Update 5/17/13 -- RAVENBEAUTY'S ALL-STAR RADIO!

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Date Posted: 11:00:43 05/18/13 Sat
Author: GoodWillTalking
Subject: Update 5/17/13

I wanted to check in and see how you guys are doing out here. Reading your notes has me smiling (nearly impossible to do these days). I read the thread below (my last status report) and could not believe how many angels I have out here. I will never forget your love and support. You have left me so many pearls out here, that I have lost count. Things I had never heard of. Things I had never considered, and so on. God bless you for all of this and more.

I have never said his name aloud (only Cat knows this as she went to chemo with me one day, which made a normally horrible day for me, beautiful), but I can tell you that the man who I call my true hero, will be opening up his own practice here very soon. For all of us that were under his care, there is an end to the madness. The two new Oncologists are fresh out of school and as green as they come. I'm not alone in my fear, as I have spoken to others in the waiting room, and they are as terrified as I am. These two new Oncologists look like college students, and know nothing about our cases. They haven't the time to learn either, so they just read the first few pages of our file, and for a rare and complicated case like mine, this is incredibly dangerous. I've already been turned away by 4 other hospitals, which basically sent me home to die after viewing my PET Scan and knowing it was Angiosarcoma, so losing the one doctor who gave me the strength to fight the odds and even thought outside the box by placing Gleevec in my C-Kit, has been a nightmare for me. At least I know an end is in sight. There is a light at the end of this tunnel!

When I first saw the new Oncologist, she wasn't even going to take my blood and they hadn't seen me for almost a month due to my fracture (THEY ALWAYS TAKE BLOOD AFTER EVERY CHEMO, WHETHER YOU ARE DOING MORE OR NOT)! They want to keep a close eye on your blood to see that the last chemo didn't wreak havoc with your counts (especially Neutrapenia). She said that I looked wonderful and didn't need it! When we looked surprised, she asked me if I was feeling sick. If I was feeling ill, she would gladly take some blood! John and I just sat there utterly stunned because she was going by the way I LOOKED (bad sign)! I was wondering if her next question was to ask me if I still felt that I had cancer or not because I looked great! CRAZY! We went to the car shaking. If I look wonderful, I must be cancer free with no need for further treatment or even a blood draw! When she finally agreed, they found this dangerous M Protein in my blood!

I thank God that my Oncologist is opening up his own practice because I would be in serious trouble if this was the doctors I had to depend on for a case like mine. You don't know the half of it (crazy stuff). It's as if they are brand new beauty school students who are practicing on us for free or something. I can't wait to leave this cancer center! They used the wrong code now on three different insurance filings making it look like I owed several thousand dollars to them each time (and all due to the hospital not using the correct code of 174.9)! I have had to police every billing, and I have been too ill to even deal with this kind of thing. The woman who does all the scheduling is a callous piece of work, which almost had us leaving once before, but I love my Oncologist, so we stuck it out. She's so rough, callous, and nasty that we keep asking ourselves "what on earth is she doing working with cancer patients of all people"! Just found out that one of the sweetest nurses in the infusion room was let go, as well as the super sweet nurse named Lori who was there for ages. CAN'T GET OUT OF THERE FAST ENOUGH!

The past few days, I've been dealing with a lot of blurred vision. This came on suddenly. John helped me test my blood sugar (I was normal at around 104 for ages until I began chemo). It was 254 yesterday, and this was fasting glucose. One of the gifts I was left with after doing this chemo (I thought the numbers would return to normal once I had been off of it for at least a month or two). They kept telling me that my blood sugar and blood pressure would go up, but I never saw numbers like these coming! Even though he gave me Metformin, I was afraid of mixing it with all the stuff I already take, which is already so hard on the liver and kidneys, but after seeing that number, I am now on a STARTING dose of 500mg per day (which is what he originally wrote it for).

I know the blurred vision can't be due to the one half dose I took of Gleevec last week (at least we know I am not allergic thank God). John and I have been battling a cold or something, so I got nervous about taking more doses of Gleevec when we are coming down with an unknown illness, and didn't know what we were dealing with yet. We both took Pharmaceutical grade powdered Vitamin C in mega doses (5000 each), and this is working faster than anything we have ever tried! I never did much C before, but I guess it needs to be Linus Pauley doses to really knock something like this back, and it is! I was so frustrated because I had myself all psyched out to do the Gleevec, and then we started to come down with some bug after the first half dose test (when I went in to see my OB/GYN two weeks back, the whole room was full of incredibly ill people, I guess the masks were not powerful enough). Not one of those sick people hacking away had a mask on.........

If anyone else is on Metformin out here, I would really appreciate it if you could please tell me how long it took before you began seeing your numbers drop (days-weeks)? I am assuming the blurred vision is due to how high my sugar is, but that's just an educated guess at this point. If you also had blurred vision with high blood sugar numbers, please let me know, and if it goes away once the numbers begin to drop. This is very new territory for me (this new blurred vision has me panicked here). Tomorrow I take my first FULL 400mg Dose. John will be with me, and praying that it goes down well without any serious issues. They call me "THAT GIRL" where I have been going for chemo, and get my port flushed, as everything that could go wrong as far as side effects, always hits me hard no matter how hard I chant or pray. I'm THAT girl. My Oncologist mentioned a rare enzyme that I have, which makes people like me hyper sensitive to chemo. Just hoping that it's not too handle. Either way, I will use whatever I must take to make the side effects more manageable for me. This is it. My last hope. I will keep you posted on how things go. If I am not feeling well, you may not see me for a while, but as always, I usually get in here and give you an update eventually. I hope you guys have a wonderful weekend! God bless you! Much love to you!

P.S. As for Prospect Park's latest announcement, it's why I have kept so quiet throughout all of this. I want no part in breaking your hearts all over again (cutting it down to two days-ahem-looking good, right). It's also obvious that the writers must not have ever actually watched AMC & OLTL (or retained any of those memories) because none of the characters are acting like themselves. Very cornball and cheesy with lines they would have never said. WE are all so grateful to have the shows back, but wow........unrecognizable (and it's not the actors fault). They have to read what is given to them. I will watch as long as it's available, but their problem is not viewership, it's the horrible music, lack of anything truly recognizable out of the characters, and the stagy look and feel of the reboot. It's like craving chocolate cake for a year, and finally getting it, only it has this tasteless foam as frosting instead of buttercream. They are ruining what we had on ABC, and then blaming it now on viewership (how convenient)! Just keep twisting the knife PP. Saw this and a lot more coming. Praying I am wrong. I will keep watching and hoping..............................

Over and out. I love you guys.......XOXO......

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Replies:

[> Re: Update 5/17/13 -- Barbara, 22:59:11 05/18/13 Sat [1]

Hi Raven,
I'm diabetic, yes I've had blurred vision from high sugars. My opthamologist told me that blood sugars do affect ones vision. I take insulin and metformin to control my blood sugars and thankfully have not had blurry vision in many years. And it did take a few days for the bluriness to go away. But, we are all individuals, if you continue to have blurry vision, please don't get upset, ask your Dr. as you have other medical issues and are taking other medicines besides the metformin. I know there are different dosages where Metformin is concerned, and I believe also an extended release now. So try not to worry, I know it is easy for me to say. What I'm trying to convey is that perhaps your Metformin dosage will have to be adjusted by your Dr. Before you see a difference.
I need to tell you, what a brave, loving person you are. To share your experiences with everyone. To continue to put yourself "out there".
I wish only the best for you and yours. You are in my prayers every night...

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[> Re: Update 5/17/13 -- Hannah ((((healing light, love & hope), 23:05:51 05/18/13 Sat [1]

(((Ravenbeauty)))

You will soon be under the care of your adored doctor! That sure sounds like a very good omen to me!

Love you!
Hannah

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[> Re: Update 5/17/13 -- Rapido, 06:19:49 05/19/13 Sun [1]

Your post made my day, so happy you are getting back with your oncologist who cares. You are very courageous and strong, hang in there.
I wondered what you thought of prospect park as I did not buy their ridiculous spin on why they cut back. Some fans are so desperate for this to succeed they praise it to the heavens. I thought all my children was dokey and the other show even worse. Great minds think alike and I appreciate your honest comments.

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[> Re: Update 5/17/13 -- princess Nani Kagamine (happy), 23:55:31 05/20/13 Mon [1]

hi lovely Raven.
I was so glad to hear that your trusted doctor opened his own practice. you need strength love and kindness at this time. All I know is the joy I feel every time I see your posts. we all pray for all the good things that are due a wonderful girl like you. Every time things seem dark we will be here with the light. The tunnel may be long but we believe that you will come out on the other side and be well. I love you Raven and will never stop hoping for you. So rest well eat chocolate and smile cause we are all still here for you. Smooches xoxoxoxoxoxoxo

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[> [> Re: Update 5/17/13 -- Misty Griffin (Happy AMC is back), 23:52:25 05/26/13 Sun [1]

I find that AMC is better than ever. The show has only been back four weeks and the plots are moving along at a fast pace. AMC is great and we should support it and OLTL.

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