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Thread: Three Years & Counting on the Cancer Front

  1. #1
    Join Date
    Jul 2008
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    Alexandria VA
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    Default Three Years & Counting on the Cancer Front

    On February 17th, it will be my 3rd anniversary of the day Dr. Michael Choti of Johns Hopkins saved my life. I still have two more years to go before Doc C. tells me I'm can say i'm cancer free, but I'm past the half-way point now and very confident that I'll see no more of it.

    It's a rough thing to recover from a Stage 4 cancer, I kid you not. It takes a total commitment and willingness to do ANYTHING to battle it and have a chance to come out alive on the other end. There is pain. There is fatigue. There is frustration and fear and there comes a time when you want to go to just one medical appointment without getting something stuck in you for blood or tissue samples and running cameras up your bottom.

    I think about cancer every single day. Somedays its to marvel at how I'm still here, and how can I ever repay Dr. Choti for what he did for me when other doctors said I was doomed. Other days its the stitch in my right side from the surgical site where they removed the majority of my liver and a good chunk of my small intestine, and I'm reminded that I can't load those sofas in the trucks quite as gracefully as I used to be able to do.

    Somedays if you call my store and get the voice mail, its because I'm talking to someone on the other line who is newly diagnosed with cancer and terrified. I never put them on HOLD, and can spend up to an hour on the phone with them. I do that as a cancer hotline advocate for a couple of different non-profit cancer organizations and find it hugely rewarding, especially when they call back six months later and tell me I was instrumental in them getting the right treatment.

    I'm a believer that YOU must take charge of your own medical destiny, and get educated when you are battling a mortal disease. For those that have followed this thread this far, you may want to read about Karen P., who is an email friend of mine and another one saved by Doc C's Most Excellent Treatment Protocol. Her story and mine are much alike, and the New York Times did an article on her journey with cancer that I think is well worth reading:

    http://www.iht.com/articles/2007/07/...cer.php?page=1
    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
    dr56 Guest

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    Hi Duane,

    How heart-warming to hear of how you fought and won the battle! My very best to you now and in the future. I believe you have conquered it going beyond the "halfway mark" as they say! I will refer your link to others who may be very interested. I agree that you must be a strong self-advocate when you have been dealt something of such great magnitude.

    It's amazing.......you never know where "leather furniture shopping" may lead you. LOL! I love technology!

    Celebrate the day well........it is also the day my mother celebrates her 84th birthday.........a great day at that!

    Diane

  3. #3
    dwainw Guest

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    Congratulations on 3 years! May God multiply that many times over for you.

    I've had friends in the medical profession tell me the same thing about being dilligent in making sure you are getting the proper care for yourself. I can only imagine that one of the most difficult things for a doctor to do would be to stay passionate about the care of every patient. That is reason #1 that I'm not a doctor.

    And kudos for being part of the support network. You are obviously made to offer a helping hand.

  4. #4
    soster Guest

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    Keep on rockin!

  5. #5
    Join Date
    Aug 2008
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    Lakewood Ranch, Florida
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    Default

    Duane.... You have learned a great life lesson. We all must follow your advise and take charge. We have somehow become a people who too easily look to others or our government rather than ourselves to be responsible for our lives.
    Thank you for sharing with us your life, your battle with cancer, your knowledge and wisdom about taking personal responsibility. You have become one of my heroes. You should take your family and do something special with them all on the 17th. to celebrate life.

    Congratulations on your victory my friend
    Larry

  6. #6
    Join Date
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    Alexandria VA
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    Thanks everyone! I'm not out of the woods yet, but I'm pretty confident that I'll be OK, and if the cancer returns I'll call up my good friend Dr. Choti and as he told me "We'll do it all again and get you fixed up".

    I'm a huge advocate for taking charge of one's own medical destiny now. But, I didn't use to be. I was never sick, and would go ten years at a time before seeing a doctor. When the cancer struck, I figured that most every doctor was qualified equally, and was very trusting. That changed early on during my testing....

    I had to have a liver biopsy, where they put a sonogram-guided needle device into your liver and snap off a piece of the tumor so they can type it and confirm it. You have to be awake when this is done so you can hold your breath and not move when they are doing this procedure, and they take two samples five minutes apart. And lemme tell ya, its a lot more fun going to Disney World than doing this...

    Though I didn't know it at the time, my particular rare cancer, called Carcinoid Cancer, does some funky things when it sets up shop in a person's liver. The tumors take over the natural production of the hormone Serotonin in your body, and they can increase its flow through the body. These tumors don't like to be disturbed, so if they are touched, they flood the body with massive amount of Serotonin, which makes a person's blood pressure bottom out. If your BP doesn't come back up, you die right then and there.

    There is one very expensive drug made by Novartis called Sandostatin which blocks the flooding of this hormone and is mandatory for treating Carcinoid patients. It's $ 5,000 a dose and has to be pre-ordered from Novartis in advance - its not kept in a hospital pharmacy.

    Well, you can guess what happened next. Right after the liver biopsy, I was in the recovery room and my wife was talking to me and I passed out. My blood pressure bottomed out as I slumped over on the gurney. The medical staff had no idea what was happening but it was a Seratonin flood from the disturbed tumors. My wife told me I was blacked out for about four minutes. At a place where they know what they are doing, they can give a patient a 'rescue shot" of Sandostatin if they have it on hand and the knowledge to use it. Of course, there was none at where a I was, nor the smarts of anyone to use it if there had been. I eventually came to on my own as my BP came back up after the attack. The doctor at Innova Fairfax Hospital who did the biopsy told me that it was probably because I had not eaten since the previous evening and gave me some orange juice to drink. He was clueless.

    I returned home and spent hours researching my cancer on the internet, and discovered that they had made a huge medical faux pas by not having me on a Sandostatin I.V. drip during the biopsy procedure, and when I called that doctor's office they were not interested in hearing my opinions of what I had found out.

    That's when I became my own medical advocate, and got hard on my assigned physicians. I could right a book on my cancer experiences and how I challenged the medical system every step of the way and their treatment protocols until I finally got to Johns Hopkins where they know what they're doing. I was not real popular as a patient after that, but I would never again let them do an invasive procedure on my without having a Sandostatin does on hand and that caused some sparks because of the cost of the medicine.

    One day I'll tell you the story about how I fired my (HMO-assigned) cancer surgeon.
    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
    puhmuckel Guest

    Default Way to go!

    As an ICU RN, I agree with you !00%. You have actively participate in your care and you've got to keep them on their toes. With recent cut backs and more and more pressure put on MD's and RN's at the hospital level, things are likely not to improve (as far as I can see). Administration and policies are at fault most of the time. I am quitting my (good paying) job because paperwork is now more important than patient care. I won't have a problem finding a job. less stressful in my field.

  8. #8
    artielange Guest

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    Duane,

    I really admire what you do to educate and assist newly diagnosed cancer patients as there is nothing so much that feels like a death sentence as learning that you have cancer. Remember the way that people would look at you when they heard about your diagnosis? I don't ever want to see that pity in peoples faces again. When I was diagnosed during a biopsy that was at 9:05 Tuesday morning, September 11, 2001, my life was totally changed and due to the fact that my sisters friend is one of the top cancer researchers in the country, he was able to direct me to the kindest and most compassionate cancer doctor (Shout out to Timothy Carlos M.D., now in Seattle, WA).

    I also got a fighting attitude and confronted surgery, chemotherapy and radiation for the next ten months. The countless followup PET scans, CAT scans, MRIs and myriad of blood work went from every 3 months to every 6 months to once a year to (most terrifying) being released from my cancer doc, save for a once a year checkup/bloodwork.

    You know as well as I that there are milestone dates and yesterday was one of them for you. I wish I had known when we were on the phone so that I could congratulate you for getting to this point and for helping so many other people! Like you, I think of cancer every single day but I have noticed that in the past few months I don't think of it as it pertains to me personally as much. That feels like a good step back.

    Best wishes to you in the future.

    Judy
    Last edited by artielange; 02-18-2009 at 11:08 PM.

  9. #9
    Join Date
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    Its a bumpy road to travel, isn't it Judy? What kind of cancer did you battle? I can't possibly imagine a worse time for you to get your diagnosis. The morning of the 911 disasters....the whole world focused on that event.

    I vividly remember the absolute worst time was when being first diagnosed. There's confusion, panic, and terror. Typically its delivered by a nurse who says after that last test or scan, "the results were positive, we need to get you in as soon as you can to see the doctor, can you come in tomorrow?" And then that's it....you're left there staring into the phone. Life just went upside down on you.

    For me, there was a huge financial hit. Being a Mom n' Pop store, I had no one to take over for me and there is no sick leave when you own your own small business. I was running my Freightliner on the last trip from New England two days before my surgery. Six days out for surgery then back in the store working the next day after being released from Johns Hopkins. I could only work two hours that first day before I was exhausted, but I went in every day thereafter to do the things that were critical. My elderly parents store-sat for me as much as they could, but they could barely run the cash register.

    I had found precious little information on Carcinoid Cancer. Even the doctors didn't know much about it at the basic level. My primary care physician said he remembered reading about it in Med school, but had never seen a case. My Oncologist freely admitted he had never had a instance of it, either. Not very reassuring!

    I volunteer for The Caring For Carcinoid Foundation as patient advisor as well as the R.H. Bloch Cancer Foundation as their carcinoid 'go-to' guy. When newly diagnosed people call in I usually spend quite a bit of time with them on the phone and for many I will talk to them ten or twelve times as they go through their cancer journey over a period of weeks and months. I can tell pretty quickly those that want to fight it tooth and nail, and those who really don't want to invest the effort as much and just want a sympathetic ear to talk to. In the past three years I've helped at least nine people who were getting the wrong treatment to redirect and get to the proper experts. Its very rewarding to make that kind of difference, and if I had my life to live over I'd be in the field of Oncology rather than selling furniture - but I'm too old for Med School now.

    It's a strange trip to be a late stage cancer survivor. I vividly recall my first oncology surgeon looking me in the eye and telling my wife and me to get my affairs in order, I'd be dead in 12 to 24 months even after he operated, and there was no one who could save me. I think he got a sadistic pleasure out of saying that, and I've always wanted to stop back by there three years later and pop my head in to see if he wants to go to Panera for lunch. I don't believe in doctors that give death timelines any more. The best ones never do in my experience.

    I tend to ramble on this topic once I get started <laughing> I really need to write that book one day.
    Duane Collie
    Straight answers from thirty-six years in the business.
    My Private Messages are Disabled - Please ask questions here in the forum.

  10. #10
    artielange Guest

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    Ah, the "get your affairs in order" speech. My father was given that very speech when diagnosed with malignant melanoma in 1982 and he is still here with us, even after a battle with Hodgkins Lymphoma 4 years ago.

    I had a very aggressive form of Non Hodgkins Lymphoma that was diagnosed through a newly developed heart murmur. Off I went for the required chest xray that revealed a tumor as large as my heart sitting on top of my heart with massive involvement with my heart valves. That is one shocking xray to look at. In fact I had gone to the local hospital to sign out the xrays for the next doctor to review and I will never, ever forget the feeling of sitting in my car in the hospital parking lot, pulling out that xray and the complete life-draining feeling of viewing that huge tumor. I said to myself, "This is not good" and I went home and started finding where I needed to be for my diagnosis and treatment. Thankfully I live in Pittsburgh where we have great cancer care available at the Pittsburgh Cancer Institute (and now the Hillman Cancer Center) but I wouldn't hesitate to travel anywhere that the best docs for my cancer were.

    I really admire what you do through your volunteer work. And knowing what a great story teller you are, you should get to work on that book!

    Judy

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