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Date Posted: 23:14:51 10/17/13 Thu
Subject: Raven Update 10/16/13
Hey Guys, Checking in to tell you what's what here with my appointment from yesterday. I haven't had the energy to really get out here and thank you again properly for all these amazing Birthday wishes, so please accept my apology on that. You threw me quite the party, and every single note or picture meant the world to me. Talk about knowing how to make a girl smile (you had me beaming, and I love you for it). Thank you again for making my Birthday such a special day! XOXOXOXO!
Yesterday was eye opening for me. I was getting so trained to being treated horribly by that new Oncologist that I was actually a little stressed about seeing my old Oncologist again (or any doctor for that matter again). It's crazy but true. So much negative energy had been drilled into me each and every time I had to go there that it became part of my DNA there for a while. I knew we were going to have the pain med talk, and that had me a little concerned. I had to remind myself that it's OK to let my guard down and be vulnerable and be myself with someone again. I cannot tell you what it felt like yesterday to have this nurse, who I absolutely adore, and who has always been so kind to me, run up and hug me, as she does every time she sees me. She always calls me beautiful and gives me a huge hug and then the staff has to try and pry us apart! LOL! We are so connected on so many levels that we could go on forever if they let us! John just sits there shaking his head and laughing, but loving it at the same time. It's good stuff for me.
When my long time Oncologist come into the room, it was like being touched by a warm, gentle, breeze. He was nothing but kind, compassionate, concerned about the growing pain, and what the Gleevec is doing to drive that up (also concerned about my lesion, which I hate to tell you is growing again). That's had me on pins and needles to be honest. I did not want to say anything until I saw him. I felt a popping feeling in that area with a sharp popping sound almost like the sound of a cap gun going off about two weeks ago, and now there is a new wheel that has grown, and some area's are getting red again. Instead of telling me that there is nothing left to try, he actually has strategies we are going to try, and I realized that I was truly home again. I realized that I had someone back on my case who cared, and it was like nothing I can do justice to with words.
He could not have been more loving or kind. I don't know how else to explain this, but after seeing both him and my favorite nurse, and felt all the love and care, I realized what good medicine felt like again. How different I felt, and all because of the way I was treated. That's how powerful this can be to a cancer patient, so you can imagine what it was like dealing with that unfeeling, walking zombie for 5 months. I felt like I haven't felt in months yesterday! John said he could not believe how up I was. I was smiling and laughing and felt like myself again! It was a truly "Blue Sky" day for me. Exhausting because of the drive, but a blue sky day nonetheless.
They let you know that it's OK and that they are truly your friends. That you are in such capable hands. I haven't laughed or smiled like that in ages. You have no idea. I was smiling all the way home, as even the office staff are kind, funny, and wonderful to be around. No more scowling, or being tolerated, or feeling as if you are a mosquito to be swatted away. I could not stop thinking about some of the stories that other patients shared in the chemo infusion room (where I got my port flushed) about what they went through with that same new doctor! You have no idea what that meant to me in a small way to hear these other stories because we felt so isolated and did not realize the extent to how horrific it has been for many patients there with her! She is Shamrock Green, which is frightening enough when you are dealing with cancer (I probably know more than she does, and that's not the way it's supposed to be)! Very unsettling. One common theme is how insensitive and robotic she has been with everyone, lacking even the tiniest level of compassion for the patients who are stuck with her now. I swear to you that I honestly fear for them. Some people aren't always smart enough to know that the choice of a doctor can either make or break you. It can either save your life or be the reason you die of neglect and apathy instead of the cancer itself.
Because I am not taking as much Gleevec, as I need to be regularly due to the intense pain and swelling, he came up with some good idea's for us to try (breaking up the dose and lowering it a bit). He thinks that we may have to go back to the Avastin infusions with the Gleevec along for the ride, but at least he has idea's and brainstorms with us instead of just throwing up his hands and saying that there is not much more he can do. I know in my heart that he is one of the angels walking this earth and doesn't know that about himself. God lets him think he is just a regular human being who is an Oncologist in life, but he was put here to do incredible things for people who would otherwise have no hope or direction. I am so blessed to have him in my life and terrified of ever losing him again.
As for that pain issue, he was open to all options, which made having this discussion so much less stressful. Being in constant pain is not good for the cancer or my blood pressure. We will go to the patch if we must (I am severely allergic to most adhesives), but we are trying Demerol with low dose steroids when it gets really bad, and I can't pull out otherwise. I have to admit that the steroids knock the pain down faster than anything in the world, but at a very high price. We are picking up the Demerol today. He said that if this does not work, we can go to Dilaudid and look at that Fentanyl Patch. He also agrees that Marijuana would be ideal and knows that it has saved some of his patients, but in our state it is illegal, which I hate. I refused the idea of Marinol for NOW (medical Marijuana in pill form), because it has to really come from pure Cannabis to do the trick (the oil and the plant). He actually cares and it shows.
Trying to not panic over the fact that I have a barometer on my skin that basically tells us if the cancer is on the move again, because that lesion, which was fading, will start changing and hurting again. I realize I have not been on the Gleevec as I should be due to the infections and pain, but we are going to get this resolved by making a few changes, and again, maybe having to add the infusions in again of Avastin. Exhausted by the idea, but I don't want to die. I want to live (and he is at least willing to help me survive).
I Will keep you updated as always. I love you! XOXOXO!
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Re: Raven Update 10/16/13 -- Anonymous, 05:40:05 10/18/13 Fri 
Will, thanks for continuing to post Raven's updates.
Raven, you continue to inspire me with your drive and upbeat attitude in an unfortunately ugly situation. I wish there was something further I could do for you, but I am sending you, John, and your beloved medical caregivers hugs and only the best thoughts.
Continue taking care of yourself!
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Re: Raven Update 10/16/13 -- wherly, 16:00:03 10/18/13 Fri 
I'm so glad you are back where you belong. All of you are in my prayers.
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Re: Raven Update 10/16/13 -- Laura C (Ecstatic), 02:53:55 10/24/13 Thu 
Go Raven! Happy Birthday to you.
My dad died from cancer in 2007. He had a really lame doc who was resigned to let him die. Unfortunately, my dad resigned himself and only got in for a second opinion months down the road. He was too late. So I get how much a doc can mean. Cancer requires an aggressive, can do approach and a fighting spirit. So glad you have the right team in place now.
Keep it up girl. We love you.
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Re: Raven Update 10/16/13 -- Anonymous, 12:48:20 10/25/13 Fri 
Can't wait to see Dracula. Hope that you are also watching the Originals. It has Vampires, witches, and werewolves. I love it. Hope you have a great weekend.
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