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Date Posted: 02:25:01 09/12/13 Thu
Author: GoodWillTalking
Subject: Raven Update 9/11/13

Today was just incredible. I walked into my Oncologists office, and my favorite nurse from the other hospital surprised me, and motioned for John not to say anything (found out later that she put her finger up to her mouth to hush him so that she could surprise me). She snuck up on me, and we hugged and hugged and reminisced long after my appointment even ended! I cried when I saw her, and she had tears in her eyes as well. Oh how I missed her! She would always give me a hug when she saw me in the chemo infusion room. You couldn't even separate us because we are such kindred spirits and go on and on about make up, hair, skin products, Juice Couture purses (my passion) and all things girly and fun! She said that she had missed me terribly and I just could not stop the tears that started filling my eyes. Whenever I got chemo and had her as my nurse, she would make me smile and feel so special. She is adorable and truly caring. She was one of the many horrible casualties from this hospital, which fired the nicest people they had employed there left and right leaving many of the cold and callous behind. This was my first introduction to their new office earlier today. I had built up a protective wall around myself over the past 6 months, but I began to realize I was amongst friends again. It was night and day from how I had been treated.....

When my long time, beloved, Oncologist came into the room, we hugged and I cried so hard, trying to hold back as much as I could, but the tears just kept coming. You could see that he was so happy to see me, and I felt as if I was drowning at sea, and he was throwing me a life raft. I am still taking all of it in here this evening. It was life and death for me to see him again. You have no idea the things that were going through my head when I thought I had lost him. I was giving up and losing so much hope, and after what I heard today (and not from him either), I was definitely not alone. A great many broken hearts out there with some giving up on their own cases due to the apathy and cruelty of the replacement Oncologists. The stories were chilling. So many of his former patients treated with such a lack of empathy and care. Suffice to say that my story was not so different from the others. I had already heard a few stories from some of the people in the waiting rooms when we were there. You could see in their eyes just how scared they were. It's not like losing a dentist. We had lost the only Oncologist who cared, who was sharp, and actually thought outside the box. They replaced two wonderful Oncologists there (one of which Cat met one day when she did chemo with me, and thought was an absolute doll) and replaced them both with these Indian doctors who never smile, walk like zombies, and let you know that they could really care less whether you live or die. Very cold, callous, and as green as they come (not good for rare cases like mine).

As for why he stopped returning my phone calls, I wish I could put the whole story out here, but suffice to say that this hospital is truly despicable! I was not their patient to begin with! When he left another practice many years back when we first moved here, I moved with him to this new hospital BECAUSE OF HIM! Many of us did this because he is a very special doctor with a heart of gold. I wish I could spell it out, but let's just say that they made it impossible for him to return my calls. I came there because of him! I was already his patient from 2005! My family doctor asked me if I had established with an Oncologist yet due to my former bout with Breast cancer in 2001, and I had not at that time so very long ago. She suggested that I do so in case I have any problems in the future. That way, I would already have someone in place, and he was that doctor. I was only there because of HIM! They are truly evil. I have never run into a health care system like this in my life, but I guess it all begins at the top. Their day will come and they may just find someone just like them at the other end of the spectrum, when they need compassion and care the most. It's called Karma and justice.........

I'm exhausted right now, but so very relieved that I am back under his care again. He took one look at the swelling in my legs and feet and was stunned. He put me on Spironolactone and a larger dose of Lasix (40 mg) and praying this counters what the Levemir (Insulin) and Gleevec have done to me with this crazy edema. He's not so sure the MRSA infection is gone, and either are we. Gave me more Doxycycline to have on hand (oddly enough the tablets they gave me that last time were dead pills that did nothing like the capsules did that first time). He requested the capsule version. We talked and talked and got all caught up. We are going to do a repeat PET Scan probably some time in November after I have had a chance t build up the Gleevec again in my system (without the long acting insulin this time).

His wife is so pretty! A very sweet and attractive woman. It was so amazingly wonderful to see him again! John said that he had not seen me this much like myself in ages, and he was right. I had lost my way and felt so beaten down. I will never have to see them again! We are having my records transferred! If the new PET Scan shows that those things they saw in my brain along with that new nodule they saw in my lung, have grown and are still lighting up, then we will follow up with an MRI. I will keep you posted as always.

Thank God for today!

I love you and hope you have a beautiful week filled with peace and joy. XOXOXO!

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[> Re: Raven Update 9/11/13 -- Anonymous, 05:12:47 09/12/13 Thu [1]

Hi Raven,


Its such great news. So happy for you. XOX0

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[> Re: Raven Update 9/11/13 -- Peaceful (Peaceful), 05:29:59 09/12/13 Thu [1]

Happy to hear your spirits are lifted, joy!

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[> Re: Raven Update 9/11/13 -- Panda, 22:26:13 09/12/13 Thu [1]

Raven, I've been following your experiences and just wanted to share that unfortunately as you've found, some doctors are absolutely wonderful and others don't seem to actually care about their patients who are the most scared and vulnerable. Some seem like they only care about being right and beating another doctor/practice w/patients caught in the middle. I had a bad experience many yrs ago w/an oncologist who I only went to for a consult & who gave me false and incomplete information on my type of breast cancer and contrary to what my surgeon told me that chemo was not needed. I found the full paper online that he quoted and it specifically said my type of cancer did not require chemo, but he stopped reading the quote once he got to that part! I don't think he even knew what type of cancer I had. He spoke very arrogantly, not kindly, only caring to be proven right & not about me as a patient as he gave me a dismissive one-size-fits-all prognosis & treatment & didn't even really read my pathology report. He wanted to be in a p*ssing contest with the other doctors/hospital. I did not choose him as an oncologist & went elsewhere. I don't meant to compare my experience to yours but just wanted to say I understand how difficult it is sometimes to navigate the medical system and how big a difference the right doctor makes. I hope you get the help you need from your wonderful doctor. THANK YOU for opening up eyes about angiosarcoma. Do not give up, you are an inspiration to MANY.

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[> Re: Raven Update 9/11/13 -- wherly, 04:25:27 09/13/13 Fri [1]

I'm so happy for you, that you're back with the right Dr.

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[> Re: Raven Update 9/11/13 -- Laura C (Awesome update), 04:00:31 09/20/13 Fri [1]

So glad to hear your spirits are up. Now mine are, too! Keep on going girl.

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