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Date Posted: 05:05:11 06/15/13 Sat
Author: Annie
Subject: Ravenbeauty's latest update. 6/14/13

Hey Guys, REALLY trying to keep my sense of humor, but failing miserably. I miss the funny, happy go lucky Raven too. Before I began chemo, I was so vivacious and full of nothing but positive energy and hope (my shows were so much fun and brought me so much joy). So much has changed. I don't know if the antibiotic is working yet or not on this MRSA (going back to see the infectious disease control specialist on Wednesday of next week), but I am genuinely scared half out of my mind as I now have a rather significant Seroma growing where they found the MRSA in my chest. It's actually grown larger, and the itching is a nightmare. You can see it and feel it. I don't want to go back to the Interventional Radiologist I saw before because he is flying by the seat of his pants half the time, and barely has time to even do what he needs to do. I kept trying to explain that the last time I had a large Seroma in this exact area shortly after my mastectomy, that it was a REFERRED Seroma. Nothing much came out of the large, puffy, area before (and nothing came out of it this time with the drain either), however when they used the ultrasound higher up, they hit pay dirt. They were stunned that 175cc's came out of that thing and suddenly the large Seroma below deflated rather significantly. Nobody listened to me this time, and so I endured yet another drain for nothing (it was in the wrong area). After it was removed on Monday, a very large Seroma has now grown there with all this trapped fluid AGAIN. Knowing that it has MRSA in it makes me very uneasy.

I put in a call to the Interventional Radiologist at the main hospital that put my port in last December to see if he could help me. He is the best and did a very good job with my port. I am praying that he can get me in and do some poking around to see if my Seroma is referred again as it once was (really don't want to end up in the ER again this weekend). This would also give him the opportunity to get a fresh sample to see if the Doxycycline is making an impact on the MRSA they found in my chest. This stuff just never ends. I know I have to keep going. I have to find a way to keep myself focused and strong, but I am losing a lot of ground here lately. Things are darker now, and we are all feeling it. There comes a time when you are fresh out of cute anecdotes. When we went to the the other hospital on campus to get the drain removed on Monday, I couldn't even fake a smile to anyone. I just feel angry and genuinely exhausted. I just want to focus on the Gleevec and healing, but it's been one thing after another. I'm also incredibly angry with a system that allows a criminal a painless injection. A system that allows you to put your animals down if they are suffering and dealing with a hopeless case or a very painful cancer and yet for those of us dubbed terminally ill (which they have noted everywhere in my chart) have no options. We just have to suck it up and live through pure hell until all of our organs shut down. My hope is that laws will one day be enacted that give people the right to choose. It's inhumane.

I feel isolated. I am forced to deal with this new Oncologist who could care less whether I make it or not. Not only did she prescribe me a sulfa med that I am dangerously allergic to (thank God CVS caught this last week), but we just asked for all my labs from the last 6 months, and she didn't even bother to tell me that my blood sugar was over 350 on THREE occasions, with other very high numbers sandwiched in between! John and I were literally holding in our rage because I have to keep playing ball until my long time Oncologist opens up his new practice. I cannot believe how dangerously careless this woman is! We are going to see my family doctor on Tuesday to get started on Insulin (Levemir Pen) as the new Oncologist would not even help me with high blood sugar that she knows is a direct result from the chemo (I was 104 before and always in range). It's become a completely different place. The last thing you need when you are smack dab in the middle of the battle of your life is fresh out of school Oncologists who do not even have the time to glance at your chart! I am praying so hard that I am popping blood vessels in the hopes that he gets his office open soon. I know he is doing all that he can, but this has become a nightmare. We don't live in an area with a lot of choices. Thank you for letting me vent and share with you. I am so grateful to have you in my life. Some of you wrote things about knowing who your real friends are in this life when things get rough because the people who really do care make that known to you. You really are an extended form of family for me and I love you with every fiber of my being. Thank you for the advice and all the beautiful notes and adorable and inspirational pictures. I will never forget any of this. God bless you now and always. XOXOXO.....óż

I will keep you posted (PET Scan is scheduled for the end of this month). That will truly tell the tale.......

Ravenbeauty's facebook direct link

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Replies:

[> Re: Ravenbeauty's latest update. 6/14/13 -- jana (prayers for you), 09:26:08 06/15/13 Sat [1]

I have never written to you before. God will wrap you in his arms and will protect you when you go to heaven.







God loves you and will envelope you into his arms. We love you - stay strong.


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[> Re: Ravenbeauty's latest update. 6/14/13 -- Hannah (healing light, hope, and love), 21:40:20 06/15/13 Sat [1]

(((Dearest Ravenbeauty)))

Praying with all my might that your beloved doctor opens his new practice, and that you can see him on his first day.

Praying a huge miracle comes your way soon!
Love you,
Hannah


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[> Re: Ravenbeauty's latest update. 6/14/13 -- alex, 23:12:29 06/15/13 Sat [1]

Raven, have you tried manuka honey for the infection? Not in place of the antibiotics, but in addition to it. It has helped my cousin, who has an autoimmune disorder fight MRSA infections.

Best Wishes. You are incredibly inspiring.

Alex


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[> Re: Ravenbeauty's latest update. 6/14/13 -- GoodWillTalking, 11:05:55 06/16/13 Sun [1]

Dear Raven, you remain in my prayers every day for your pain to removed. Please know that your well being is in my thoughts daily. Much love goes out to you.


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[> Re: Ravenbeauty's latest update. 6/14/13 -- kimberly, 13:37:29 06/16/13 Sun [1]

Dearest Raven,

First of all, let me take a moment to tell you that I have followed you from the very beginning. I remember how fun things used to be when we all set up shop - over there -, and I waited, just like everyone else, with baited breath for your updates. We sure did have some great times!

I am begging you to call Hospice. Your insurance will cover it and this should be no cost to you. Why am I saying this? I know John is at work during the day. Hospice is NOT just for the very end times! A nurse can come every day to help you get cleaned up. They can help you with your insulin. They will assist you with your pain. They can work in conjunction with your doctors and save you the hassle of going on some of those appointments. They will do as much or as little as you would like. They will help you be as comfortable as you can be while you wait for your Oncologist to get set up. When John gets back in the evening, the two of you can concentrate on each other.

I love you, Raven. I wish I was there to take care of you.

I'm not making this recommendation lightly. This will allow you some comfort and peace of mind while you focus on the Gleevac and wait for your doctor to get set up. You have to admit that it would be nice to get out of some of those more mundane appointments like labs ...


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[> Re: Ravenbeauty's latest update. 6/14/13 -- JanLovesAMC, 01:57:06 06/17/13 Mon [1]

Hi Raven, just checking in to say, I am keeping you in my prays. I know God is in the healing business...I continue to pray for you to keep the faith!

... Still Thinking about you even when I don't post!

I pray for peace & blessings over your life.

You have been a inspiration by sharing your journey!

Love ya!


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[> Your FB page is like nothing I have ever seen! -- Lynn, 06:29:09 06/17/13 Mon [1]

Your FB page is one of a kind, sunshine! You have thousands and thousands of people leaving you messages because they truly love you! I have never seen anything like it before in my life! That kind of outpouring is rare! In other words, don't give up when you have this kind of love and support! God is working through you my dear. You need to feel this and see this.

I wish I could be your FB friend, but you are at your 5000 limit, and it won't let me send you a request. I read your updates all the time. Please hang in there for all the many fans you have who love you. I don't know how you do it, but somehow you manage to get through the impossible. Keep this in mind! We love you girl! You have an army! XO!


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[> Re: Ravenbeauty's latest update. 6/14/13 -- Laura C (xoxo), 22:55:52 06/17/13 Mon [1]

Continued love and prayers to you. Sending out much hope that the pain will become more manageable or stop. Hang in there girl.


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[> Re: Ravenbeauty's latest update. 6/14/13 -- wherly, 05:34:59 06/18/13 Tue [1]

Your strength and courage humble me, You and your loved ones are in my prayers.


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