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Date Posted: 16:26:37 12/07/12 Fri
Author: GoodWillTalking
Subject: Raven's 12/6/12 (WED) FB posting

Raven's latest posting:
Wow! Well, Today was a big day. Talk about being on the same page (very important in something like this). John and I were all prepared to have a discussion with my Oncologist about doing Abraxane in place of the older versions of Taxol, and little did we know that he was prepared to have the same discussion with us! The irony was incredible! He feels strongly that I will be better off on this newer version of Taxol as it is not as toxic and is not solvent based like the regular versions (it's Albumin based). It's more expensive, so we are about to face the insurance company over this (and an even bigger fish to fry, and that's Avastin). He said that if he had a daughter who was facing what I am facing, he would want to start her on Abraxane and Avastin immediately. Angiosarcoma is a very unusual cancer that requires a very specific protocol if I am to have any kind of chance.

The copays are scaring us right now, but he indicated that there are programs we can apply for, and that he and his staff will help us. We need to do get started as soon as possible as I've been getting fevers for the past couple of weeks for no apparent reason, and he indicated that this is a sign that the Angiosarcoma has a stronger foothold than before. I just can't get sick right now. I was almost hysterical today as we listened to the people coughing all around us as they withdrew my blood, with not one of them wearing a mask. A cold or flu for one person could literally end another persons life who lacks the immune system to fight. Cancer patients cannot fight colds and flu's the same way a healthy person can (and vaccines can be extremely unpredictable). We brought our owns masks, but it's the sick and the coughing that should be forced to wear these. Just frustrating....

In any event, we got a tour of the infusion center, and the people there were very nice. The director gave me a hug and welcomed me. She said I am probably looking at two to three hours of infusion time each week, but we will get all that nailed down over the next few weeks. They are having the hospital call me to get a port in as soon as humanly possible. They are concerned about having to work around all the Angiosarcoma that has spread throughout my chest and may want to do an arm PIIC Line instead (anyone who has has had experience with this alternative, any insight you can give me, would be greatly appreciated). He gave me a prescription for EMLA cream to numb the area of the port before each visit as well.

I'm scared, but I'm ready. Up until now, it's just been me and this monster all alone in this dark room with him doing whatever he pleases as I weaken. Very soon, a third and more powerful presence is about to enter that room and I won't be so defenseless anymore. This monster has a surprise coming to him (one he won't like). You know in all the time I have known my Oncologist (and he is one of the kindest and most caring souls I have ever known) he has never ever given me a time frame. He has never said you have only this much time to live, etc ever. Today he admitted that without this chemo getting started right away, it would be my last Christmas. This is it and we know it. We get it, and so we have evolved and opened up our minds to all of this because I want to live. I want to do my shows (they brought me so much joy). I want to do my columns. I want to go shopping and I want to live to see Jonathan Rhys Meyers play Dracula on NBC (from the makers of "The Tudors). It's funny how we take so much for granted. So much we will miss if we are gone tomorrow. It's the little things and there are so many of them that make living so much more enjoyable.

I am blessed in so many ways, and therefore I am genuinely grateful for so much. I have a lot to live for. I just need to be as strong as he is. I just need to be prepared and I'm getting there. Picking out wigs (got it narrowed down although the girl that saw me today said I have so much hair, I may just get thinning and not even lose it all). I already have a few lovely scarves and a hat on it's way. Next week is the meeting with the Orthopedic Surgeon over that newly found herniated disk on my L5 that has caused this Sciatica from hell, than it's off to do the Epidural, get the port placed in, and then we are ready to rumble! But first, I have decided that John and I are going to spend our Christmas having a feast English style (Oh, how I miss Gulliver's Restaurant)! I'm making Roasted Prime Rib, Yorshire Pudding, Gulliver's Creamed Corn, and English Trifle! It will be the last I see of this type of food for a very long time to come. After Christmas, it's back to the grindstone with heavy juicing, etc, but we are determined to have a wonderful Christmas! We will sing Christmas Carols, watch old movies, eat like there's no tomorrow, and just be grateful for this magical holiday, and what it stands for. As Tiny Tim said......God Bless Us everyone! I love you! XOXO! ♥

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Replies:

[> Re: Raven's 12/6/12 (WED) FB posting -- justjay, 04:54:15 12/08/12 Sat [1]

I am so moved by your struggle. Stay positive, and know that there is a strong, loving force that exists within and around all of us. You are NEVER alone. You're going to get through this.


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[> [> Re: Raven's 12/6/12 (WED) FB posting -- Louise, 08:38:38 12/09/12 Sun [1]


Heres several sites to help with prescription drug costs.

http://www.celgene.com/patient-support/coordinator.aspx

http://www.pparx.org/


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[> Re: Raven's 12/6/12 (WED) FB posting -- Tonisgrandma, 04:54:58 12/08/12 Sat [1]

Raven, I've been reading your posts here on Voy for a couple of years now, this is my 1st time posting... First, I wish you success in this fight. You have and will remain in my prayers. From your beautiful words, I can feel thru my computer screen what a truly amazing and loving person you are.
2nd I had a PIIC line put in 4 years ago, in my left arm, I'm right handed, it was done under a local... Really wasn't bad at all, I had no pain. The reason for my PIIC Line I needed strong antibiotics for about 2 weeks time, I'm Diabetic and had a bad infection Dr. thought this was the best route for me... And it was... When he felt the time was right, he removed it in his office, so fast I really didn't know it was happening...
I wish you and yours all the best in your fight... And a very Merry Christmas and Happy New Year.


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[> Re: Raven's 12/6/12 (WED) FB posting -- rapido, 10:27:22 12/08/12 Sat [1]

Bravo to you Raven! Your story is so inspiring. I'm so glad you found a compassionate physician who is determined to fight with you. Having the right physician means life. Hospitals are germ factories, please wear your masks and insist caregivers wash hands. I'm sure the infusion center will be mindful of infection preventing.
I look every day for updates on your condition but I cannot post often. So I will say Merry Christmas and Happy 2013 in advance. Stay strong. Hugs to you and John.


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[> Re: Raven's 12/6/12 (WED) FB posting -- been there (happy), 02:17:22 12/09/12 Sun [1]

I had hodgekins in May of 2000 I had bad vein for chemo I receive a port in my left arm because my cancer was in my chest. The only problem was I slept on my left arm. If your arm get real sore that usually mean an infection. I did not feel the chemo and it never bother me during chemo. I really had no major problems. My prayers are with you.


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[> Re: Raven's 12/6/12 (WED) FB posting -- Monika, 04:32:43 12/12/12 Wed [1]

(((((((((((Raven)))))))))))) I am so incredibly happy for you that you have such a wonderful, caring, doctor!!! I have been keeping you in my thoughts throughout your journey, and am thrilled for you that you are in good hands, and have a wonderful magical holiday planned!!

Me too, I can't wait to see Jonny as Dracula, and I am counting on you writing recaps as only you can write! (GH hasn't been this good in years, and all your scoops are panning out -- doesn't it make you smile?!)

Just know that I am by your side in spirit, a fellow cancer survivor. If any person can beat this, it is you!!

Sending you love and healing thoughts!


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