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Date Posted: 00:24:26 12/18/13 Wed
Author: GoodWillTalking
Subject: Raven Update 12/17/13

Hey Guys,

John and I had a pretty deep conversation about matters close to my heart and it really helped to clarify some things for me. I know that I have told you this before, but so many times people will just say something that sounds good, but not truly mean it (I never say what I don't mean). Bad, good, or indifferent, what you see is what you get (that's not the way for all people). They may seem happy and use all the right language every day, but that's not how they truly feel all the time (unless they are a game show host). They may post lots of pretty pictures about love, light, the planet, and love for all mankind, but it's not who they really are deep down inside (it's a cleverly orchestrated show). If I am hurt, you know it. If I am scared, you know it. If I am heartbroken, you know it. If I am angry, you know it. If I get a good moment now and then when the pain isn't taking away every moment of joy, you know it.

Some have left heavily saturated, Sachharin filled notes for me on my wall only to find out later that had I smelled them a little more closely, I would have smelled the poison, and that what they said couldn't be further from the truth (those are the people who will break your heart). They are only there for you when you sound like you are on happy pills with nothing but good news to share. When things are bad, they are silent or simply gone. They don't want to know because it's not positive (how can it be if they are not walking in your shoes). As John said to me last night, most of them would have lost their minds by now with what you've been thrown, let alone spouting perfect language and feeling nothing but positive energy! Let them get a whiff of what you are dealing with and let's see how positive they feel (one of the reasons I love him so much). That monstrous note that I received from that anonymous (not so anonymous now) monster a few weeks back coupled with a few things that have happened lately (one being extreme heartbreak from someone that I believed truly cared) made me feel funny about sharing anymore. I certainly don't want to be a "Camille" and ruin anyone's day with things that I am actually living through (God forbid that it may ruin their day just hearing about what I am actually living through).

When I began sharing this by letting you know that I was diagnosed with Epithelioid Angiosarcoma, I felt that it could help someone else some day. That it would be cathartic for me, and also help others by bringing awareness to this insidious, dangerous, cancer that most never survive past 18 months (a cancer brought on by my doing radiation for my first bout with breast cancer, Infiltrating Ductal Carcinoma Stage II, Grade 3, Poorly Differentiated, Triple Negative, treatment ending in 2001). At first I was very uncertain about letting anyone know other than family and very close friends only. What if it made me appear weak. What if people didn't want to hear about what I am going through. Something told me that I wasn't giving you enough credit. That something was right, as 98% of you have not only wanted to know and been there when it's been the darkest for me, but if you don't get a status update from me, you get anywhere from slightly irritated to worried. You make me feel that it's more than OK to share what I am genuinely dealing with without shame or feeling any reluctance in doing so. I can't thank you enough for proving who my real friends really are in this. Thank you for letting me vent when I am up against things that have me scared half out of my mind most of the time. This will never be forgotten whether I make it much longer or not. I will take this with me always and it will never be forgotten. Not by me, John, or my family who reads my Facebook almost every day. Your love and friendship will never be forgotten.

I let this and a few other things recently make me feel less like sharing and so I kept from you what really happened to our Thanksgiving. I know that some of you felt that something was up because every time you asked me how my Thanksgiving was, I evaded the remark and turned it around and asked you about yours instead. I didn't want to put a damper on your holiday at the time. I still had that comment about my being a "Camille" in my head (John was so enraged that it took days for him to get over that one, but it took me a lot longer because I feel things so deeply). I was in a lot of pain, and had that MRSA infection growing back again in my chest, near my underarm area again on the right. I know the feeling well. The swelling would not allow me to close my right arm down. The pain had not gone full blown yet, as it did the night that we had to go to the ER at 3:AM in the morning, thinking it was my Liver, only to find out that it was a severe MRSA infection that had gotten into my chest area, involving a Seroma that grew after having that radical, wide excision, Mastectomy nearly two years back.

No wonder the pain was excruciating. My Oncologist made sure to give me Doxycycline to have on hand should these symptoms ever begin again, and I began taking them immediately. It would be just my luck that it happened right before Thanksgiving. Another mass of copays....another trip to the hospital only to be dumbed down and even dismissed as this hospital has done to us again and again (the most arrogant doctors you will ever run into in your life). They actually show more respect for men than they do women right in front of your very eyes. Women are all silly, hysterical, creatures while men are the ones that are never treated that way ever. I don't know what is worse, the infection or knowing what was to come, and they did not disappoint. We knew we had to swallow hard and go because I literally could not close my right arm. My Oncologist sent the referral in right away and the soonest they could get us in was on Friday morning for the procedure to get an IV going and drain the swelling and get samples. Thanksgiving was not exactly what we had envisioned, but I did give thanks for many things, and prayed for hours to God asking for help. By the time we got into the hospital, my arm was finally able to close on the right (it was rather obvious that my instincts were dead on, as the pain began to lessen, and with it, the swelling finally went down). By the time they got the samples back, it showed no infection as the Doxycycline had three days to work on things (thank God I had this at home, it's not a pleasant antibiotic to take).

Every time I go back on the only thing that is keeping me alive (Gleevec-Chemo in pill form), I get infections, and yet if I stop taking the Gleevec, I begin seeing that horrible lesion growing again, and feeling pain where it's growing. I had begun getting very notable pain on that mass under this lesion, which had shrunk, but not completely disappeared from my last PET Scan (it was the one mass that was still there in my chest, but had shrunk a lot). It has started to really hurt again, and just knowing that this flesh eating cancer was eating me up alive there again, it had me reaching for my Gleevec, swearing that no matter what infections I may get, we will deal with them as they come along, but never again will I be without my Gleevec. I just wish I could live a life without Chemo. For me, it never ends. It's daily Chemo or it's death. I am back to taking the Gleevec in a lower dose form, and the pain is going down a little bit under that lesion, and where the main mass began, before going metastatic. John made me promise to never let another living soul ever make me doubt you or fear in telling you the truth of what is going on ever again. True friends want to know, and you have proven to be just that (you don't disappear on me). I love you with everything in me. Thank you......

P.S. On a soapy, unrelated, note, The scoop I put out on my impromptu appearance on Chrissy's show (RHeart Radio) a couple of months back is coming to fruition in front of your eyes right now, so enjoy the fireworks with Dante, Lulu, and their real baby! I told you it was coming (and that a major Cassadine was returning alive and well)! As for Faison, no matter what it looks like now, it's not what it seems. He is not dead.....

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Replies:

[> Re: Raven Update 12/17/13 -- JP (Thank you), 10:48:00 12/18/13 Wed [1]

Stay strong. Thank you for the soapy unrelated note.


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[> [> Re: Raven Update 12/17/13 -- Cynthia, 09:42:17 12/21/13 Sat [1]

I have very rarely posted, but I check here and on Facebook, I get very worried if there are no posts for several days. Yet I know that there are times you cannot post and I think of you so much, praying for you.

I began reading here for the soap updates and immediately tagged the page as a favorite. The way you share is so very genuine and the polar opposite of any Camille types. I've seen plenty of those, you are definitely not one of them. I would not return and check up on you every couple of days if you were.

Having gone through chemo myself, I know a tiny portion of what you are dealing with. I am amazed again and again at all that you have faced and conquered. You are the epitome of courage, I know much of this is a gift God has given you. You inspire me every time you post, thank you for sharing honestly and openly.

You have so many friends and those who love you, do not let the pretenders insinuate themselves or cause you to doubt those who are truly here for you.

God bless you and John ::hugs::


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[> Re: Raven Update 12/17/13 -- Debbie, 11:10:13 12/18/13 Wed [1]

Raven — Even though we’ve never met, you’ve touched my heart in ways you could never imagine. Please know that there are thousands of us out here who genuinely care about all you are going through, and who are praying for your recovery. Never doubt the fact that you are indeed helping others who are battling their own health problems. You are a wonderful example, a shining light in the midst of the darkest night. A beacon of hope for so many people who are living through the pain and suffering of various cancers and other ravaging diseases. Please continue to share the events of your journey with us. We are praying even harder for you when you are down and celebrating with you when you have a good day. I know for a fact that the information on natural supplements you have shared has helped others, because I am one of them. Know that some of the people who have found you did not know you through the soap world. Some have found you by searching for natural cures and for hope. We need you Raven, just as much as you need us. We can lift each other up. And always remember — God can, and does, heal.


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[> [> Re: Raven Update 12/17/13 -- Marie (Hopeful), 22:49:46 12/18/13 Wed [1]

Raven, how about some healing Clay - Red or Green

I bought some red clay supplements for my husband who has a cyst in his foot that makes it painful to walk and he says it is starting to hurt less after a week.

It says not to ingest this clay when on Chemo but I was thinking you can make a poultice and apply to your skin.


http://wellnessmama.com/5915/the-benefits-of-healing-clays/

You have to read the comments

http://www.i-amperfectlyhealthy.com/RedDesertClay-HomePage.html


Best wishes always... to the remarkable person that is you.


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[> Re: Raven Update 12/17/13 -- GoodWillTalking, 11:56:08 12/18/13 Wed [1]

I'm so sorry for what you have been going through. We are here to support you in what little ways each of us can, but you must continue to share your truth. I think it's quite important.


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[> Re: Raven Update 12/17/13 -- Peaceful (Peaceful), 12:28:45 12/18/13 Wed [1]

Sending caring and peaceful thoughts for the holiday season. We all live one day at a time, and need to make it the best day we possibly can.


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[> Re: Raven Update 12/17/13 -- Barbara, 23:18:12 12/18/13 Wed [1]

Hi Raven,
I want to thank you for being so honest, and for sharing your life with all of us. You have been on a very long and hard journey, but yet chose to put it all out there in hopes of helping others.
I have written to you before, when you had questions about your Chemo Induced Diabetes. I too am Diabetic. I read your last post about the cinnamon supplements and I ordered them right after reading that post. They have not arrived yet, but I promise I will keep you posted. And thank you for sharing...
I wish both you and John a very Merry Christmas and a Happy New Year... Stay strong. You are in my prayers.
Love, Barbara


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[> Re: Raven Update 12/17/13 -- Mistyme, 05:34:42 12/19/13 Thu [1]

Raven, I pray for you & for John everyday. I truly believe that you have helped so many people sharing what you have been going through. Please keep us posted on how you are doing when you can. Sending lots of love & hugs your way. May you & John have a Blessed Christmas!


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[> Re: Raven Update 12/17/13 -- Angie Smith, 09:40:34 12/19/13 Thu [1]

Raven I for one have found a greater belief in the power of God because of you. I don't think until you get to heaven you will ever know how many lives you have touched. I want to share this with you,(not my own words, but very powerful)
What God knows about me is more important than what others think about me.
Love you and wishing you and John a blessed Christmas.


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[> Re: Raven Update 12/17/13 -- Jennifer, 22:47:23 12/19/13 Thu [1]

Raven,

I came here to pass on information on a news story that made me think of you but when I saw this post, I feel compelled to respond to it first.

Your story has made a positive difference in the lives of others. It has provided helpful information on a cancer many have never heard of. Your ability to share whatever you are going through provides a real and honest look at the struggle and displays the strength and perseverance required in fighting cancer for those who have never faced it. Thank you for sharing your story.

Now back to the story I saw. There was a story on CBS This Morning that I saw which made me think of you. I want to bring to your attention. I do not know if it will be of value or use to you but I wanted to make sure you were aware of it. The story revolved around a woman with stage 4 colon cancer that was about to begin a personalized treatment created by Eric Schadt and his team at the Institute of Genomics and Multiscale Biology at Mt. Sinai in New York. They recreated the exact cancer in fruit flies and used a super computer along with the patient's genetic and biological data to test all know drug therapies against it and then created a personalized genetic cocktail to target the specific cancer. Mr. Schadt noted that they had much more data on the specific cancer than doctors typically have access to as they can determine the specific gene it came from as well as the pathways and biological processes it disrupted. I realize it may or may not be useful or applicable to you but thought it was worth mentioning. Please know you are in my thoughts and prayers and how thankful so many of us are that you do tell it like it is.

Best,

Jennifer


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[> Re: Raven Update 12/17/13 -- Hannah (Healing Light, Hope & Love), 01:07:44 12/21/13 Sat [1]

(((Dearest Ravenbeauty)))

My prayers for you continue, and I also hope that your genius Oncologist may find something else to add to the Gleevec that will finally bring the miracle of healing to you.

I wish this will my entire heart and soul.

Love you!


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[> Re: Raven Update 12/17/13 -- Ana, 20:22:53 12/22/13 Sun [1]

Hi Ravenbeauty. Thank you for sharing despite the accusatory message. The way I look at things, if someone gets down/depressed/offended or whatever from reading your updates then they should stop reading. No one is forcing anyone to read "unpleasant" things. That being said I hope Christmas is a lot better for you and your family than Thanksgiving was.

Happy to hear about Faison. Him and Obrect are comedy gold together :)

Good or bad, I look forward to reading your next update :)


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[> Re: Raven Update 12/17/13 -- Laura C. (xoxo), 09:52:43 12/28/13 Sat [1]

I'm sorry for your struggles. I watched my dad go through cancer, and it was quite emotional. Like you, my dad had a sense of dignity and courage in the face of cancer. I was grateful to be a part of that. Good, bad or ugly, please don't be afraid to share it with us.


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