Well, the news wasn't great....the tumors have gotten bigger. I asked if it is reasonable to believe that the growth could be the result of the lapse in time between March 9th (the MRI) and June 1 (the first radiation treatment). He said yes but he didn't want to commit to anything further or continue to theorize about the activity. I respect that. I wouldn't want him to guess and try to figure it out from there. Dr. Newman believes that Dr. Eckardt at UCLA is my best hope for figuring this out. I respect that opinion as well. I also expected all that happened today. There were no surprises. I am disappointed but I also expected to walk away with those feelings.
So my next step is getting through the Teflon at Dr. Eckardt's office. Mary at Dr. Newman's office took care of the sordid details and rude receptionists and successfully made an appointment for me on Oct. 7th at UCLA. That day ought to be a doozy :-) My appointment is at 1:45pm in Santa Monica. With all of the kids pick ups and practices in between. I was grateful to get in so soon so I didn't want to complain about the time regardless of how difficult it will be. Oh well! Difficult is my middle name...or so it seems!
I really could have used some good news today, but I didn't get it. I am getting kind of used to the idea that some things just aren't going to go my way but I always build myself up to believe I will catch a break. Not this time.
Thursday, September 24, 2009
Tuesday, September 22, 2009
MRI Complete
My MRI was done today. The technician repeatedly commented on how "beautiful" my pictures were coming out... So being the kind of person that I am, I looked for the underlying message she was trying to deliver. What does beautiful mean to an MRI tech? Does she mean that the tumors are crystal clear or not there anymore?????? Wishful thinking on my part???? I really don't know. She was really trying to be encouraging but that could just have been her part in trying to keep me from breathing while she was scanning (I was holding my breath throughout parts of the scan.)
I was able to get her to expedite my results and the ensuing report to facilitate my appointment on Thursday with Dr. Newman, my surgeon. So Scott and I will head to see our favorite doc, Dr. Newman. While we don't feel anyone really wants to do another surgery right now, he is willing to see us and sort through all of our options. It's not really within the realm of my treatment plan right now but we are so very grateful that he has taken such a liking to us and he willing to help in any way that he can. I have to say, just that act, has given me such comfort.
These past few days have been difficult, I'm not going to lie. I am sure darker days are ahead but I have faith. I have to...my kids need me to be strong. It has been difficult.
Thursday will hopefully be a very productive day. Scott will be with me to pick me up if need be. I'll keep you posted.
Oh and the radiation seems to have killed my ovary :( I will have another doctors appointment to look into that first week in October. I will spare the male visitors the details but no I'm not pregnant...just suffering the effects of radiation therapy.
I was able to get her to expedite my results and the ensuing report to facilitate my appointment on Thursday with Dr. Newman, my surgeon. So Scott and I will head to see our favorite doc, Dr. Newman. While we don't feel anyone really wants to do another surgery right now, he is willing to see us and sort through all of our options. It's not really within the realm of my treatment plan right now but we are so very grateful that he has taken such a liking to us and he willing to help in any way that he can. I have to say, just that act, has given me such comfort.
These past few days have been difficult, I'm not going to lie. I am sure darker days are ahead but I have faith. I have to...my kids need me to be strong. It has been difficult.
Thursday will hopefully be a very productive day. Scott will be with me to pick me up if need be. I'll keep you posted.
Oh and the radiation seems to have killed my ovary :( I will have another doctors appointment to look into that first week in October. I will spare the male visitors the details but no I'm not pregnant...just suffering the effects of radiation therapy.
Saturday, September 19, 2009
Tuesday, September 15, 2009
Still NO Word
Well as you might have imagined, I still have heard nothing from the radiation oncologist or his staff. I went in to have the blood work done yesterday that is needed for the scan. I called this afternoon to inquire about the scan, specifically why it is taking so long. Most times I have the authorization and referral in hand before leaving the office. I left the office last Thursday and they still don't have a clue why I don't have it. I have a suspicion....they are MORONS! :-)
Thursday, September 10, 2009
Another Yahoo in the house!!! UGH!!
Scott and I went to the hospital this morning for a visit with Dr. Z, the radiation oncologist. To my surprise (and I should learn by now) he didn't appear at the door. Another "fill-in" doctor came in to try and conquer the great mystery that lives in my body. After getting all of the facts straight and in her defense there are quite a bit to wrap your head around, she bluntly declared that radiation clearly didn't work! I have the bump on my back that sits slightly above the first two scars that has been there since February but without having first done a scan I didn't expect anyone to declare defeat just yet.
Not only did she decide that it was unsuccessful she also raised the white flag and surrendered. Yup, you read that right, she doesn't see what else can be done for me. Live with it! She doesn't know why this is happening and she doesn't know how to stop it. "Have you been on the Internet?", she asked. Scott spoke up and let her know that he banned me from the Internet where my back is concerned. There is only bad news out there and it really got me in a funk over the summer. She wanted to know what my research yielded. Kinda strange...I don't remember ever being in medical school. I mean I can offer the lay person perspective but did she really want to rely on that????
She offered to drug me up to help me with the pain. When I refused she offered jalapeno cream. Yup, re-read that one, too! Jalapeno cream? Never heard of it and somehow I think I will have to pass on trying to even find such an animal. To a large extend, my visit was a waste. Nothing she said did I allow to penetrate my brain. I don't accept that I can't be helped. I don't accept that I am to live my life in pain all the while allowing aggressive tumors to grow in my body. I asked her at what point would she suggest that we address what is sure to become a huge swelling in my back. How big and how much pain would I have to be in to be worth saving????
When she asked what we would like to do...duh if I had a clue I would have treated myself long ago, I told her I would at least like to get a look at it from a scientific perspective. Ah...MRI....CT Scan anyone? She then asked ME what one was better!! It was so off the wall, it was surreal. Scott said, uh maybe an MRI? Dr. Scotty, as I now call him, is calling the shots! Scary!!
I will have to do blood work before they can do the scan so that puts it all a few days away. I only pray the insurance doesn't hold matters up but they shouldn't be a problem. After I thought about being abandoned by the doctor I decided to call my trusty surgeon and his sidekick Mary. Since the radiation oncologist basically said you are on your own lady and much luck to ya, I didn't know where to turn. What should my next step be since they didn't know what else to do with me? This is a horrible feeling!!
Luckily for me Mary is a sweetheart and she offered to make an appointment with Dr. Newman once the scan is ordered. He would sit down with us, look at the scan reports and together we would decide what my best options are for the next step. Mind you, I don't have a NEED for a surgeon, nor do I have an authorization to see him. It is with the care that he gives his patients to help them that he is doing this for me.....because he cares about his patients and wants to give them the best possible care regardless of the circumstances they are faced with. And in my case, the circumstances happen to be that he isn't the doctor who can fix it nor is he getting paid to help me but he is helping me to see that I don't lost in the shuffle. I can't say enough about these two human beings! They have picked me up EVERY time these buffoons have dropped me and while I feel so incredibly discouraged, I also feel incredibly blessed that they are here to help me navigate my way through managed care hell!
So I will keep you posted. It's been a rough day but I've been through them before and I will get through this, too. But I am tired of the uphill battle. I need a reprieve....
Not only did she decide that it was unsuccessful she also raised the white flag and surrendered. Yup, you read that right, she doesn't see what else can be done for me. Live with it! She doesn't know why this is happening and she doesn't know how to stop it. "Have you been on the Internet?", she asked. Scott spoke up and let her know that he banned me from the Internet where my back is concerned. There is only bad news out there and it really got me in a funk over the summer. She wanted to know what my research yielded. Kinda strange...I don't remember ever being in medical school. I mean I can offer the lay person perspective but did she really want to rely on that????
She offered to drug me up to help me with the pain. When I refused she offered jalapeno cream. Yup, re-read that one, too! Jalapeno cream? Never heard of it and somehow I think I will have to pass on trying to even find such an animal. To a large extend, my visit was a waste. Nothing she said did I allow to penetrate my brain. I don't accept that I can't be helped. I don't accept that I am to live my life in pain all the while allowing aggressive tumors to grow in my body. I asked her at what point would she suggest that we address what is sure to become a huge swelling in my back. How big and how much pain would I have to be in to be worth saving????
When she asked what we would like to do...duh if I had a clue I would have treated myself long ago, I told her I would at least like to get a look at it from a scientific perspective. Ah...MRI....CT Scan anyone? She then asked ME what one was better!! It was so off the wall, it was surreal. Scott said, uh maybe an MRI? Dr. Scotty, as I now call him, is calling the shots! Scary!!
I will have to do blood work before they can do the scan so that puts it all a few days away. I only pray the insurance doesn't hold matters up but they shouldn't be a problem. After I thought about being abandoned by the doctor I decided to call my trusty surgeon and his sidekick Mary. Since the radiation oncologist basically said you are on your own lady and much luck to ya, I didn't know where to turn. What should my next step be since they didn't know what else to do with me? This is a horrible feeling!!
Luckily for me Mary is a sweetheart and she offered to make an appointment with Dr. Newman once the scan is ordered. He would sit down with us, look at the scan reports and together we would decide what my best options are for the next step. Mind you, I don't have a NEED for a surgeon, nor do I have an authorization to see him. It is with the care that he gives his patients to help them that he is doing this for me.....because he cares about his patients and wants to give them the best possible care regardless of the circumstances they are faced with. And in my case, the circumstances happen to be that he isn't the doctor who can fix it nor is he getting paid to help me but he is helping me to see that I don't lost in the shuffle. I can't say enough about these two human beings! They have picked me up EVERY time these buffoons have dropped me and while I feel so incredibly discouraged, I also feel incredibly blessed that they are here to help me navigate my way through managed care hell!
So I will keep you posted. It's been a rough day but I've been through them before and I will get through this, too. But I am tired of the uphill battle. I need a reprieve....
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