INSOMNIACS place to talk in the wee hours

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited January 2015

    Cami,

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2015

    Sorry Cami, I know you were all close. Hugs

     

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  • Enerva
    Enerva Member Posts: 3,162
    edited January 2015

    Cami sorry :( hope you are ok losing a sibling is very hard :(

    Love youuuuu

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited January 2015

    Cami, so sorry to hear this

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  • camillegal
    camillegal Member Posts: 16,882
    edited January 2015

    Thanks everyone, it did happen fast--He was in Florida, golfing in December feeling fine and then he was DX with cancer all thru his body. He was the 2nd oldest and dearly loved by us and so many people he touched in life He was home here. we were all glad he was here, but of course nothing we could do for him. We're having a hard time with this, also most of his close friends were well known  Drs. why in the hell did he wait so long- But there is stil no answer and never will be. He was getting married soon and she is wonderful--he was so happy.that I think he just ignored signs--cuz when he did have a couple of operstions he'd go right away and had surgery the next day--they took such care of him. That's my theory anyway. He did have a beautiful life, wonderfult wife (died a few yrs back) great children who gave him wonderfl GC  and his career was exactly as he planned--He retired from a Justice of the Appalete (sp) court and he traveled all over, skied in Austria and just enjoyed life too.AND he took care of himself ate well, excercised , didn't smoke and there is no way I think u can hide from cancer and my mom was another one who did all the right things and she had it too.--I'm sorry for the rant but it just spilled out. I'm just so upset with effin cancer. This disease has been around a very long time and u'd think there would be a better handle on this damn thing. Well this is how I feel. I'm sorry again this post was all about me--but then again most of them are.

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  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited January 2015

    Go ahead Cami, dump all you want to. You know we are here to listen. Get it all out, it may help you.

    Xxoo

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited January 2015

    Cami- you can rant all you want with all that is going on. A sudden death is always shocking to everyone. I am glad your brother did not suffer a long time, but so hard for all of you that remain.

    I can tell he was very loved by all of you. That he had a wonderful career, family, that he traveled and enjoyed himself. A life well lived is something to admire. I hope you find ways to mourn his loss as well as celebrate the person he was.

    I don't blame you for being upset with the f-in cancer either. It is a horrible disease that is often very silent until it's too late. We do the best we can to take care of ourselves.

    You try to rest up dear, as this next week will be a busy one for your family. We are here if you need to talk. As you know, we are great listeners!


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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited January 2015

    We are all hugging you little Cammers.... And we are always here.... He was blessed to have your whole family... He is walking with the Angels now.... xoxoxo

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  • susan3
    susan3 Member Posts: 3,728
    edited January 2015

    sorry to hear cami. Praying for you and your family...hugs

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  • Smaarty
    Smaarty Member Posts: 2,951
    edited January 2015

    cami, sorry for your loss, seems like a brother anyone would wish for.

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  • Wren44
    Wren44 Member Posts: 8,585
    edited January 2015

    Cami, It's so hard to lose a brother. Hugs. And don't worry about ranting about Fing cancer. It deserves all the ranting it can get.

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  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited January 2015

    Cami - All I can say is I'm sorry for losing your brother. Jazzy said it so well. A life well lived. (((HUGS))) Rant all you want. That's what we're here for.

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  • dunesleeper
    dunesleeper Member Posts: 2,060
    edited January 2015

    Cami, my sincere condolences about the physical loss of your brother. It reminds me to call my own.

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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited January 2015

    Morning gals.... Sassy, what did you find out? What about the tests?

    Cammi... I know... We just think of so many things when we are thinking about someone we have just lost. And we wish we could have done this, or said that, or maybe been there a little more, but it's all okay.........Your Brother lived in your heart, and you in his, and no matter what, it will always be that way.

    That's right Dunes... I'm going to call mine too! xoxoxo

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2015

    Chevy Good Morning :) It'll be a while. I have to get a new patient appointment . No clue how long that will take., but it's in process. There's two other referrals for body parts misbehaving. I'll be on the train for awhile. I'm okay honest. Just another one to deal with. It's early. (I hope LOL). Usually the first sign of bladder cancer is blood in the urine. I don't have that. The urine was a monitoring urine, I have every year b/c of a chemo screw up and then the RAI-131(radioactive iodine). But my research did me well in the sense that when the chemo scerw up happened, my research said "urine for cytology for life". Docs poopooed me. St PCP will do anything I want. So the downside is, if there was no monitoring and it just would show up later.

    Each of my cancers have been early, and the brain tumor. The brain tumor was benign but growing. They can stay benign, or cross the line to malignant. Either way out it went too:)

    When I saw the Mo early Jan. the urine wasn't back yet. We got all the other referrals and tests set up. I said I was due for another cancer based on history of last 6 years. He said I was just being paranoid. Showed him to listen.

    I'm going to ask for some genetic testing. I fit Cowdens disease to a tee. BC, Thyroid, Bladder. There's also a thing called P53. I asked for it sometime ago --got poopooed. Don't think so this time.

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited January 2015

    Sas- I do think you are a good candidate for genetics testing. My BS told me there are all these new generations of tests that include bc and other types of cancers they are starting to look at now. Testing beyond the BRACA genes most are familiar with.

    That being said, they are hard to get authorized and approved, but with your history, I would think it would not be as problematic.

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  • dutchiris
    dutchiris Member Posts: 855
    edited January 2015

    I'm so sorry Cami. I'm with the others in saying rant away.

    Sas, I like Patti's advice, lol. I'm also hoping the new tests show no cancer.

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  • tangandchris
    tangandchris Member Posts: 1,855
    edited January 2015

    Cami I'm very sorry for your loss ((hugs))

    xxoo

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2015

    mags, I think science has done a disservice to woman with stressing the BRac' s. The body is to complex.

    In 2009 I had genetic counseling after BRac' s negative. Paternal grandmother side loaded with cancers 23/53 adults with cancer. 12/21woman have cancer. Nine of those BC. That was six years ago. Oh well they will listen now.

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  • magdalene51
    magdalene51 Member Posts: 2,214
    edited January 2015

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    Cami, ((((((((((hugs)))))))))))))

    Sas, fingers crossed.

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited January 2015

    Love it Mags. Hope you are doing well today?

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited January 2015

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  • Wren44
    Wren44 Member Posts: 8,585
    edited January 2015

    Judging by my scale the past 2 days, I'm rapidly becoming a cat. Not looking forward to licking fur tho.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015
    Wren, that would pose quite an interesting dilemma if you were to become a cat. Would you try to catch yourself or just sit and watch your activities from a distance?

    Cami, I am so very sorry for your loss. My thoughts are with you and your family. and please do rant away without apologies.

    Sassy, hope results are back soon and are helpful. And even more so that they'll start listening to you and that you'll get the appropriate testing at last.

    We have a sunny, mild day here so I'm going to make use of it and get outdoors to my very bedraggled garden.


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  • Chevyboy
    Chevyboy Member Posts: 10,786
    edited January 2015

    Hopeful, I would LOVE to get out in my garden, and I can in about 2 or 3 months...Ha!

    I turned our bedroom around today.... moved the bed, and dresser, and it looks a lot bigger! It stays a lot cleaner, and is easier to move things around with the Laminate floors!

    And I'm making "Noodleburgers." It's just ground beef, browned, then add a can of chopped tomatoes, 1 can of sauce, and throw in chopped celery and onion, cook it for awhile with a can of water....... then mix it with your favorite cooked pasta.... My Mom used to make this for our family when I was a kid.... and we always loved it.


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    Kind of looks like this!

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    Or this one.... I'm using Farfelle tonight....

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2015

    To all when I say my first AND only chemo was screwed up. Sheesh every step in the process was screwed up. Below is from the 2D6 thread. describing the first two steps. Below the///////////// describes how the nurses screwed up and why I may have bladder cancer. It was such a cluster*k for the whole admission. I refused the other three adjuvant chemo's. At discharge I asked the MO why everything happened. He shrugged his shoulders. I said is there anyone willing to figure it out. He was silent. I said "then I'm not willing to trde off my organs when obviously somethings wrong with the treatment.

    Written on Nov. 16th 2014  on the 2D6 thread.

    "Ironically, I have concluded that I am alive today because my genetics weren't known. Based on pathology, I had a very aggressive cancer. I was given the standard dose. It's pathway was through 3A4. For adjuvant therapy, my dose should have been reduced. This is based on my genetics as a intermediate metabolizer through that path. I had what's referred to as a relative overdose. Not enough to kill me, but almost did. Not the exact definition, but close enough. Then a second thing happened. The Hospitalist hung the wrong IV fluids when I went in to the hospital with a WBC of 1.5,  Neuts of  0.5, and a temp 104.8. He should have hung Normal Saline 0.9%. Instead he hung 0.45% , also, referred to as half normal saline. That put me into Acute Renal Failure(ACR).

    Relative overdose + ACR = Circulating elevated drug level for longer than expected because of no kidney filtration.  The ACR was reversed by the proper fluids after the nephrologist evaluated the situation.

    Important concept. Actually, if there was a decent science researcher reading this, it could be an avenue of research.

    The problem is ACR is not always reversible. Thank God, mine did not become permanent Chronic Renal Failure(CHR), otherwise I'd be on dialysis.

    Baker, I believe everyone should have their genetics done, but again the irony of  the lack of genetics and the doc screw up, are likely why I'm coming up to my 6th cancerversary in Jan."

    ///////////////

    Along with the above screw up, the nurses screwed up by not doing a simple "Intake and Output" referred to as I & O. If that had been done they would have known my output was not balanced to intake. I told them what was going in (100cc/hr) wasn't coming out. The urine was overflow type----spraying all over and running down the sides in trickle flow. They asked if I wanted to be cathed---Yes!. 950cc( normal void stimulus 125cc--Cross your legs @ 250cc). My drugs dulled the need to go.  Cath in  for the next several days.

    What that meant is the Cytoxan and taxotere sat in the bladder for longer then it should have. Cytoxan overexposure can lead to bladder cancer. DUH.

    BE your own advocate. Everyone poopooed me about the yearly urine for cytology exam. Except PCP. Now if it ends up a false positive Yay. I still need a urine for cytology for life.

    You may want to consider adding it to your list of yearlies based on your chemo's.

    Then I got to add Rai-131 to the mix in 2014. Poor bladder didn't have a chance.

    2D6 thread, fun for those that want to see where I volunteer

    https://community.breastcancer.org/forum/73/topic/798301?page=7#post_4284104

    BBL Love you guys --thanks you keep me sane

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2015


    Chevy, have you ever moved furniture then sat where it wasn't?

    Hopeful so happy you have joined us :)  everyone here keeps me sane and humorous. Not my humor. Chevy & Cami. They are the Rowan&Martin, Martin & Lewis, Dickie &Tom, Abbott &Costello, Laurel & Hardy,   Rossannadana& Jane. Cami is grieving right now and hasn't been feeling well for a while. But if you go back  to page 180 and just look for those two posts to each other, you will see that if they had paired up early in life, they be right up there with the others.

    Jazzy, I was so hopeful the thyroid meds would take off the weight. They tried, then I noticed the fight. I have this theory about obesity and cancer. Most studies say obesity leads to cancer. I have two documented cancers where there was a rapid weight gain before each. It was a "what's happening?".  My Hypothesis: Does a weight gain precede a cancer". It's not been studied. I'll press my BigWig Thyroid doc at Moffitt next visit. There always looking for something to study. I knew something was happening when there was such a weight fight. That and .10cents won't buy a cuppa coffee. LOL But it'll be fun to offer a challenge for study.

    Jwooooooooooooooohoooooooooooo where are you?

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  • sas-schatzi
    sas-schatzi Member Posts: 19,603
    edited January 2015


    Mags beautiful thought and beautiful owl Thank you Hugs

    PattyP saw you on W&F's for the first time. Should have put that on the pain list treatment. Laugh allot. :)

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  • Jazzygirl
    Jazzygirl Member Posts: 12,533
    edited January 2015

    Sas- I have read a lot about weight and cancer, and of course, the belief is that the extra fat results in excess estrogen, which I get. But thin women get cancer too, I have known a few of them that have had bc. And I have read more in the past year about sugar and cancer. I gave up sugar 18 months ago after my A1C hit the borderline number. I know sugar helps nothing.

    Although I have struggled with weight most of my life, I did well for a long time, but put on a bunch in my 40s with some stressful things that went on with my family, work, etc. I got diagnosed at age 52. I know many women put on weight in the pre-menopause and menpause years. And we know this is women most of the cancer is diagnosed.

    I have been working with a personal trainer for months and got my internal fat way down and now working on the rest. I went for a solid 2 hour work out today.

    I hope you get some better knews about the bladder situation. You certainly need a break.

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  • Wren44
    Wren44 Member Posts: 8,585
    edited January 2015

    I just read an article about a trainer who thinks that belly fat is caused by stress. To lose belly fat a person needs to learn to let go of stress by whatever means works for them. Could be meditation or mild yoga or just being in a special spot to decompress. It's certainly an interesting idea. She's totally into the idea of lots of exercise, but it should be balanced with down time.

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