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Date Posted: 09:37:22 04/16/13 Tue
Author: GoodWillTalking
Subject: Raven update 4/15/13

I'm so sorry that I have not posted much, but the pain from my wrist is worse than the Mastectomy I went through. It's been three weeks, and I'm starting to get scared that it will never end. It wakes me up and keeps me up. Unable to do much without John. I've never been a quitter. I've fought so hard to beat all of this since it began 18 months ago, but we keep being hit with these things that are both frightening and soul crushing. We have received both good news and really bad news here this past week. The new Oncologist squeezed us in on Friday because I had what looked like a blood clot moving from my jugular to my port (a bizarre thick bruised line that was making it's way down to my port in a straight line). I realized that with all of this going on, I had not flushed my port in over 5 weeks. I had heard of people going longer and did not realize it would be a danger at only 5 weeks. This thing began moving faster towards my port, and we got to the cancer center, and had it flushed after they injected me with CT Contrast to make sure the port was still OK (thankfully it was, and sure enough, the strange bruised looking line has disappeared). They really weren't sure what the hell it was.

My bones have been throbbing, and I always feel like I am burning up (sometimes I have a fever, and sometimes I don't). I just feel incredibly sick. I thought things would ease up since I am 5 weeks out from chemo, but no such luck. They won't let me do chemo NOW because they are already worried that the fracture may not heal due to the Avastin I was being infused with as is (might explain the excruciating pain in my fractured wrist). It won't let up and I will be running out of Percocet soon. I've been using so many things to help this nightmare heal. The longer I go without chemo, the bigger chance I take that the cancer will get a stronger foothold on me (scared).

The bloodwork that just came back is the terrible news I spoke of. We are beyond scared. There is no other way to explain it. I really need my long time Oncologist right now, and am praying like crazy for the day I can return to his care. We really need him now more than ever. The new Oncologist didn't even know what all these "M" symbols were on my bloodwork. She said she has never seen them before on someone's bloodwork. We later found out that having this letter appear throughout your bloodwork can be indicative of Multiple Myeloma (a form of blood cancer). I am sick to my stomach right now. We don't have confirmation yet, but to say I am a nervous wreck, would be a gross understatement. John and I go from screaming to crying over all of this Both of us drawing nearer to a breakdown. This is just crazy. It's crazy, brutal, and overwhelming. The symptoms are exactly what I have been going through, and I have never had this dangerous protein in my blood before. I know I have nurses and doctors out here as well as others from all walks of life. I would be grateful if if you could shed some light on this "M" Protein. I've read what the Mayo Clinic had to say, but I'm looking for someone who may have experience with Multiple Myeloma or the "M" Protein (it just never ends). Scared half out of my mind. :(

The only thing that keeps me holding on right now is that Novartis came through! I just received my first shipment of Gleevec! The timing is so ironic. So many people to thank, who worked on pushing my case through. We worked so hard on getting this drug! I'm off label, and so this seemed like such a long shot, but I had my positive C-Kit for their drug, and a few angels out there that helped to make it happen. When I finally do see my long time Oncologist, who I miss terribly right now, I'm going to give him such a hug! I prayed to God so hard to get this drug! I'm sending a card to the woman at Novartis, that told me that she was going to make it her mission to help get me this drug, and thank God for her, because it worked! I would send her a gift, but apparently that's a no no. The new Oncologist is not allowing me to take one yet. She said it will interfere with my fracture healing. I want so bad to take one right now. I have a new X-RAY Being taken of my fracture on the 23rd, so if it looks like it's finally mending, I can start the Gleevec! It's the only chance I have left. So there's the good, the bad, and the ugly of it all.

If it were not for your love and support, I am not so sure I would be here right now. You and John have been the angels and the light I so desperately needed going through this nightmare. I honestly thank God for you when I say my prayers. Thank you so much for all the adorable pictures, and beautiful notes. I wish so much I could answer them as I used to, but I know you understand. God bless you. I will keep you posted (if I am unable to, John will). I love you. ♥

P.S. My long time ABC source still keeps throwing things my way, but I just haven't been feeling much like soap scoops these days. He kept reassuring me through all the denials that Genie Francis was returning, and we both smiled when all those drains became unclogged, and I was vindicated on that one. I will tell you that someone you never expected in a million years to return has just signed on the dotted line. I told you that the dead would rise again and GH is pulling out all the stops here lately. The show is almost magical again! An hour of smiles for me each day. Love love love! :)

I hope you have a wonderful week. Please know that you mean the world to me (truly). I am so grateful for you. God bless you.....XOXOXO....♥

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Replies:

[> Re: Raven update 4/15/13 -- Hannah ((((healing light and love)))), 20:48:27 04/16/13 Tue [1]

(((Dearest Ravenbeauty, keep fighting! You will win!)))

I believe that it is a beautifully positive sign that Novartis came through for you! My prayers and loving thoughts for you continue, and you are always in my heart!

Love,
Hannah


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[> Re: Raven update 4/15/13 -- Mistyme, 01:54:53 04/17/13 Wed [1]

You are in my prayers! Sending you lots of love & a great big hug!!!


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[> Re: Raven update 4/15/13 -- Louise (Love), 12:32:12 04/17/13 Wed [1]


May God's light shine upon you and John in your darkest hours and give you peace.

Please watch, listen and sleep well.

http://www.youtube.com/watch?v=cJC93aehXV4


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[> Re: Raven update 4/15/13 -- Louise (Love), 12:43:30 04/17/13 Wed [1]

Addition to my post. Make sure you watch Brian Crain - Rain with the boy and the umbrella.


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[> Re: Raven update 4/15/13 -- Samantha, 13:21:29 04/17/13 Wed [1]

I am so sorry for your pain. I'm praying for you. Your strength is beautiful and I'm grateful for all the years you've entertained us. I pray God will grace you with relief and good news.


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[> Re: Raven update 4/15/13 -- monika, 08:46:55 04/18/13 Thu [1]

Raven, I am so sorry you are going through this; I wish I could help take away the fear and the pain.

I am sending you lots of love and hope -- hang on to the hope of the gleevec! Fingers crossed it is your miracle.


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[> [> Re: Raven update 4/15/13 -- Rapids, 00:45:21 04/19/13 Fri [1]

Thinking of you. Thrilled to hear about the gleevac and hope you get back to the oncologist of your choice very soon. He will know what to do about the new lab concerns.


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[> Re: Raven update 4/15/13 -- BW, 11:09:47 04/18/13 Thu [1]

We are continuing to pray for you both. Believing the right people will be brought to you to give strength and the wisdom needed.


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[> Re: Raven update 4/15/13 -- Jo, 11:16:11 04/18/13 Thu [1]

Thoughts and prayers are with you! I haven't posted in forever but, I keep checking in here because I'm not on your FB.


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[> Re: Raven update 4/15/13 -- jordan (hang in there raven), 00:07:33 04/19/13 Fri [1]

My friend has uterine cancer...Kaiser Hospital doesnt know what stage. Big cover up...She has to wait six months to get disability payments. She could be dead by then...Her worksite cancelled her policy while she was going for treatment. called this abandonment of position. Kaiser want 30,0000 in unpaid bills.. This is california.. hang in there Raven.. Me and Rose are both praying for a positive end to your medical nightmare..


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[> Re: Raven update 4/15/13 -- Tbee, 12:40:51 04/30/13 Tue [1]

Raven, if you do in fact have MM, I know one of the very top doctors in the US for this cancer is located in Little Rock, Arkansas (believe it or not!) at UAMS. He treated my father. I don't have his name in front of me, but I can find out if you need me to or are interested. While I think your case is more complicated, I would not rule out checking this out if you have MM. My father's was diagnosed with a broken bone. I believe it is a cancer of the platelets in the bone marrow. Anyway, hoping and praying that you find answers and also that you heal and respond to treatment!


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