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Hi all, it's shebear! And I have an update about the stupid cancer

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twin1300
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Hi all, it's shebear!  And I have an update about the stupid cancer Empty Hi all, it's shebear! And I have an update about the stupid cancer

Post  Guest Mon Mar 19, 2012 9:39 am

Hi all!

I know I've been a stranger around here, but I thought I would add this site to the small list of places I visit online.

Unfortunately, the cancer news is pretty bad. I have carcinoid cancer and am at stage 4. The surgery I had in January was a bust and the only thing it did was give me a new, nasty looking scar. Oh, and some bad complications. I ended up in the hospital 3 times, once for the surgery and twice for complications. I was in the hospital a total of 20 days. All I can say is nasal gastric tubes suck and I don't think I will ever voluntarily eat ice chips or jello ever again, lol! I have micro-tumors throughout my small intestine and liver that cannot be removed surgically because they, quite simply, can't see them. There is no cure for this.

The cancer is very rare and falls under the category of Neuro Endocrine Tumors. There are only 120,000 people in the US with it and only 12 experts who treat it in the entire world. Of those 120,000, only 60,000 have carcinoid and of that group only 6,000 have carcinoid syndrome along with it. The tumors are different in several ways, the most important of which is that they are functioning. My tumors secrete serotonin, a lot of serotonin. That is what is giving me the carcinoid syndrome. My syndrome symptoms are rapid heart rate (110 at rest, over 140 when I stand up), very unstable blood pressure (on the low side) and flushing. The heart and blood pressure issues cause me to faint. So, I've been on bed rest since last June and am not allowed to ride. Mad

There is a medication that they will start me on in July after another round of tests in June. The medication should stop the syndrome symptoms and I will regain some quality of life. Since I've been on bed rest for so long, and I lost 50 pounds in ten months, complete with muscle wasting, I am in terrible shape. I walk with a cane because I am so unsteady on my feet. Once the medication starts working, I will be able to start rebuilding some muscle and when I am strong enough I will be able to ride. Very Happy The medication will work for at least a year and hopefully longer.

I am okay mentally with all this. I am completely at peace with what ever is going to happen in the next couple years. Quality is much more important to me than quantity. I've made all my final arrangements and, believe it or not, life is good. My son and his girlfriend moved in with us in December to help me out. My husband works days and the kids work nights so there is usually someone with me all day. I actually welcome the hours I have alone! My son is a chef and has been fixing me all kinds of things that are very nutritious in small amounts and the weight loss is slowing down.

Please, understand that I am really okay with this. And I do understand that it is more difficult to watch someone be sick than it is for the person who is sick. I saw Twin's post about my surgery and really appreciate all the prayers.

hugs,
shebear



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Post  Doc Mon Mar 19, 2012 9:58 am

Glad you are back shebear!!!
I understand what you are going through and admire your courage. You will be in my prayers.
I will look forward to reading your posts for a long time. thumbup
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Post  jedishon Mon Mar 19, 2012 10:36 am

Yeah, we at least 2 more years of shebear wit. I am looking forward to that.
Welcome back. See you when you feel up to it.

Jerry
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Post  smokey2255 Tue Mar 20, 2012 2:37 pm

Glad to hear from you lady. Been too long. Prayers out for you. Keep us posted and for sure don't be a stranger.


See you out there
Smokey
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Post  Guest Tue Mar 20, 2012 6:14 pm

If I promise not to be a stranger, can I still be strange? Twisted Evil

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Post  smokey2255 Tue Mar 20, 2012 7:05 pm

shebear wrote:If I promise not to be a stranger, can I still be strange? Twisted Evil

Like you had to ask? We wouldn't recognize you if you weren't Very Happy


See you out there
Smokey
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Post  twin1300 Thu Mar 22, 2012 4:47 pm

shebear wrote:If I promise not to be a stranger, can I still be strange? Twisted Evil

We wouldn't have it any other way! Just glad you have come back home!



.....................bobby
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Post  LadyDraco Thu Mar 22, 2012 7:24 pm

Welcome back SheBear.... Angel
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Post  Guest Sun Apr 15, 2012 12:36 pm

Well, I'm not sure what to say at the moment. I went to an expert at Moffitt Cancer Center. While we were there, he said he wanted me to have a CT and an Octreoscan (definitive test for carcinoid functional tumors) done at Moffitt with their state of the art equipment. I had some blood work done and we came home. The next day, the doc called and said that he did not think I have cancer. But, he also said that the Octreoscan I had here was poor quality. So, I am not sure what is going on.

After a few days of thinking about it, I've decided that I am going to call him back and ask him to order the tests again. I don't trust anything that I have had done locally, including the surgeon. He simply does not have enough experience.

I just have this gut feeling that I do have it and, until I have definitive proof otherwise, I am just not buying his response. I'm pretty sure that getting the tests won't be a problem and my Mom sent me some money so we can go there again.

Until then: Shrug

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Post  jedishon Sun Apr 15, 2012 5:01 pm

The Lord can heal you in the blink of an eye. Might be time to ask him to relieve you of this burden. I am living proof that he does answer. My prayers are with you.

Jerry
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Post  Guest Sun Apr 15, 2012 5:43 pm

My thought is that yes, the Lord can heal you and he can also provide the peace to cope with things like this. I have such a profound sense of peace.

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Post  johnnie1 Sat Apr 21, 2012 8:44 am

Glad u made it back, sorry to hear about your cancer, will be praying for you and wishing u the best.
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Post  CaribCruiser Fri May 11, 2012 1:22 pm

Good to see you're posting again. Wish you all the luck and admire your strength.
Let's hope it's not cancer, but you do need to know, since being sick and having problems
without knowing what the cause is definitely unpleasant.
Hope you"ll know soon, get that second opinion.
I've been on and off my feet also the lat couple of years, also not knowing what causes
the problems. Not much choice in doctors over here, so still planning to go abroad and
also planning on riding my bike from Houma to Miami within a couple of months, so I'm
not giving up on riding yet.
Take care, like to see a lot of positive posts from you.
Robert.
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Post  Doc Fri Feb 01, 2013 12:22 pm

Being an Admin, I get email notifications of things...

This morning I got a notification that shebear deleted her account. Shrug
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Post  CaribCruiser Sat Feb 02, 2013 11:52 am

All I can say is that I hope for the best and that she will let us know or someone will let us know jow she is.
Wish you all the best and strenght shebear.
Robert.
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Post  Doc Sat Feb 02, 2013 6:01 pm

I have learned that she had a political/religious disagreement with another member from here
and I guess she decided to just pull up stakes...
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Post  Larry Simpson Sun Feb 03, 2013 2:54 pm

After reading her posts from years back and now I am thinking it is our loss sorry to see you leave Shebear we wish you only the best.
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Post  jedishon Sun Feb 03, 2013 3:13 pm

I will miss her.
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Post  twin1300 Mon Feb 04, 2013 4:14 pm

It is what it is sometimes guys! Things change! Sad



...................bobby
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Post  LadyDraco Wed Feb 06, 2013 7:03 am

Sad that SheBear pulled her Acct.
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