Marked Up and Ready To Go!

Today they took me back to the machine and did more measurements, set-up and scans. It took about 30 minutes with my head burried in the pillow, so I don't know really what they did. I do know they took the old stickers off and added more. The new stickers will need to stay on until next Friday when they hope to put on the tatoos. They also made a lovely scalloped edge marking along my whole side. Not sure what that is all about and they are pretty robotic when it comes to procedure.

That is my chief complaint at this point. While I understand that they do they countless times a week, I only do it once. For me, it is frightening, the unknown. They have never offered explaination or comfort. A simple lay down, don't move, we'll be right back is the best I have received. I thrive when given information. I don't shy away from it, even if it scares me to death. Information gives me control again. Today, I lost control. I must have shown it in my face because their demeanor changed but I had 30 minutes to suck it up and get over it. I couldn't do anything about it so I went to a "happy place :-) I appreciate that they recognized the fear but I had hoped they would be more sensitive to it before they actually saw it. Surely I can't be the only patient who has apprehension the first time they see and hear everything.

It is what it is. I am ready, I think for the real stuff to happen. I have daily appointments at 9 a.m. until the kids get out of school for summer break. After that, my appointments will be at 8 a.m. This early time will allow the kids to stay home with Scott until I get back and should only delay his appointments by 30 minutes, an hour at the most.

That's all for now. Thank you all for checking in on me today.

Still Waiting

If you can believe it...I didn't hear from the doctor regarding radiation tomorrow. What a shock! I called to inquire about the schedule so I could take care of the kids and all of the school pick-ups. I was told I was not on the books and Dr. Z was not ready yet. Huh??? What has he been doing for the past week and a half?!?! I was told to wait for him to call later today.

He didn't call but the nurse did. I will go in on Friday for more x-rays and set up. I wonder if this radiation plan will ever get started or if it is just a cruel tease.

I patiently wait, what else can I do?

Hopefully this week..

I still haven't heard exactly when I will officially start radiation. The planning for IMRT takes about a week. They estimate it will be sometime on Thursday afternoon of this week. With the holiday, I don't think I will hear until Wednesday. They told me to expect Thursday around 1 or 1:30 pm- ugh! That is when my day really starts picking up with all of the kids. I will find a way to make it work. My daily appointments will be more manageable they said. It is the simulation that will need to take place in the afternoon. I only hope I will get some time to ask the doctor some questions. Up to this point it has all been the technicians and nurses. While they are very patient with my questions, they don't offer the information. I have to drag it out of them and I don't always think of the questions on the spot. It is more than a little frustrating. I know this has to happen but I do have questions about several things, specifically do they think this is going to work???

And yes, the hospital is local (Covina). Thankfully they realized what a hardship it would be to travel to UCLA daily for treatment. Covina isn't Chino Hills but it is much better than Santa Monica!

Info on IMRT

This is what I found out about IMRT...interesting reading.
There IS hope!!

http://www.irsa.org/imrt.html

I'm a Marked Woman!!

I had my appointment to start the radiation today. I underwent a treatment planning CT scan and they marked big black X's on the perimeter of my scars. They are on stickers that will need to stay put until my next appointment. Dr. Z will use IMRT in my treatment planning which will require a few additional days of work. When I asked what IMRT was I was told Intense M (can't remember the word, magnified??) Radiation Therapy. It will mean a more concentrated focus of the radiation...whatever that means. I can only guess it means they will target the tumors. Makes sense. They estimate that I will be ready for a run through appointment on Thursday and the actual radiation to start of Friday. I'll wait to hear from them with a time. Here's to hoping they are better at communicating than Dr. Eckardt's office :-)

Let the Radiation Begin!!

I spoke to the radiation technician and Dr. Z wants to get started right away. I will go in on Wednesday for the treatment planning CT and to set the marks on my back. He also mentioned that he just finished treating another patient with a similar diagnosis and she didn't tolerate the treatment very well because of the location of the scar. It was at the waist....wonderful! Not to be outdone...I have 2 of those very long suckers...at the waist!! It had to do with the location of the scar and the waistline on her clothing. One of my scars lies just at the low waist and, you guessed it, the other lies just at the waist. The style of clothing these days has already been bothering me at the waist because of the way my scars have keloid. They feel I will be in the same boat and may need to take a week break in the middle of treatment to let the skin close and heal. Sounds yummy, huh? I guess you will be seeing me in a lot of "moo-moos" this summer. Oh and that beautiful pool we just built, won't be doing much of that either. Bummer! But, as always, I am looking on the bright side and I am very thankful no surgery is involved.

Today is the DAY!!

I had finally had enough of this waiting patiently business and called the doctor. I had to leave a message but I was very clear that I expected a call from the big guy himself....today! Tomorrow will be three weeks since I last saw or heard anything from him. No more playing it nice for me. I need to move on with my life and get this show on the road.
About an hour later, he actually called me. Well, his every so pleasant (not!) secretary called me and then proceeded to put me on hold. Dr. Eckardt explained that he presented my case before the tumor review board and they concluded that further surgery would not be beneficial at this point. They agreed that since I have not yet tried radiation, we should move forward on that path.
I spoke to my primary surgeon and he got on the phone anxious to hear what I had to report. He asked me if they agreed with the tissue samples and the final diagnosis. Hugh? It makes all the alarm bells go off in the back of my head again. They were soooo sure this was soft tissue sarcoma the first time around...what if they were right? And missed it? I can't go there but it still lingers in my head and pops up ever so often. Dr. Eckardt didn't say anything to the contrary and I didn't even think to ask that question. Dr. Newman assured me that Dr. Eckardt is the "expert" and while he thought his opinion was "interesting" he supported it because he is the "expert".
Next step: I called Dr. Z to get back on track for radiation. They will send out for a new authorization...oh joy! That ought to take another month! She said it might only be a couple of days. Let's see who is right! Oh, and of course Dr. Z wasn't there to speak with me about what I might expect with the latest developments so he will call tomorrow. I will be in Sacramento with Brendon so he may not catch me on the phone. I don't know any details regarding how many treatments or when they expect they will begin. It's almost guaranteed that they will start while the kids are on summer break which isn't ideal for me but hey! What can I do?
Dr. Eckardt wants to follow up with me every 6 months with a fresh MRI. This was good news for me because we will have documentation of any possible growth or the death of this awful experience. One can only hope! :-) So that's all for now. The next few weeks are up in the air and filled with lots of uncertainty but I know they don't include scaples and THAT makes me incredibly happy.
It's a good day!

STILL Waiting

I finally became impatient enough to put a call into the doctor. I was told that he didn't go to review board last week and that he just presented my case on Thursday. UGH! Why is nothing ever easy?! I am sure he had good reason for not presenting cases last week but communication is a beautiful thing, isn't it? So, the earliest I should expect to hear from him regarding their decision was Friday, which didn't happen. The latest I should expect a call is Monday. I should pretty much be on pins and needles all day. Wish me luck!

Still Reviewing

The tumor review board met yesterday to review my case. I am told it could take the doctor up to a week to call me with their recommendation. So, I sit and wait.