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Date Posted: 01:24:36 10/18/12 Thu
Author: Ravenbeauty
Subject: Another update..................................................
In reply to: Ravenbeauty 's message, "Update on me (10/8/12)!" on 16:59:30 10/08/12 Mon

The news from yesterday has been very hard to process for me. Our long drive home yesterday from this very large and imposing medical center was quiet and painful. Neither John nor I had the words. Every time we would try to discuss what just happened, we had to stop talking so that he could see the road in front of him (I sometimes forget how hard this has been on him). I don't have any cute anecdotes or any great way of telling you this. I want to come out here and just give you amazing news like I had been for a better part of the past year. I had clear margins from the surgery in July. We celebrated. I was feeling so much energy from all the regimens I've been on that I wasn't fully prepared for all of this NOW.

After I completed the chest MRI (felt like I was burning up in there), we met with the new surgeon, who has in fact dealt with Sarcoma as rare as it is. All I could do was cry and probably because at this point I am truly exhausted. He said that my case is not like anything they have ever seen (getting really tired of hearing this). I have asked myself a million times why this has to be me, but it's pointless and goes nowhere. My mom died of chemo induced Leukemia and now I am battling radiation induced Angiosarcoma. I am my mother's daughter. Lots of questions about our genes and talk about my first go around with Breast cancer in 2001. He said that the surgery needed would be so incredibly extensive and intense that the only way they would consider operating on me is if I underwent a procedure first in which they could biopsy the suspicious Lymph Nodes around my windpipe and lungs first. If they find cancer in those Lymph nodes, he said there would be no point in putting me through such a grueling procedure, which would require a great deal of reconstruction (you were right Maria). Time stood still for me in that office yesterday. Nobody mentioned Lymph Nodes on my windpipe or that close to my lungs. He said that they are suspicious looking, and if they are cancerous, they would not operate.

The next 10 minutes were spent discussing what this procedure entails, and I refused the option of making an incision in my throat area under general. I think we are going to go for option number two because if we don't they won't do the surgery. Option number two is them putting me under Twilight and sticking a scope down my nose with a needle inside and I am guessing a small camera, and taking samples of the suspicious Lymph Nodes on my Windpipe and lung area. The biopsy is what seals my fate on this. I asked him why they would not operate anyway knowing that this mass on my left chest wall and this large growth under my arm must come out, and he said that they felt it would not be in my best interest to do things halfway and not address the Angiosarcoma as a whole. He further stated that they truly believes that it's the Angiosarcoma that is in those nodes on my Windpipe and around my lungs as Angiosarcoma is known for going right to the lungs. He said the growth under my right arm is a large soft tissue mass (as further identified by the chest MRI yesterday) and that it's incredibly characteristic of Angiosarcoma. I'm glad that John was with me because I shut down halfway through this and would have lost the rest of what he said. The one thing that he said that surprised both John and I very much is that chemo would be ineffective in my case. They would not suggest it due to the experience they have seen with other Sarcoma patients (one less argument I had to have).

He said if we were to get a miracle and find that these particular Lymph Nodes are not cancerous, and they do proceed, I would need extensive surgery requiring a special type of plastic surgeon involved who would have to move my back muscles around (right again Maria, and I told them about your case asking if they intend to remove the chest wall). It sounded like a nightmare hearing him explain what would need to be done. Either way this things goes, it's a living nightmare. Only others like me are going to understand what I am about to say, but what had me even more sick to my stomach is that I am at an exit point (near my Birthday). You know what this means. I can't pretend that there is a great deal of hope anymore. I would be lying to you, and I won't do that. I'm not a game show host. Life is not always positive, and to be afraid of being human and feeling what comes natural at a time like this, would be unimaginable for me. I've been painfully honest with you about these incredibly private things because you have meant so much to me over the years. As you know, my initial reaction was to keep all of this private when I was diagnosed late last year. I then stopped to think about how you might feel one day with someone linking you to an obituary without my ever telling you that there was even a problem. I also thought maybe by sharing what is happening to me, it could possibly help someone else out there one day. I'm not packing it in, but I would be out and out lying to you if I said that I wasn't feeling hopeless at this point. I would be lying (can't do that). I've always worn my heart out on my sleeve. It's just how I am. The one thing about me is that I don't pretend to have all the answers in life. I don't study people's behavior looking for flaws. I look for the humanity in them and that's enough for me.

In that vein, yesterday as we grew nearer and nearer to home (this is almost a 6 hour drive in total for us), I had a knee jerk moment where I thought I would just cancel all the shows that I have remaining. How do I laugh and pretend that everything is fine when nothing could be further from the truth. John and Flo made me realize that if I gave up on my shows, I would be giving up the one thing that has distracted me from this darkness. I would be giving up my chance to talk to Andrea Evans, who has meant the world to me since I was a child. I would be giving up my chance to talk to Linda Evans, Jaclyn Smith and my dear, brilliant, friend Mark Pavia who is going to do even greater things out there with his new Stephen King film. John had to remind me over and over again that I am no quitter. That I can't start now. He's right. I'm not perfect. I'm just a person so I don't know how the next few months are going to go for me emotionally, but I am going to try as hard as I can to make you proud of me. I love you (and I never say things I don't truly mean). Tomorrow is my show with Andrea, and come hell or high water, this thing is going on a shelf somewhere far away so that I can lose myself in this chat that I have looked forward to for a very long time. You know that I will keep you posted (I made that promise to you) and I will. ♥

https://www.facebook.com/ravenbeauty.soapdiva/posts/374191972658731

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Replies:

[> [> Re: Another update.................................................. -- rapido, 05:56:24 10/18/12 Thu [1]

Raven, I am so sorry, there are no words to console you. You are incredibly brave. You have legions praying for you. Take it one day at a time.


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[> [> Re: Another update.................................................. -- emjay, 06:59:46 10/18/12 Thu [1]

Raven, I am heartbroken over the news you just posted.You have been so brave and will continue to be--that is so very much you. There is so much love and caring surrounding you from all of us. You are so very special. I will continue to pray for you


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[> [> Re: Another update.................................................. -- Monika, 11:30:42 10/19/12 Fri [1]

Oh Raven. I can't pull together my thoughts to say "the right thing". Just know that you are in my heart and prayers. Thank you for letting us know.


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[> [> [> Re: Another update.................................................. -- Hannah ((((love you)))), 15:00:06 10/21/12 Sun [1]

(((Ravenbeauty, I send you lots of love every single day)))

I enjoyed all of your soap posts (and, now, your radio shows) all these years...and you lifted me through many dark times in my life. I didn't know you personally, but you are always gonna own a piece of my heart.


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[> [> Re: Another update.................................................. -- Anonymous, 13:26:54 10/22/12 Mon [1]

Dear Raven,
I can honestly say that I have had sciatica and so has my family and we went to a chiropractor. I had it so bad that I could not lay down to go to sleep or walk. I know how you feel it is very painful. Stress makes it worse. If it wasn't for him I would not be walking today. A chiropractic doctor gives you adjustments and takes away the pain. If you chose to go to one you must pick one that is reputable. A lot of Medical Doctors do not believe in chiropractors, but believe me I would not trade my doctor who helped me for the world. Hope you feel better. XOXO


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