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Date Posted: 14:02:34 08/19/13 Mon
Author: GoodWillTalking
Subject: Raven Update 8/18/13

Hey Guys, tough weekend. Still trying to process what's happened. This goes well beyond thinking positive now. This is now all about trying to keep your wits about you, and not drowning. Very different. Feeling incredibly betrayed and alone. We waited for months with the faith of a child for my long time Oncologists office to open. Never barraging him with calls as some of the others, who are also panic stricken have done. He shared some stories about it (one patient actually showed up at his home). We simply waited, prayed a lot, and had complete faith in him. He was the only Oncologist in this area that did not write me off as a dead girl walking. He promised me that he would never abandon me. That he would be there with me every step of the way (I was more afraid of the aftermath as chemo caused so many problems for my mom). I would have never done chemo if I had known that this would happen, and that I would be left alone with all these side effects, to a pack of uncaring wolves. I now have Diabetes, pain that is truly indescribable in my bones, fevers that come and go daily, a strange cough that won't go away, and fatigued to the point where we have had to use a wheelchair at times when we go to the hospital (hard for me to admit, but true). Beauty is nothing when you are going through this. Everything hurts. I can't remember the last good day that I've had. Not one day where I have felt OK and not so incredibly sick. I had a bad feeling about what the chemo would do to me, which is why I refused it for a year, but I finally decided to put my complete trust in someone (I rarely trust doctors with good reason) and now he's gone....

I have these strange HARD, skull lumps in my head, which hurt, a PET Scan that I did recently using long acting Insulin only 5 hours prior, as nobody warned me that this was a no no with most hospitals (the PDF Instruction sheets online, tell the story), blurred vision that is getting worse, and areas that were seen in the brain, which are new. I was holding on thinking that my long time Oncologist would be there to figure out what is going on, and help me because the new Oncologist could care less and barely even hears you (she threw the pictures from my Pet Scan, right in front of our eyes, into my folder, and said it was not necessary to read the CD)!

We sent a second copy of the CD next day air to my long time Oncologist who's last words to me were "I will call you tomorrow as soon as the pictures arrive" and that was 7 weeks ago, and we realize now that he has in fact abandoned us. John and I have gone over every possible scenario in our heads, and nothing makes sense. I had a very uplifting and wonderful conversation with him the last time we spoke by phone, and he said he would call me the next day after he had looked at my pictures, and we never heard from him again. He has not gotten into an accident. He is still alive and well, but for some reason, we are not hearing back from him any longer (and the new recording on his cell phone says that his office is opening on Tuesday of next week). We are just stunned and feel completely defeated and betrayed. The damage is extensive as I will never trust anyone the way I used to ever again. I can't. I am truly devastated, and where are we to go now? The other hospitals wrote me off and were the ones that said that chemo was ineffective and that my case was too far gone (I am supposed to go back to one of them)!

The way we were treated last Wednesday by the new Oncologist (his replacement after they let him go or he chose to leave) is something that you would have had to see for yourselves to realize how horrific and cruel it was. I actually put my head in my hands, and began to cry, and she literally said "is that all" and walked out of the room. I cried the whole way home and John was so angry that his face was red for the entire drive. We have seen rude patients. We have watched them as they shout and scream, and we have never been those people. Always dressed well, clean, respectful, courteous, and genuine. This is a nightmare. Neither one of us deserves this kind of cruelty and lack of compassion. I am dealing with one of the rarest cancers in this country, and I am now dismissed, and treated like the dirt under someone's shoe.

I don't know what we are going to do, but I don't feel the same anymore. I feel as if my soul itself has been crushed. I can't lie to you. I won't lie to you, and tell you that things are great when they are the polar opposite. For the first time throughout this entire mess, I am alone with this, and we are scared half out of our minds.......

In any event, your continued prayers are all I ask of you. I know that prayers are a powerful thing, and we could really use some right now. ♥

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Replies:

[> Re: Raven Update 8/18/13 -- wherly, 09:52:01 08/20/13 Tue [1]

You are both in my prayers. Maybe you could send a letter to your local news station if they have a segment where they help local people or even try sending a letter to Dr. Oz, they might be doing a segment on these type of situations this season. I pray for better days for both of you.


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[> Re: Raven Update 8/18/13 -- Lilly, an RN, 06:58:58 08/21/13 Wed [1]

Dear Sweet Raven girl,

I now live close to the Cancer Treatment Center considered to be the best in the USA.. However, I come from a small southern state with not much at all going for it in the way of healthcare. It really was dismal. As my friends and I entered middle age, we each had to travel long distances for the best care. Those who didn't, who either ignored their chest pain or headaches, or settled for what the local doc in a box had to offer suffered greatly and they are mostly all deceased now because they didn't fight for the best health care. I know you have tried, but you cannot wait upon a man who is not coming back. It doesn't work in the soap story lines either, does it? :)
Seriously, I want to encourage you to MOVE through the despair and depression.

I want to encourage you to broaden the circles on your map. Make the treatment facilities in other states available to you, even, if they are within 100-200 miles.

MANY of my dear sweet childhood friends with cancer go 100 miles each way week after week, month after month. They go because they know the care is better than what is available locally or regionally.

My best friend from school was diagnosed 2 years ago with a brain tumor, and she spent over a year fighting and we prayed for her so very hard. She had her husband to drive her to her appointments and she slept in the car on the way home when possible.

A dear friend of mine with ovarian cancer survived over a decade by being in clinical trials at Johns Hopkins (all meds and treatment free but transportation wasn't). Her husband worked 2 jobs to be able to fly her to Johns Hopkins every 2 weeks for many months, then every month for years. They were not wealthy and never will want to be.

Another friend from school had very advanced and complicated breast cancer, and she traveled even further in our home state for experimental treatment. I believe the round trip each week was 250 miles, by car. In the end, she opted out of Avastin because lots of women were having strokes but she has survived her breast cancer, and the last I heard, was doing well.

Please don't limit yourself because the hospitals and Cancer Treatment centers are over X number of miles from your house. If an excellent cancer treatment center can be reached on a day's journey and back home, then you can receive sedation and anti-nausea meds. to get you back home... Or stay overnight at a McDonald's house type of arrangement.

I have been extremely concerned for you since you put all your faith in the one doctor. I've done that myself a few times ( the OB for my only child's delivery, a specific surgeon for a risky surgery) and sometimes I did end up having to say " Yes' to another doctor.

I can see that you and the doctors in the group you have been going to have burned bridges. I don't think you will get better physically or emotionally with the depression and the turmoil BUT--- if you can get out a pencil and a drawing compass or just some string, you can take out a map of your state and make a circle of 100-150 miles and find yourself a cracker jack, top notch healer and compassionate Oncologist at an Oncological Hospital. You can tolerate a lot more than you think you can if the help is there for you when you get there.

A 2 hour drive sounds like a lot but break it down in 30 minute segments. Likewise if it's a bit longer.

From looking at US stat maps for the last few days and Googling hospital and cancer treatment in-patient centers and out-patient as well, it looks like EVERY person should a good, comprehensive Oncological treatment center within a 2-3 hour drive except maybe in remote areas of Montana or Wyoming ( no disrespect meant to those who live there).. The drive might be a bit longer if you have a 1,000 mile ranch or something but most of us aren't that isolated, Raven.
I've looked at the US maps, not having any idea where you are, and remembering how far my friends traveled every week to live and thrive, or at least to give it their best try. I can't find a single " cold spot" which has inaccessible cancer care and Oncological care.

I have a friend here who had successful treatment for a very complex brain tumor. The Neurosurgeon is a marvelous man and does things which others won't attempt. His bedside manner SUCKS, totally and utterly, but I would not go to anyone BUT this rude and brusque doctor if I needed brain surgery because of his proven surgical excellence.

The Bible is full of " Go forths".
I don't know, and I cannot know, but I felt led to write you about " Going forth" and maybe looking further out geographically.
What happened last year, last month, last week and yesterday is in the past. You are alive in the present, and I want you to be thriving and healing in the future. I love you!!!


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