Raven Update - 1/30/13 -- RAVENBEAUTY'S ALL-STAR RADIO!

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Date Posted: 02:37:34 01/31/13 Thu
Author: GoodWillTalking
Subject: Raven Update - 1/30/13

Hey Guys (War And Peace Alert), Many of you have been fans of my column since 2001, and my radio show since June of 2012, but since I was diagnosed in October of last year with this rare, and aggressive cancer, you have become friends (not just fans and readers anymore). You have become a form of extended family (with my true family succumbing to cancer). I never thought I would find myself alone when you need family the most, but the people who would be worried sick over what I am going through right now are in the ground. John and I talk about this a lot lately because he is horrified by certain things that are as foreign to him as they are to me. Thank God his family has stepped up, are helping us, and being there for us or I would literally not even be able to afford treatment (we have done all the grant stuff, and tried to get help, but when you are now on Medicare, and you are talking about a drug as wildly expensive as Avastin, good luck because we have tried more than you know). Please don't offer me money as you know how I stand on this subject already (it's not that I am ungrateful for the many things you have wanted to do for me, but it's not me, and not something I would feel comfortable with). I have never taken a dime from any of you, and I never will. You are not the people who should be stepping up. If my Mom, Grandmother, and Grandfather were still alive, things would be so incredibly different. It's made things harder for me (harder to go through something of this magnitude without the people who truly love you, and would fully get what the hell is going on over here).

I know in my heart that I am blessed to have such lovely friends, who have become family for me throughout the years. They don't scatter to the winds when there's trouble, if anything they can't rush in to help fast enough (my Mom must be turning in her grave). My mom was such a source of strength for me in every conceivable way, but as I said last week, John and I had something happen that made us quite aware of the fact that she is definitely with us and watching over me. My grandparents were amazing people. I've learned through this nightmare that family is not biological, it's the people who have entered our lives that have truly stood by us, genuinely care, and want to help. You have helped me spiritually, and I love you for it. You have lifted me up and even encouraged me to always show my true feelings, and never bullshit the home team. If I am feeling what comes naturally to someone who is going through something of this magnitude, that you don't want pretty lies or a perfect Raven. You want the real me, and what I have every right to feel throughout this dark journey. I don't want to fake a smile and spew like a robot if this is not how I am truly feeling. It serves no purpose and is actually unhealthy to stuff your feelings inside as a cancer patient. I have been told every step of the way that what I am feeling is not only natural and to be expected, but that I have shown unusual strength and determination. I am just a human being. I don't have all the answers (none of us do).

My Oncologist said something to me weeks ago that we discussed out here under one of my status reports, which was something I truly needed to hear at the time. He told me that I was one of the strongest women he had ever known, and went on to say that if I were smiling, giddy, and not scared, he would be extremely concerned. He told John and I as clearly as he possibly could, that medically speaking, I'm not supposed to really be here, but I am here (he deals in reality and not Cliff Notes). As you know, we were turned away by 4 hospitals (one that actually specializes in rare Sarcoma's) who felt that my case was a hopeless one. I am battling two forms of cancer, and one of them takes people out in 18 months or less typically. A weak person, who was not summoning up as much positive energy as she could given this particular set of circumstances, would have given up, but I didn't. It was a lot of calling around, faxing all my information again and again and again, long, painful car rides, John being docked from work each time, and setting ourselves up for yet another painful fall each time. We did all this because neither of us is weak. We are people dealing with a very real and frightening situation and doing the best we can. I am so grateful to my Oncologist, who was the one medical professional who has never given up on my case. He encouraged me to fight this despite what the other doctors were telling me and I have (that's fierce determination and positive energy in spades)!

I still forced myself onward when they sent me home to die. When one Sarcoma specialist said that there were just too many of these growths in my chest to go after, and that chemo is not very effective on Angiosarcoma, I had a lump in my throat because he was telling me something like this, and he's a Sarcoma specialist! He said that he has seen this become a painful waste of time for a case like mine (I still refused to cave). If that's not positive energy, I don't know what is!

He said we are looking at a large mass on my left chest wall, a large tumor under my right arm, scattered, cancerous lympnodes, with one dangerously close to my heart, a growth straddling my clavicle, a growth in my mediasternam, and signs of all of this moving towards my lungs, with one large painful lesion on my skin, which I have had to remove again and again surgically, which just keeps growing back and spreading the cancer even further as we remove them (although since chemo, it has lightened and begun to fade somewhat, which is the only thing giving me hope these days). I bring this up because I don't think any of you out here, who has been with since the beginning of all this last October, would ever tell me that I am weak, and need to be more positive. I feel that given the cards that I have been dealt, I am being as positive as I possibly can. We all think we have the answers until it's you at that door and suddenly all of your great wisdom goes right out that window. We have all the answers until it's us, and then we suddenly realize we don't know a thing. All those great words of wisdom go right out the window. I know because I am referring to myself (this is not directed at any of you, but rather a life lesson (I) have learned the hard way). I thought I had all the answers. I just needed to be incredibly positive, think good thoughts, do a heavy regimen of natural treatments instead of what my Oncologist was suggesting that I do, love myself, chant, meditate, and all of this will go away.

Before my mother succumbed to chemo induced AML (Leukemia), there was this short period of time where she didn't want to talk to us sometimes. It passed, but I was hurt at the time, and didn't understand. She was lying in the hospital, incredibly ill from the chemo, and we were putting pressure on her that we never realized at the time with all our talk of positive energy. I thought I was helping her, but I was not allowing her to grieve or feel what came natural to her at a time like this. She said that she felt incredibly sick, and that the bone pain was so bad that she wanted to die sometimes, but I rushed in with all my bright ideas about her attitude, and then she wanted to hang up. I eventually got it. She was simply trying to vent and vocalize how she was truly feeling, and we were not allowing her to freely vent, and feel what comes natural to a dying Leukemia patient. We were shaming her in a way as if she were weak to feel any of this. It's a lesson we should all learn from because I think sometimes people don't truly realize how it can be a double edged sword for the person who is actually living it. I get it now more than I ever did. She just needed to vent, and I must have seemed like a screeching, annoying, overzealous cheerleader at a time when she was feeling what was completely natural to feel! She wasn't doing anything wrong! She needed an ear, not an expert! It haunts me sometimes, because now I am walking in her footsteps and I truly get it.

Anyone can listen to any of my radio shows to hear how bubbly, vivacious, and positive I have been, but now over the past month, I m genuinely as sick as I have ever felt in my life. My Oncologist said that he feels strongly that this blood test they are doing will reveal that I have this enzyme that causes some of the severe reactions my body is having to this chemo. He was so hoping I would not be a case like this, but it is what it is. He feels that everything that is happening to me is at an accelerated rate. Our family has been studied for our rare cancer genes (I elected to not participate because I knew it was probably as bad as the rest of my family and didn't want to know at the time). You have actually commended me on my honesty citing that it could help another person out there not feel so alone one day if they are in my shoes. It's not always easy to share some of this, but I believe in my heart that by truthfully sharing the bad and the good, it will help others. My main reason for sharing was that I wanted to bring as much awareness as I could to Angiosarcoma and what to look out for as doctors never tell you that this could happen as a result of radiation to the breast. I think it's been good for me as well. I've been able to just be me and vent honestly and fully. I'm not quite as bubbly these days. These past few days, I have honestly begun to rethink the chemo (I would be lying if I told you otherwise). Bad, good, or indifferent, it's what I am genuinely feeling. Things are getting bad over here. I didn't realize it would be THIS bad. I honestly didn't.

The intestinal problems are so bad that I have felt like I am going to pass out from it. My blood pressure was always about 120/80 and now it's 188/98. My blood sugar was only 105 during my last PET Scan in September, and now it's at dangerous levels of 231 and higher (they have told me that this is normal with chemo, but it makes it no less frightening nor does it lessen how sick its making me). I have this bizarre crushing headache that won't go away no matter how many herbs or pills I throw at it. I think it's the blood pressure, so thanks to a friend out here, I immediately began taking Hawthorne, and am hoping this will help. The nose bleeds are constant and crazy. The body pain is insane (my feet are literally on fire). I am having chest pain, but it's hard to know what is happening because that is where so much of the cancer is located (over my heart).

Yesterday my Gynecologist had to squeeze me in for an emergency appointment (like I really felt like going to another hospital with the flu everywhere when I want to just sleep and stay in bed), but we had no choice. I have felt burning like I have never felt in my life and it extended to more than what you are thinking right now. It began after my first chemo session and yet they said it was common to have rashes so I figured it would die down or wane, but we found out that it's extended to other parts of my body. It's been almost unbearable. They wanted to put me on 30 days of Ketaconazole, but my Oncologist was not comfortable with that, and suggested Diflucan (Fluconazole) for 14 days. Actually both interact with Abraxane (Taxol) anyway. He said he has never seen anything so raw. The pain was so bad that I had to call John to come get me and they got us in. I've never had anything like this before (it's now down the back of my thighs). The headache won't go away, so yesterday I had the fit of my life. Enough is just enough! I've been battling something on top of all of this as you know because of my white blood count, and the soreness on my scalp, had me ditching my new wig yesterday in favor of a simple, soft scarf. John knew something was pretty wrong when he saw me not wearing my new wig and opting for a scarf instead (just not feeling it right now).

I don't know what else to do. I don't want to give up, and up until now, I have been strong and I have been determined, but I have never felt like this in my life. This is more than rough. It's something else. We already cut back to once every two weeks, but the nurse even admitted in the infusion room that the doses they are giving me are huge in comparison to what she is used to seeing, so it's complete overload (they are trying to be incredibly aggressive, but this is taking me out here) . Then we open our mail this weekend and my insurance turned down my coverage for the Avastin, which I have already been treated for and show that I would owe $24,000! Even John could not sleep! It happens over a weekend, so of course we can't reach anyone! I was told by my hospital that this had all been handled, and yet we had just finished another Avastin treatment on Thursday, January 24, so that would be $50,000! Then we receive another statement from the provider of my part D coverage, and it shows that the Gleevec, which they out and out denied, and so kindly left me an electronic message about (on NEW YEARS DAY no less) is now showing that I picked up Gleevec (a drug they denied me) at some pharmacy 4 hours away and that I owe $2787.00, and that Medicare had been billed! John was literally holding me and repeating over and over again, just hold on, just hold on, we are going to make it through (crazy)! I spent all of Monday making calls and getting this straightened out while the chemo was peaking in my system. I honestly thought I was going to lose my mind! WTF! They deemed the Avastin medically unnecessary and billed $24,000 for just one treatment! I was literally screaming......are they crazy! THIS IS THE LAST THING I NEED TO DEAL WITH NOW!

I need to focus on healing and just making it through how sick this is making me, and yet I have to police all this insurance crap! Apparently my hospital entered the wrong code (should have been 174.9) and not (171. something or another that they used)! No wonder, but we spent the weekend scared half out of our minds as anyone would feel if they knew they were about be billed over $24,000 (who has this type of money)! Thank God I reached a lovely person at the pharmacy they claim I picked the Gleevec up from (a drug they denied) that is hours and hours away from me, which we would have never gone to, nor would we have had the almost $3000.00 copy! The manager of the specialty pharmacy confirmed that it was never picked up. Medicare was never billed, it was never fully processed, and that the guy I spoke to should have never told me otherwise and scared me like this, so............. I am not quite as bubbly and cheerful these days. I know many of you have told me that I should put all of this in a book and publish it, but just being able to vent is enough for me. I am a strong person or I would not have made it this far, but I'm not so sure I am going to continue. I have to be honest. It's just too much. I am hoping that I will feel differently before my next scheduled treatment on 2/7, but right now, I feel incredibly sick with too much going wrong here. I will keep you posted as I have always done (promise). Really needed to get this out. Thank you for letting me. I love you guys so much. I hope you have a wonderful week. The strong Raven usually snaps back, and I'm hoping I can if some of this dies down, and we can come up with a less invasive dose, etc. ♥

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Replies:

[> Re: Raven Update - 1/30/13 -- Peaceful (Peaceful), 03:30:30 01/31/13 Thu [1]

Just sending love and lending that ear.