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Thread: You don't have to be a hero.

  1. #1
    Newbie New User
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    You don't have to be a hero.

    While I have a lot I want to say, I want to also keep it brief. It's been 18 years since I was diagnosed with Primary Lymphoma Of the Bone (right hip). I was 26 years old. I completed chemotherapy (6 months worth or so), radiation and used crutches for over a year. Lots of ups and downs during those days. Surviving was harder than the treatment. Life keeps moving on. I was lucky to have my wonderful mother to help take care of me. It was a serious speed bump in life. Since then, I have seen many folks who have had different experiences with their treatments for cancer. A lot not so positive. But don't give up hope.
    I lost my wonderful mother to lung cancer last month and my father is waiting for his lung cancer diagnoses right now. At this moment it's uncertain what is going to happen for him. But for those out there who read this. I want to share with you that being told you have cancer or a family member has cancer does not mean it's the end. Doctors are wrong sometimes. I was told they would have to take out my pelvis and remove my leg the first day it was discovered. You can survive. I have for 18 years. And to do this you don't have to be superman/superwomen. The only thing super about me is my waste line. Being a hero is not required. Anyone can do this it happens everyday. Good luck to you all and lets hope a cure for this awful sickness is not far away.

  2. #2
    Quote Originally Posted by Willawoo View Post
    While I have a lot I want to say, I want to also keep it brief. It's been 18 years since I was diagnosed with Primary Lymphoma Of the Bone (right hip). I was 26 years old. I completed chemotherapy (6 months worth or so), radiation and used crutches for over a year. Lots of ups and downs during those days. Surviving was harder than the treatment. Life keeps moving on. I was lucky to have my wonderful mother to help take care of me. It was a serious speed bump in life. Since then, I have seen many folks who have had different experiences with their treatments for cancer. A lot not so positive. But don't give up hope.
    I lost my wonderful mother to lung cancer last month and my father is waiting for his lung cancer diagnoses right now. At this moment it's uncertain what is going to happen for him. But for those out there who read this. I want to share with you that being told you have cancer or a family member has cancer does not mean it's the end. Doctors are wrong sometimes. I was told they would have to take out my pelvis and remove my leg the first day it was discovered. You can survive. I have for 18 years. And to do this you don't have to be superman/superwomen. The only thing super about me is my waste line. Being a hero is not required. Anyone can do this it happens everyday. Good luck to you all and lets hope a cure for this awful sickness is not far away.
    Thank You for your post Willawoo!! I so love success stories.I am glad I did some more reading today. My Husband is a tall, strong and such a good hard working Man, Father, Grand Father, Husband and my Best Friend. I can't begin to imagine his thoughts about all that has occurred in July with his new diagnosis.

    Stubborn indeed as well. He will not admit pain until it is extreme. And extreme for him would put the average person on their knees half way there. But your post has brought to my attention that it may not be admitting to weakness but fear of failing others. Worrying others, having to have others do for him. Not being their Hero.

    He is my Gentle Giant. Now don't let that mislead you, he is an outspoken man. Quick tempered, and has road rage . But under all that tough exterior, he is a good and big hearted fellow!! I needed to read this today. So to show more compassion to his what I think he thinks is admitting weakness. His lacking to speak up of pain or sadness or being afraid of his future. Letting us down.

    Many Prayers for your continued success

    Alisa
    Wife/Caregiver of Male 54
    July 1st ER visit. Sent straight away to Oncologist July 3rd Liver Biopsy July 5th PET Scan,mass thought to be causing blockage in Colon.4-5 Liver masses. One large in dangerous location.Lymph nodes effected.All cancer in close area.July 9th Colonoscopy.No mass in the Colon. Biopsies 2 small polyps.Colon is clear!!!July 12th Laparoscopy.Liver biopsy repeated.2 visible lesions biopsied again.Scraped exterior of colon at mass for tissue biopsy.Removed Umbilical Hernia
    July 17th Power-Port implanted.Chemotherapy July 29.Avastin,5Fluorouracil,Irinotecan,Oxaliplatin,Le ucovorin.7-29 Avastin sequential Arm B FOLFOXIRI began. Oxaliplatin and Irinotecan to be alternated each month.Infusion Pump to be worn 46 hours following in office infusions.CT Scan Sept.20th showed no change.Ileostomy Oct 2,2013.Return to work Oct.21.Folofoxiri began again Oct.30th. BRAF positive! CT Scan Nov.15. Heaven bound Nov.30th, 2013

  3. #3
    Newbie Regular User
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    Oct 2013
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    11
    Never underestimate the power of positive thinking (whether yourself or friends/loved ones) and prayer. In my journey, I've met people who think prayer is useless. I don't get that, but to each his own.

    I was poisoned with a witches' brew of chemicals that included several organophosphates (nerve gas is a highly refined organophosphate) by an unlicensed exterminator when I was a junior in college living in a dorm. I ended up in the ER multiple times; the last time I went into shock with a heart rate of 30, respiration rate of 2 and shallow, a core temp of 90 degrees F, and sustained a BP of 270/190 for several hours, taken on more than one cuff by more than one person. I should have died. My parents were told that if I left the hospital outside of a body bag, they should take me home and keep me there, so long as no insecticides were used in the house. I was not expected to live. God had other ideas.

    I had thyroid follicular carcinoma 8 years later. Perhaps related to chemicals, perhaps not. No family history and I was only 28 with perfectly normal blood work. I had a lump in the throat that tripled in size visually in 2 weeks. Uptake scan revealed it was indeed cancer.

    When 30, I went in for yearly checkup and mentioned to my surgeon that my dad was told to have his children (only me -- no siblings) checked for familial polyposis by the time they were 30 or when symptoms appeared, whichever came first. I had no symptoms, but got an air contrast barium study (not fun) and when that was inconclusive, I had a colonoscopy. Found several hundred polyps ranging from "barely there" to 12 mm. Big ones all precancerous and cancer definitively found during surgery two months later. Amazing to think how long that's been now. I lost all the large intestine and had an internal J-pouch with ileal-anal pull through surgery. Not as good as Mother Nature, but better than an ileostomy bag which my dad had.

    Two years later, I went in for an abdominal mass. Ultrasound, CT and MRI all inconclusive. Ended up having surgery on the Monday following my 33rd birthday. Was supposed to remove the mass, an incidental adrenal nodule and fix a post-op hernia. The morning after surgery, my surgeon gave me a birthday present: the mass was an extremely rare mesenteric fibromatosis and had not been touched. Neither had the adrenal nodule. The prognosis? "Barring Divine intervention, you will not likely live to see Christmas, much less your next birthday." I asked about the adrenal thing. I was told that I would not live long enough for it to be an issue. (Yeah, right! ) My surgeon then said that if any patient he'd ever had would beat the odds, it would be me. I admit it through me for a major loop. I still remember well the day my reality check bounced. It was a very black day.

    Here I am, several years later. I've had cancer yet again and I had a gall bladder go bye-bye. Still have the mesenteric fibromatosis. It has now encompassed 100% of the gut I have left and should I be one of the "lucky" patients with Gardner's syndrome that end up with cancer of the stomach, pancreas or ampulla of Vater in the duodenum, I'm screwed because surgical intervention is not possible due to lack of free gut to hook back up to the parts after the cancer is removed.

    I was diagnosed with late stage III adrenal cortical carcinoma in April of this year. Due to the nature of the beast, the fact that it starved a kidney of sufficient blood supply, the fact that it had invaded the inferior vena cava and the lymph system, and the fact that I am at very high risk of micro metastases, the statistics indicate that my life expectancy was then probably less than 15 months, or less than a year or so at this point.

    In the immortal words of Garth Brooks, I am much too young to feel this damn old. But, statistics aside, I will be on the green side of the grass just as long as our Father in Heaven intends for me to be here. Doctors, however much they know, don't know everything.

    I like to think of life this way: At birth, each baby is given a personal hourglass. In that hourglass is a finite number of grains of sand. Some of those hourglasses contain a lot of sand, some not so much. No mortal being can alter the number of grains of sand in that hourglass. No one can add to the grains nor take away from them. What each mortal CAN do, however, is alter the rate at which those grains of sand fall. Individual choices, heeding or not heeding advice of health care providers, etc., all affect the rate at which those grains of sand fall. Doctors cannot tell any patient how many grains of sand are still in that person's individual hourglass. By all rights, I should have run out of sand a long time ago. But I'm still here. For how long, I know not, nor does anyone else.

    So, be prepared to face one's final curtain call. Plan your funeral -- it was a great healer for me, believe it or not. It was a hoot to go to funeral homes and/or places that engraved tombstones/memorial markers and ask about what was available. Invariably, I'd get asked in a somber voice about the dearly departed and I'd laugh when I saw their reactions to "it's me". But I have a weird sense of humor. BTW, I saw some very, very ugly caskets out there. That said, don't live your life as though you are made of spun glass and will shatter if someone blows on you too hard. Don't ignore the eventuality of it all, but don't dwell on it, either.

    We each will leave this life with regrets -- things left unsaid, things left undone, a woulda, coulda, wish I'd done list, things done, things said. The object of the game, as it were, is to have that list be as short as possible.

 

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