOO-HOO!!! And the tattoos are smaller than my freckles. Just little tiny dots. Felt like tiny pinpricks.
They told me my breathing was really shallow. I said that was because I was on drugs for the MRI. And I always breathe shallowly when I lay on my back... I think that's why they didn't need the MRI. Because the nodes didn't move much since my abdomen doesn't move much when I'm relaxed....
Just gotta remember to take Xanax before every treatment!! smile
And Lainy: I had a good day yesterday. Went out with a friend to one of her friend's houses. It was a fun veggie picnic. I had my first veggie burger. Not impressed. But I don't like hamburgers either, so... Hung out by the pool and chatted.
I hope you got some rain!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Glad you had a good 4th, Kris. I am not into Veggie burgers either but I LOVE burgers. We do have something else in common beside CC! I too have freckles! I used to tell the Grandkids that I swallowed a dollar bill and broke out in pennies!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

I start radiation at 2pm this afternoon. Stereotactic 3d imaging. Dr. Fong and Dr. Meyer (radiologist) talked last week after I got my tats, etc. I guess I find out today what they discussed. I still don't know if I am getting radiation to both tumor and lymph node(s) or just lymph node(s). I guess it doesn't really matter, either.... side effects will most likely be the same. Dr. Meyer said he had no concerns about the tumor. It's the lymph nodes between all those organs that are much more dangerous... intestine, duodenum, pancreas, and the "good" bile ducts.... I sure hope they have a steady hand!!!
Needless to say, I'm quite nervous about today... I think it's gonna be an extra Xanax day.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Kris....know that you have a tidal wave of support rushing your way.  I will be thinking of you and can't  wait to hear that everything turned out great.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My new road: radiation?

Scratch that last post. I'm leaving it up anyway... Fox Chase just called and they want more time to evaluate my situation. They've had a week!!! So they cancelled my radiation! I can't believe it. I'm so upset about ANOTHER delay in my treatment. I've lost count... chemos delayed, surgery delayed, etc., etc.
I want to get to the top of one of these damned ladders and stay there for a while. I'm tired of the chutes getting in the way. I can't use the rollercoaster theme because at least there you can see the uphill in front of you.

The doctor will be calling me this afternoon. I hope he has a good reason. I might start tomorrow: I might not. I LOVE these guessing games. I GUESS he will tell me today. UGH!! is not strong enough but I already swore once on here...

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Oh Kris....I am with you - this is soooooo upsetting. What on earth swayed his opinion on the day of the proposed treatment? 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My new road: radiation?

Aw, Kris. Anxiously awaiting some better news here in Phoenix! If wishes would come true I am wishing for them to get on with the show!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

Radiation is back on. I just wish they had spent the 5 minutes explaining to me why this morning! Apparently someone looked at some of the physics calculations and was not happy with them. So they redid them today and are now happy with the calculations. Why couldn't the guy have said that this morning?? Radiation is scheduled for 3pm tomorrow now. Just 1 day delay.
I told the doctor I would have really appreciated knowing this in the morning instead of worrying about what the problem was all day long. I told him how I had a horrible day stressing about what the problem could possibly be and IF I was going to get radiation. He apologized, but it wasn't my doctor that called. It was an associate.... at least I got to say something to someone.
And he also said "your tumor". I corrected him and asked that he not say that to cancer patients. It is NOT my tumor. I don't want it. He laughed and said he understood since he is also going thru treatment..... at least he understood. Hopefully he remembers.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Why the nerve of these "calculating" people! But, all's well that ends well. I am elated and sending much good luck to you, Bionic woman! I knew you had a personality that radiated! Hey, now you can be your own night light!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

Lainy:
I think with all the CT scans, MRI, etc.... I've been my own night light for a while!!!! This will just make me "brighter"!! HAH!!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Good luck today Kris.  Prayers of healing and grace coming your way as you start down this new trail.

Wishing all God's blessings!

Re: My new road: radiation?

Sending tons of positive thoughts for your radiation zapping today! It was quite the ride to get here! Sometimes doctors get too wrapped up with the disease and forget about the person. Good job educated them Kris! Hugs. Nancy

Loving my husband from afar.

Re: My new road: radiation?

Thanks everyone. I was scheduled for 3pm. At a little before 2 they called and said to come at 4pm. Of course, I had already taken my Xanax... Got there at 4pm. At 5pm they finally took me back. I informed them my Xanax was now 3 hours into my system and I sure hoped it was still gonna work... After an hour I was done. Testing, scanning, testing, checking and then finally radiation.
I feel pretty good except that I was getting a headache from the folded up sheet under my head... an hour of not moving. Hard to do for a fidgit like me.
Thanks for everyone's support. It was a tough couple of days. I'm emotionally exhausted. Thankfully I feel fine.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Kris,

I am glad it finally happened for you. Now I hope that radiation gets in there and takes care of business!! take care and try to relax.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: My new road: radiation?

Hi Kris,

So glad to hear that you mananged to get the radiation done and my fingers, toes and everything else are crossed for the best possible results! I'd be like you I guess with the fidgetting and not being able to do that! No wonder you are exhausted, so get some rest, recharge and look forward to getting back on the scooter!

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My new road: radiation?

2 or 5 treatments down. A little back of the mind/throat nausea going on, but it's not too bad. I will be bringing my anti-nausea meds tonight just in case. And sitting by the outside door...
Did almost nothing yesterday after hearing about Kim. It really sent me into a spiral. So I gotta get up and dust myself off.
I do have to say they have the most uncomfortable molds made. I though it was made for my back, but there's something sticking into one area of my back. It's quite painful after about 45 minutes. And the head rest isn't too comfortable, either. Both days I left with a raging headache from something poking the back of my head.
But it beats the alternative, right??
I just ask God every night to have this work....

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Hang in there, Kris, only 3 left!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My new road: radiation?

Kris.....make sure to mention the throat discomfort in fact, mention everything you are experiencing.  If it bothers you - mention it. 
Hang in there, dear Kris and imagine those tumors being zapped. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My new road: radiation?

Marion: It isn't throat discomfort. It's that feeling you want to be sick in the back of your throat, but not enough to actually vomit.
I would definitely tell them if I thought it was something wrong. I brought my anti nausea meds with me tonight but didn't take them.
I've been having an occasional sharp pain where I know the tumor is, so today I envisioned the troll munching away so fast he couldn't keep up. I figured if I was having pain, that means scar tissue, right???? So he was busy eating this afternoon. And he was shoveling the tumor down his throat!!! Now I gotta get hom to work on the lymph nodes.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: My new road: radiation?

Kris,

I had bad throat pain, like a lump in my throat when swallowing during radiation.  I had bad reflux and probably some esophagitis.  Maybe ask about going on a proton pump inhibitor.  Keep us posted.  Oh, how I hated radiation towards the end.  But remember, if you do have side effects, they will get better after treatment ends. 

I am home along tonight and watched 50/50.  Not my smartest decision. wink

Take care!

Susie

Re: My new road: radiation?

Susie.....thanks, I was hoping for you to chime in. 
Dumb question:  What is 50/50? 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER