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Date Posted: 13:06:21 10/19/12 Fri
Author: Jean (Sad)
Subject: Raven's latest Facebook posting

Here is Raven's latest Facebook posting on her latest tests. I hope this helps those without Facebook accounts.

..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. ¢¾

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Replies:

[> Re: Raven's latest Facebook posting -- Carolyn, 12:37:19 10/24/12 Wed [1]

Thank you for posting this. I am praying for Raven, that she gets the miracle she do deserves.


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[> [> Re: Raven's latest Facebook posting -- Emjay (Sad and devastated), 06:59:55 10/27/12 Sat [1]

When I read Raven's post I was stunned. What can you say? I cried and felt pain to the depth of my soul over what is happening in her life. She has been so strong and so brave. This latest bad news should not be happening. Raven, there is so much love surrounding you. We are all putting our arms around you to comfort you. My heart is breaking for you.


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[> Re: Raven's latest Facebook posting -- JB, 11:35:21 10/25/12 Thu [1]

The latest news this evening is devastating. Raven has cancelled all of her upcoming interviews. The Angiosarcoma is inoperable. She needs all of our love, prayers, and hopes for a miracle.


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[> [> Re: Raven's latest Facebook posting -- Praying for you, 20:00:29 10/27/12 Sat [1]

Raven, I'm so sorry to hear the latest news. You have been such a strong, courageous woman throughout your illness, and you truly deserve a miracle. I have been a fan of yours for a long time. You are a gifted and talented writer and have brought so much joy to us all. By sharing your personal journey you have educated us and made us more aware. I thank you for enlightening us with your grace and courage. May God bless you on this very difficult journey. My thoughts, prayers, and gratitude are with you always.


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