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Thread: Reflections on Cancer

  1. #1
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    Default Reflections on Cancer

    Ten years ago today I was in a doctor's office after challenging him to find out what was wrong with me after many unsuccessful prior visits and he sent me home with a jug to collect urine samples over 24 hours, something called a 5HIAA test. Never heard of that test, looked it up on the internet and it was to test for Carcinoid Cancer. Seriously? Nahhhh....was he reaching?. I could not possibly believe I might have something like that.

    Well, that started a journey the likes of which I had never been on before. I did hit positives on that test and after many more tests did indeed have cancer. There were dark days ahead, the low point was in early December 2005 when I was told I was Stage IV Terminal and nothing could be done about it - the consult oncology surgeon looked right across his desk at me and said I would be dead in 12 to 14 months. My wife Jennifer and I walked out of the doctor's office that day stunned. Rather than accept that diagnosis, I spend hours upon hours studying my disease through the power of the internet. I didn't like that oncology surgeon and quite frankly he irritated and annoyed me with his manner of quitting before we even got started. So I set myself out to study my disease. What is a doctor but someone who went to college for a few more years than I did? If they can learn it, so can I. It was time for a cram session and I spent hours and hours on line reading medical journals. Its amazing what you can learn if you push yourself to get educated on a topic. That research led me to Doc Michael Choti at Johns Hopkins and he saved my life in a difficult surgery in February 2006. What a turn-around.

    Being the 10-year anniversary of that nightmare, I reflect upon that experience and am amazed I was cured and remain so today. Statistically, I was an anomaly with this cancer - it always returns within five to seven years, except that mine did not. Dr. Choti said I was the only patient he has ever had where it did not recur. Talk about some heady stuff...

    Things I have taken away from that experience.

    1) Never give up. NEVER.

    2) Remember how hard a disease like this affects your spouse. They are in as much turmoil in it as you are, and we probably don't thank them enough for their steadfast support. THANK YOU JENNIFER. You were there every day for me and you never wavered. You were my rock.

    3) Your friends help pull you through. Small gestures, kind words, a few simple deeds help a lot.

    4) There are mediocre doctors, good doctors and then there are great doctors. When you are fighting for your life, seek out the great doctors. The good doctors - while well meaning - won't have the skill set needed to save your life. Get out of your comfort zone and go find the best in the world. You have one shot with a terminal disease to do it right, there are no do-overs or second chances.

    Many of us will get a life-threatening disease sometime during our life. While your story many not turn out the way mine did, you will never know unless you pull out all the stops. As Winston Churchill said "When you're going through Hell - Keep going".
    Duane Collie
    Straight answers from thirty-six years in the business.
    My Private Messages are Disabled - Please ask questions here in the forum.

  2. #2
    Join Date
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    Default Re: Reflections on Cancer

    It was George Carlin (or someone else) who said, "Half the Doctors you will meet graduated in the bottom half of their class." I think I've run into more than my share in the last few years.

  3. #3
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    Default Re: Reflections on Cancer

    I just had my 10th Anniversary of my surgery on Feb 16th, last week. I called up my surgeon that day, just to wish him well - he's no longer at Johns Hopkins but took a spot as Chief of Surgery at UT Southwestern where he is putting together a world class unit for oncology surgery.

    http://profiles.utsouthwestern.edu/p...ael-choti.html

    Of course I could not get to him on the phone, but I expected that. He's a very busy man and maybe he didn't even remember me. I just left a short message with his secretary and said there really wasn't any need to call me back, it was just 10 years ago that he saved my life and I wanted to mark the occasion. My cancer never came back after that surgery.

    Well, he not only called me back a few minutes later, but we chatted for half an hour. "Of course he remembered me" and we did guy-talk chat about cars, Texas vs Maryland, business and the medical profession, etc. I of course expressed continued gratitude for him saving my life when other doctors told me I was terminal. And he told me two things in return that I never expected to hear:

    * Apparently, I am the only person in the USA and maybe the world, who has never had a recurrence of this cancer (Stage IV Carcinoid). Not only does it always return in less than 5 years, but he told me that Hopkins published a medical journal that recurrence was 100%, and when he saw that he called them up and said they need to retract that, because he had the one patient with the cure, and gave them the details of my case.

    * He told me that I inspired him - can you imagine that? He said when I walked into his office in 2005 he saw a upbeat, positive fighter, who was willing to do whatever it took to take on the disease. And that I continued that post-surgery, never quitting the fight and reaching out to help others as well, and I never stopped asking questions about the disease. And my 'can-do' attitude made him establish a patient's advocate group at UT SW that he chairs up for those with cancer - where they can talk and give hope to those fighting the battle. He said until I came along, he never really saw the need to do that and I 'personalized' the cancer and showed him that people need more than just a clinical diagnosis.

    So needless to say, after what was a simple phone call that was just to say "thanks again", I was pretty reflective on all that he told me and felt like I just hit the Powerball lottery.
    Duane Collie
    Straight answers from thirty-six years in the business.
    My Private Messages are Disabled - Please ask questions here in the forum.

  4. #4
    Join Date
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    Default Re: Reflections on Cancer

    GOD has blessed you Duane ! He just loves people that appreciate life.
    Thank you for sharing and congratulations on hitting the Powerball of life !

  5. #5
    Pambi Guest

    Default Re: Reflections on Cancer

    Hi Duane,

    I read your story with great interest and empathy, as my 37 year old sister was diagnosed with Carcinoid syndrome (primary cancer was Neuroendocrine Cancer of the small bowel), in July, 2011. Terrible, terrible disease and she suffered profoundly, passing away in November, 2014, at 41 years of age. She left behind 3 young children. You have certainly beaten the odds and you have been very blessed. Thank you for sharing your deeply personal story and offering information and hope to others. God must have continuing plans for you, and perhaps sharing hope and determination is part of that plan. Before going through this journey with my beloved sister, I was not very religious. I feel I must briefly share with you (and forum members), my experience following my sister's passing. On the third day after my sister left this world, she spoke to me and told me to "remove my cloak of sorrow"; she was with my during her funeral telling me to be "calm". She has told me she is in heaven, where she is happy and whole and that there is a Divine Plan. She tells me that she is "always with me". There are so many other undeniable events that have happened through her (and of course God), that my life and perspective have been forever changed. I realize many will be skeptical and that's okay. I just felt the need to comment and to let others know that we are all souls, put here on Earth, to learn spiritual lessons, and that we are always surrounded by God and His Angels, who want to help us and guide us. All we have to do is ask. May God continue to bless you.

  6. #6
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    Default Re: Reflections on Cancer

    Yes, this is a terrible disease at the end stage. For those that don't know, it destroys the intestines and prevents your body from absorbing nutrients, so whatever you eat runs right through you. Constant and unrelenting diarrhea with 20 to 30 episodes per day, every day. People then wither away and either die of what is essentially starvation over many weeks or months, or the heart can no longer take it and fails. Dave Thomas of Wendy's and Steve Jobs of Apple both perished from Carcinoid (though its now called "Nets" cancer). When I read what this cancer does to people I was not willing to go without a fight, and committed 100% to the effort and read everything I could get my hands on about it. Being told I was terminal angered me greatly, and while most people would leave a doctor's office stunned by being told that - I left mad, because he told me I was going to die and we hadn't even started the battle. He had already quit on me. I don't cast my lot with quitters so I fired that surgeon (and boy, was he surprised by that). I needed a new guy. Doc Choti at Johns Hopkins and I were a fit like peas n' carrots. On the day of my surgery right before he wheeled me in he stopped by while I was on the gurney and said "With every cancer operation we don't know what we will come across until we are well into the procedure. If your cancer is complex and involved, how aggressive do you want me to be? I can ease off and you can have good quality of life for a few years, or I can continue with the chance you won't be the same afterwards." My answer was "Don't stop until you get it all, every bit. I'd rather be crippled than have that inside me". He knew I was going to say that, but had to make sure.

    About 10 weeks afterwards I began volunteering on Cancer Hotlines for Carcinoid newly diagnosed. I had learned so much about this disease I knew I could help people. Many I steered to Johns Hopkins and there were also many that would not commit to getting out of their comfort zone, or so feared surgery they could not stand the thought of it. To this day if someone contacts me about this disease I will gladly drop whatever I am doing and talk them through it for hours if need be.

    I am sorry for the loss of your sister, Pambi. I'm sure that has been hard on you and her kids. I will tell you what Doc Choti once said to me "We know the science of how to cure these cancers, what we lack is funding. When the money to do the research comes in you will see the cures for so many of these cancers". So when you see your elected politicians wanting to cut back funding to save money, especially to NIH, make sure you write them and tell them we need to support cancer research, its so important.
    Duane Collie
    Straight answers from thirty-six years in the business.
    My Private Messages are Disabled - Please ask questions here in the forum.

  7. #7
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    Default Re: Reflections on Cancer

    Man, Duane, I missed your original post on this. Congratulations on your 10 year anniversary and thank you for using your experience to help other people.

  8. #8
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    Default Re: Reflections on Cancer

    A friend of mine whom I have known for years send me the text (below) just yesterday about closing time at the store:

    He first noticed what he said felt like a popcorn kernel stuck in his throat around March 1. His doctor dismissed it and put him off repeatedly due to Covid. Finally near the first of August he became alarmed as he could barely swallow, then went into see a physician who did an immediate scan & biopsy and told him he had cancer. Five months passed from first noticing it.

    His chosen physicians have still not begun treatment as of August 23rd.

    Let this serve as a warning to be sure you don’t wait, don’t put things off, don’t be dissuaded by your doctor when you know something is wrong. Time is never on your side with cancer.

    This text from him to me yesterday evening...

    "Not good news. Cancer has spread to spine, lungs, liver - I’ve been in the hospital since Sunday night. Pain in my side/ribs was so acute I could not sleep and was panting. Pain was from pressure on lesions on liver. Discovered I have pneumonia as well from continued aspirating. Now on oxygen. And antibiotics for pneumonia. Saline drip. With no treatment, my prognosis is 2-4 months, perhaps 6. General surgery is scheduled to insert the feeding tube laparoscopically, because of the location of my stomach related to bowel and liver. Then chemo port install later. After port is in then they can start chemotherapy - new forms of immunotherapy - which may give me more time, or may not. It’s been a shock to us all, news you could never hope for. A good friend who former Priority Health Medical Director is working to arrange a video second opinion at UoM for me. We told both boys full details Tues night - they are both coming home and - silver lining - they can continue classes both teaching and attending, because it’s all online. Thanks for thinking of us - time will tell what the next weeks will bring. As I’ve been saying, it doesn’t look like there’s a light at the end of the tunnel - but hopefully we can make the tunnel a lot longer."
    Last edited by drcollie; 08-24-2020 at 12:07 AM.
    Duane Collie
    Straight answers from thirty-six years in the business.
    My Private Messages are Disabled - Please ask questions here in the forum.

  9. #9
    Join Date
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    Default Re: Reflections on Cancer

    Yes, time is life when it comes to cancer. Therapies have come a long way. The COVID thing, it can and will get in your way if you let it. But there are states where COVID is under control, everything is open and first class hospitals and cancer centers are running full throttle. You have to be determined and willing to fight, but it can be done. If you are willing to leave your immediate area, head to a place where they are not going to make you wait. New York, Connecticut, Mass. Yale, UMASS, Cornell Medical Center and others. You need a COVID map and then you need to research what is available in the areas that are open. But it takes a willingness to do whatever it takes. A car, a running busline and enough money for a ticket and a place to stay, or if you can afford it, plane fair. Not everyone has that kind of fight in them. I think you would have.

    I am sorry about your friend. I hope he can be helped with immunotherapy. Throat cancer is not pretty. The surgery can be life altering. Its really hard to watch someone care about go through it as well. I wish him well.

  10. #10
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    Default Re: Reflections on Cancer

    One thing that came up time and time again, when I was volunteering on the cancer help hot lines was how much people affected are not willing to go outside their comfort zones for treatment. At first I thought it an anomaly, but the more people called in the more of that I saw. I would estimate it's at least half, though I didn't really keep track. This was something I was never able to get my head around quite honestly. If this decision affects whether you live or die, why are you even thinking twice about it when you know the effective treatment is not local to you? To me, it's a no-brainer, you do what you have to do to stay alive and worry about paying for it later if you can get in. And if it's on the other side of the country, so what?

    My friend in this situation (above) contacted me August 2nd. One of my best friends locally has a sister who is a top radiology oncologist at Mayo Clinic in Rochester and he called her immediately, that same day. That evening she was on the phone with my cancer-afflicted friend listening to his situation and knew he was in trouble. She said if you can make the 9 hour drive or fly to Mayo, I will get you right in, tomorrow, and have a team lined up to get to you at once. She was very concerned. One problem, Mayo was out-of-network for his insurance and he could be facing big out-of-pocket expenses, so he elected not to go. That was 21 days ago and he has still not received any treatment for cancer where he lives in Michigan as of this writing.

    Cancer is like cooking popcorn in the microwave. At first, one kernel pops (that's our cancer cell). Then another, and three more. Very quickly the whole oven is popping like mad, and that's the cancer spreading. The time to deal with the cancer is at the first pop or two, before it really gets going.

    Many of my cancer help-line callers died. One woman said she would only take a pill, she was terrified of surgery (as was Steve Jobs of Apple). She didn't make it. Another man from Long Island thought the drive to Johns Hopkins was too far from Long Island (6 hours) after I had him all set up with my surgeon. He had his procedure done locally by a hack who promised him a minimally invasive procedure and he never made it out of the hospital. Several had no medical insurance whatsoever and if course, they were doomed. The list goes on and on....

    As I am fond of saying "There are no do-overs with cancer. You have one shot to get it right." I wish my Michigan friend would have called me for advice back in March.

    BTW, you nurses that work in Oncology wards - hats off to you. I don't know how you do it. People sick and dying all around you, quiet desperation on the floor and yet you manage to soldier through it all every day with dedication and a smile, and give your patients hope when you can, and comfort when you cannot. It takes a special person to work the cancer wards.
    Last edited by drcollie; 08-24-2020 at 08:15 AM.
    Duane Collie
    Straight answers from thirty-six years in the business.
    My Private Messages are Disabled - Please ask questions here in the forum.

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