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Date Posted: 12:51:23 05/14/13 Tue
Author: GoodWillTalking
Subject: Raven Update 5/13/13
You guys are incredible. I love you so much. Your continued notes, and beautiful, and precious photo's are just unreal. You can't put a price on this kind of love. God bless you for it. I usually don't go THIS long without touching base, but my mind has been anywhere but here. Haven't felt much like turning on the computer for days and days now. I sounded so positive in my last update. I didn't know how to even tell you what I am about to say (it took me this long just to snap out of it long enough to touch base with you). There is only so much one can take and then you lose more than just your sense of humor, let alone positive energy (trying......really trying).
The cancer is growing back. The lump that disappeared under my right arm is growing again (it can be distinctly felt). I literally threw up when I felt it in the shower. I'm getting those intense burning pains on the skin over the area's where the tumors were last seen in my body (same as before in every way). The lesion is dark again and growing on my skin where my left breast used to be. I've been a fish out of water for too long. That painful wrist fracture delayed me getting more chemo, and now I am almost two months out, but we learned something from all of this (all it did was beat the cancer back temporarily). All that suffering through the chemo only to find that I was using a water pistol on a house fire. I had rounds of very HIGH DOSE chemo, and two months was all it took to see it back again. The burning is unreal. This form of cancer is the most monstrous thing I have ever seen in my life. I'm left with all of the side effects from the chemo and yet the benefits were only short lived at best. I've never been more angry or scared in my life.
They say we don't usually make it past 18 months with Angiosarcoma (and I can see why). John and I have both have done a lot of crying and wanting to throw the furniture around, but I am not giving up (I can't). I have to live long enough to prove to Novartis that Gleevec could save or prolong the lives of other people with this aggressive, painful cancer. If the Gleevec could even give me another year, that would be a miracle and something they couldn't ignore, possibly leading to trials. I have to hold on for that reason alone. Most Oncologists would never put Gleevec in a C-Kit with Angiosarcoma. Most are too busy to even read through your file, let alone go out on a limb for you or think outside the box as my beloved Oncologist did. I owe a big part of this to him. He did everything he could do. He made all the right calls, but this cancer is like no other.
As upset as I have been, I wanted you to know that I began the Gleevec (special type of chemo in pill form usually given to Leukemia patients) earlier today. We had to get the go ahead from the new Oncologist, but she gave me her official nod, so now it's in God's hands. It's the last hope I have. My C-Kit was so off the charts positive to this drug (it has to work). It just has to. I know that some people cannot tolerate it or they have had liver shutdowns, but we have prayed and prayed that my body would tolerate it enough to give me a fighting chance. I took a half dose (it's scored in the middle) to make sure I didn't have a severe anaphylactic reaction to this drug. Dizziness, sinus pain, and flushing, but so far so good. They want me to start one every other day because of how fast I crashed before on the prior chemo, and then build from there. Taking a Phenergan for nausea along with a Benadryl with today's dose and each dose going forward. Praying this gives me the chance I need. So much riding on this drug. I promised to keep you in the loop, and I always will until I can no longer do so on my own. I love you. As bad as this thing has gotten, I'm still NOT throwing in the towel. If you want to say a prayer for me, please pray that the Gleevec works. Prayers are more precious than gold. I love you.......
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For Good Will Talking, Along With My Kind, Loving Fans & Friends Not On Facebook. -- 
Ravenbeauty, 16:19:56 05/14/13 Tue [1]
Hey Guys,
As you can see, things have been a bit dark here lately. I don't get out here very often anymore, but wanted you to know that I read your every note (it may take days to a couple of weeks sometimes to stop by, but I truly do). You have given me so many smiles and moments of hope with your lovely notes, prayers, and your many suggestions.
Thank you so much for being there and lifting me up when I fall. Sometimes it's hard to stay focused and positive due to what all of this has done to me, but your girl is not dead yet. She's not turning in the towel, although there have been days when I fee like I am battling a monster that cannot be defeated. Having the cancer grow back after all this chemo makes me sick to my stomach, but I feel my beloved Mother's spirit beside me, and it was a fierce one until Leukemia took her beautiful smiles away. I'm not giving up. I didn't come all this way to let it go now.
Tomorrow is my second dose of Gleevec (every other day for now). Scared of the many side effects, but knowing that this is truly the last hope I have. If I can manage to stay alive another year, I know that this could impact others with Angiosarcoma who have no hope. Please let me do at least this before I go, my beloved father in heaven. Novartis will have to take notice of my case even more so if I prove this. They could then make it available to others with my rare cancer who are now off label.
God granted me a miracle in my getting this drug, which we could have never hoped to afford or qualify for, so I bless Novartis as well for their incredible generosity. I'm the guinea pig for now with this Leukemia drug, but I hope one day when I look down from a better place, I will see it being prescribed for others who will still be fighting to stay alive and battle this incredibly invasive, aggressive, cancer.
If you have this rare cancer or know anyone else who has it, beg your oncologist for a C-Kit (a simple test) done with the drug Gleevec. Tell them about my highly positive stain with Angiosarcoma and this particular drug. It shouldn't be such a shock when you stop to think about it. Leukemia is cancer of the blood. Angiosarcoma is cancer of the blood vessels (dangerous cousins).
A big hug to all of you who have left me messages of love and hope for me. Thank you so much "Good Will Talking" for taking the time to voluntarily post my updates from my official Facebook. Very kind of you. God bless you all now and always......XOXOXO....
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Re: For Good Will Talking, Along With My Kind, Loving Fans & Friends Not On Facebook. -- GoodWillTalking (Hopeful), 02:10:53 05/15/13 Wed [1]
You're so very welcome, Ravenbeauty! I'll be praying for good results during your Glevac treatments and I am happy to update your Voy friends, until such time as you are well enough to carry on. Keep up your positive attitude, whenever possible and know that we are all thinking of you and praying for your recovery. Much love and good thoughts are going out to you!
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Re: For Good Will Talking, Along With My Kind, Loving Fans & Friends Not On Facebook. -- Anonymous, 05:33:28 05/15/13 Wed [1]
I'll always be by your side every step of the way. Love you Raven.
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Re: For Good Will Talking, Along With My Kind, Loving Fans & Friends Not On Facebook. -- Hannah ((((healing light & love)))), 06:42:01 05/15/13 Wed [1]
Dearest Ravenbeauty,
Surrounding you with healing light, love, & hope!
A setback is a setback - not a failure.
Your new treatment may bring a miracle your way!
Love you!
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Re: For Good Will Talking, Along With My Kind, Loving Fans & Friends Not On Facebook. -- Peaceful (Peaceful), 12:19:56 05/15/13 Wed [1]
Many good thoughts are being held for you, stay strong and positive.
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Re: For Good Will Talking, Along With My Kind, Loving Fans & Friends Not On Facebook. -- Rapids, 07:10:53 05/16/13 Thu [1]
Raven your courage and strength are inspirational. Gleevac is a good drug, stay hopeful.
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Re: For Good Will Talking, Along With My Kind, Loving Fans & Friends Not On Facebook. -- Blaire (Hopeful), 02:17:00 05/16/13 Thu [1]
Hi Raven and Goodwill:
Raven,
I have been reading your soap blogs for years, now. I have been sending you prayers since I read about your illness.
Last October, my friend Catherine discovered a lump in her breast. She had a mastectomy, and is now, doing fine. As everyone must make a personal choice in the route of treatment they take in this situation, my friend decided to go the natural route, opting to speak to a naturopath and staying away from chemo. Last night, I learned that she had been taking iodine as a form of treatment. The topic came up, because I had been looking for treatment for hypothyroidism. I also note that If you decide to supplement with iodine, you should take these co-supplements in order to avoid detox symptoms, though some just take 50mg Iodorol and are fine:
- - ½ tsp Natural Celtic Salt, Himalayan Pink Salt, Redmonds Salt or Hawaiin black salt
- - - If the Sea Salt is pure white, it is unacceptable (minerals have been stripped out )
- - 200mcg selenium (L-selenomethionine preferred)
- - 400 mg Magnesium - Glycinate preferred
- - 2,000mg Vitamin C - Ester-C preferred - do not take with iodine
- - ATP Cofactors caplet contains both 100mg B2 & 500mg B3 non-flushing in the correct ratio. Take 1/2 caplet with iodine up to 25mg, then one caplet for each 50 mg iodine,
- - - Cost Per Day for required supplements = 75 cents/day, 12.5mg iodoral = 25 cents/day
- - - All prices from Amazon.com ( Free shipping > $25 )
* Complete Details at http://tinyurl.com/iodine-references
I am also noting that I am choosing to take Iosol drops, due to its being more easily assimilated.
I am sending this information, b/c I have a feeling that this may help you in your case. The book about iodine and the reason why most Americans are deficient in it, as well as its significant links to breast cancer, is called "The Iodine Crisis" by Lynne Farrow--breast cancer survivor and advocate. In the book she states why iodine is not used as it had been for the past 15,000 years before the 1970s for treatment of illnesses such as breast cancer, thyroid function, and even syphillis! Lynne also describes her interactions with big-med doctors during her period with breast cancer. Interestingly enough, Farrow is a journalist, like you (I see you in this way).
There there is also a book by Dr. David Brownstien, "Iodine: Why You Need It, Why You Can't Live Without It." You see, the theory that Ms. Farrow supports is that breast cancer is caused by rampant deficiency in iodine, a necessary nutrient for bodily function, and bromine- poisioning--bromine is quite ubiquitous and can be found in mattresses (flame retardants), furniture, and even as a replacement of chlorine. You see, bromine is the antidote to iodine, which would be why most people are iodine deficient despite its being in seafood, seaweed, sea salt, and eggs.
Baby doll, I hope that helps you in any way--I mean, maybe, you've heard of iodine treatment.
God Bless, and I love you!
--B.
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Re: Raven Update 5/13/13 -- Harold's Bone, 14:20:40 05/16/13 Thu [1]
Hey Raven, thanks for checking in. Wow, I can only imagine what you are going through. I wish I had something to add.. I'm just happy that you have pursued getting medication that is hopeful in your case. A friend had prostate cancer, and his meds would have cost $100 a day, but he was able to get them from the pharmaceutical company for free. He is now cancer-free.. I am not a religious person but for you Raven, I will say prayers. Stay strong, you are a true inspiration.
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Re: Raven Update 5/13/13 -- Anonymous, 12:56:47 05/17/13 Fri [1]
Raven, you continue to inspire me! no matter what pain and anguish you're experiencing - you find the strength to try to help others who could be suffering with the same illness. That takes a lot of strength and giving.
I can only hope you have some relief soon. I send you my best wishes every day. Thank you for your strength and courage.
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