My new road: radiation?
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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….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.
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!!!!!Kris….you must know that a tidal wave of support is heading your way.
In re: to Stereotactic radiation (also called pinpoint radiation)
A special scan pinpoints exactly where the tumor target is located. Some machines have the ability to adjust for patient motion including, breathing whereas other machines require a special holder. The purpose is to give high amounts of radiation in a short period of time (one to five days) and spare the surrounding tissue and organs.Numerous companies market these special machines: Primatom, Synergy, CyberKnife, Gamma Knife, Novalis, Axesse, TomoTherapy, Triology, X-Knife, or Trilogy.
Tons of hugs and best wishes,
MarionBeats the heck out of me what they are going to do. But sending a ton of prayers your way that all goes very well! Will be thinking about you too.
Tomorrow is the big day. 3-4 hour apt. with radiologist. I guess I get to learn what stereotactic radiation is all about. I don’t know what tomorrow is going to hold: I have no idea what they are going to do for 3-4 hours… another scan? My tats?? My mold?? I guess I will find out. No sense speculating: I have NO idea… so if you are reading this before 10:30 (or even later) on Tues. Eastern Time, send up a prayer, positive thought or whatever positive vibes you believe in…
Thanks a bunch.OMG, Kris. Wherever and whatever has transpired with my own Cancer the Doctors offices have always done the leg work. When I just switched to MDA out here they called every Imaging place and every doctor I had used and my Hospital to get ALL my records. This is not acceptable! I sure agree with Susie! I feel so bad for you as if you don’t have enough on your mind!
Oh, Kris, I could just scream. I don’t understand why patients, who are going through enough already, need to be their own coordinators.
I hope you get in soon.
Take care,
Susie
Dr. K called me on Friday personally (OH, BOY!!) to tell me she’s concerned about how long it’s taking to get into Fox Chase. I responded by telling her that if I had known I had to do all the legwork I wouldn’t have waited 2 weeks while I thought her office was doing the work…. then I would have gotten in earlier. And if she wants me in faster, I suggested she call the dr. and tell him that. Well, it’s been 3 working days and nothing. So I guess she isn’t THAT concerned!
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