The Road To Reversal Is A Dead End

Have you ever experienced one of  Those Moments? You know, the ones where you realize without a doubt that what you want is out of your reach? That happened to me today at my appointment with The Best Doctor In The Universe. For simplicity’s sake, let me just call him TWOO, short for TheWizard Of Oz. Why? Because, in That Moment when TWOO was telling me the reasons why I can not have the reversal surgery done, my brain started playing a loop of the song that Dorothy, the Lion, The Scarecrow, and the Tinman sang as they danced down the Yellow Brick Road towards Oz:

“We’re off to see the Wizard, the wonderful Wizard Of Oz! We’re off to see the Wizard, because , because, because, because, because, because of the wonderful things he does!”

While all of that was going through my head, as soon as I realized what  TWOO was telling me, my throat started closing up, and I couldn’t breathe. I started crying and couldn’t stop, and I couldn’t say anything to anyone because I had no air in my lungs. It was as if The Best Doctor In The Universe had reached down my throat and grasped every ounce of air I had in me, and yanked it right out, along with every last hint of Hope and every last moment of Joy. For those few minutes in The Best Doctor In The Universe’s office, I felt the complete absence of all three of those elements of life.

I don’t know what the opposite of hope is. I wouldn’t call it despair. No, it was just the lack of hope for what I wanted for myself.

And the truth is, he didn’t actually say NO, you can not have this surgery done. What he actually said was “Because of your diabetes, because of your weight, because of your three prior surgeries, because of the extent of the surgery necessary to make you whole again, there is a 20% chance you could die on the operating table.” And while an optimist would say that that leaves an eighty percent chance I won’t, I can not put my family through the worry and angst that I might not live through it.

The Best Doctor In The Universe was truthful and blunt, just like I think a doctor should be. I don’t believe that any doctor should make you think things would be ok if they might not. Especially if that doctor is The Best Doctor In The Universe, TWOO, and has done acres of research into the thing you need to have done.

After The Best Doctor In The Universe left the room with his entourage of interns and medical students, an RN sat with me giving me some options for pain management, light exercises I can do for movement, suggestions for some psychiatric follow up. I couldn’t stand up and walk out of there anyway right at that moment, because I was too blown away by what had just happened.

So, Fabgrandpa and I got in the car and drove back home. I will be calling in a day or two to set up appointments with the Pain Management Clinic in Carrollton, as well as looking for a psychiatrist who specializes in helping people who have had drastic changes to their bodies. It is what I can do for now.

So, my question for you is: is you had something wrong with you that needed to be fixed, but there was a 20% chance you would die if you did it! would you go ahead and do that thing! or would you say No?

 

 

About Karen

Karen Eidson is telling the world way too much about her, whether they want to know it or not. She writes about her life of living full time in an RV, eating a gluten free diet, things she does for fun, and things that are important to her. She makes you look at photos of her grandchildren, talk about her husband's survival of oral cancer, and shows you things she has made. You know you want to look.

Comments

  1. Cat Davis says:

    First, I want to send you a great big hug. While my situation wasn’t quite as drastic, I know that feeling you described. For me, it happened in a dentist’s office.

    Two, I would say those odds are pretty darn good and go for the surgery. If it will improve your quality of life, it sounds like it’s worth the risk.

  2. Oh Karen, I am so sorry. I agree with Cat about the odds but you have to think if it is worth it. (((((hugs))))

  3. Sandy Cain says:

    ((((((((((HUGS))))))))))) I have had several of those Moments. To me, at this point in my life, it’s not really a question of deciding on survival – it’s more like, “Do I want to go through this AND survive?” For most of the Moments, the answer has been no. I really am not interested in surgery, to fix this, that, and the other. I keep getting told to go for assorted tests (colonoscopies, etc), but I don’t schedule them, for the simple reason that if I have cancer or some other catastrophic illness, I don’t have the mental energy to fight it. Does that sound strange? I’m not talking about suicide!

  4. Patsy Stone says:

    Karen, it’s like with both my back/neck surgerys I could come out paralyzed. My neck is so bad I have to be careful I have a high risk even now of that happening, but I don’t live my life in fear but day by day!! 20% isn’t and I know it sounds scary that’s about the average %. You are high risk being a diabetic and as most of us over weight. Go get another opinion it will only take your Time!! I will private email his info. I would not give up on it if that is what your heart wants. Maybe there is some things you can do to prepare ahead. I am so sorry Hun. I know you were scared today, I have been there several times. I had to sign a release paper for my doctor. I was so scared and was crying as I went into surgery. Bless your heart don’t give up on this God does answer Prayers

  5. Krystyn @ Really, Are You Serious? says:

    I’m So sorry Karen. I’ve been in a situation where I didn’t Like what a doctor was saying but not to that extent. I went and had a second opinion in my case, but I don’t know if that’s an option here.

    Thinking of you.

  6. Elizabeth says:

    I had a surgery that (like w any surgery) had some room for “error” as in possibilities of.complications including.death. I.didnt even entertain the thought of those complications and knew I.had to.go.forth. My.quality of life and self esteem needed it. I decided on a secondary procedure to.happen as well while I was “on the slab”. 2 years post op, best decision I ever made. I will say my immediate post op wasnt without “drama” to say the least…. About 4 hours post op I took a turn, a huge turn and a rapid response was called and my BP plummeted to nearly nothing. After some tests and quick responses I was brought in for emergency exploratory surgery. A blown artery was found and I had lost most of my bodies blood volume into my abdomen and had 2 collapsed lungs. After 4 extra days in the hospital, 3 blood transfusions and a night in the icu, I still think the surgery was worth it and would still do it.again.

    I say talk to.your family, talk to.your doctor again, talk to yourself and really weigh out the quality of life vs the chances of complications etc.

  7. I’m so sorry Karen. ((((hugs))))

  8. Karen, I am so sorry to hear that you didn’t get the news you had hoped for. I am glad that you are making an appointment with someone who can help you sort out your thoughts and emotions… while I have never had a diagnosis like this, my infant daughter was born with serious (and ultimately, fatal) medical conditions, and we were forced to make decisions about care based on less than ideal odds. The truth is that I have no idea what I would do in the same situation – no one really does until they’ve lived through it. I can only hope that whatever you ultimately decide, that you will find peace with your decision.

  9. I’m so sorry Karen. I know you were excited for the chance at this. Just throwing out, was there any discussion of IF the diabetes was controlled and/or some weight loss, it would improve the ability for surgery? I hope either way, you can get some help to deal with all that you have been through <3

  10. Brenda Black Sewell says:

    Karen, I can only imagine the disappointment, to put it mildly, that you felt and still feel, but no one can make that choice but you. some may say that 80% chance you would survive are good odds, and they are, but also rationalizing that you couldn’t put your family through the angst and fear is being so very thoughtful also, and very unselfish. I am believing for ,and with you, that the pain management, coupled with professional help, will help you to live a long and productive life. This has to be a very severe blow for you but you can overcome it. Will be glad to see future posts where you are thriving and for them to be encouragement to others facing same or similar situations. Only those who have walked a path can be most beneficial for others just starting down the path! :}

  11. Karen, I am sorry you’re in such a difficult situation. ((hugs))

  12. Some times you just have to do what YOU think is right for YOU! I can hear the sorrow in your writings when you talk about your quality of life. I would hope that your family would want only what is best for you. If you do decide not to have the surgery, you MUST find a way to manage the pain and discomfort and come to terms with how it is going to be for the rest of your life. If the pain can be managed and you can focus your life in a positive direction then the choice is easier to make, but if it is a case of always being in pain…no question what choice I would make. I wish you peace in whatever decision you make.

  13. This is not the answer anyone wanted to hear. Surgery is risky for a lot reasons. But only you can make that final decision. I’m sorry you have to go through this. Big Hugs. I’m hear to listen.

  14. Sending you lots of love. It’s not an easy choice you have to make. Quality of life is so important.

  15. I don’t think I would go for it. 20% is a huge risk. Could you possibly lose weight and that may help bring your risk down? I’m sorry it has come to this though. I know you were so hoping it could be reversed.

  16. Cindy Kingma says:

    I read your blog and have for a long time. Never written you before but this entry tugged at my heart to do so. I heard your heartbreak loud and clear, so since you asked the “what would you do” question I felt that I would give you my perspective on what I’d do. I did have that kind of choice when I had a triple by pass choice or die. I was surprised (denial of symptoms in my face) but like you, I had a blunt, but kind Dr/surgeon tell me the facts and odds and that I might make it thru the weekend maybe, without the surgery. So I had to make my choice in a hurry. Oddly, I asked him 3 things…was he SURE, and how long had he been performing these operations and was he GOOD at what he did. Oh, and could he guarantee me another 10 years. He said yes to all 3, with good humor and I liked that and believed him so I thought….what the heck, I can die within the weekend or I could die on the table or I MIGHT have however long God and my surgeon could eek out for me. I did not consult my family because their answer would be “if it can be fixed, do it” because the alternative was the same as the ‘odds’ on the table (that I might die either way). Honestly, I wasn’t scared…at the operation/odds, of dying on the table (I would be unconsious anyway) and I wanted whatever chance for a little longer (barring future issues) to have a better quality of life. IF there had been a choice between quality vs quantity of life I’ve thought my choice is one I would make at the time and I would choose the same way. I think this is where you are and why you ask the ‘what would you do’ question. Quality of life vs quantity of life…I can’t make your choice, your family wants you to have the kind of life that you want and deserve, you want the reversal for quality of your life……..so in your heart of hearts, you know your leanings so do your sitdown with family members, if you feel you want to do that…and I’ll lay YOU odds that they will be supportive for your hearts desire. And if you don’t make it off the table?? Your death will hurt them whenever you leave them…that is the circle of life, hon. I wish you well on your decision. Big Hugs and you have MY prayers and many others will be in your corner, too.

  17. ” I can not put my family through the worry and angst that I might not live through it.” is what you wrote… I honestly would sit down with your family, or do it when you have started counseling and discuss it with them. Many people go into surgeries planned or unplanned with those odds.
    You have to ask yourself some tough questions- is the outcome worth it? Can you do anything to improve your odds for a positive outcome? How much would your life improve VS not choosing to go through it?
    As we age, surrgeries are just tougher, it takes longer to heal with more complications- is there someone who can take care of you during recovery? Prior surgeries cause scar tissue, will the repair hold or is this going to be ongoing?
    I am so sorry you didnt get the news you wanted to hear so badly, see if there is anything you can do to improve those odds… when you calm down more ask your primary if losing weight, perhapps getting your diabetes under better control could improve the possible outcomes.
    Most importantly, take cae of yourself, dont llet this news send you into a downward spiral.

  18. Cindy Kingma says:

    I hear what your heart wants…sit down with your family members, tell them what YOU want for your life and ask them for their input. Start with your hubby, then to each of your kids. After you listen to what they have to contribute, weigh your decision again. If your heart wants this operation, then you must surely feel that its worth the quality vs quantity thing. I hope you go for it…you will never be satisfied with your life, even on a daily basis, with the alternative, if you don’t. If you truly believe your surgeon is the best, he will give you his best. Your will to live and wish to live fully, is also a wonderful factor in your favor.

  19. Sadie Slays says:

    My father was given a 37% chance of death when he had a stem cell transplant to treat cancer. That was six years ago, and now he’s in such good shape that he takes a 10-15 mile hike every weekend. He had a second brush with prostate cancer last year that involved major surgery to remove the prostate. He was back to hiking within two months, and has been cancer-free since then.

    I truly believe that his positive attitude about the whole ordeal is the reason why he had such an amazing recovery. To him, it was a routine procedure that had to be done and that was that. He knew the odds, but he never once believed that there would be a negative outcome, and that made all the difference. The mind-body connection is a powerful one. I fully believe that your surgery will be successful, too, if you go into it believing it will be successful.

    I’m a longtime reader, first time commenter under this name. I’ve followed your story for awhile, and when I saw the title, I thought The Worst. “The Worst” to me was that the operation couldn’t be done at all, so I was relieved when I read that it was still possible, even if it comes with risks. You’ve still got a chance to fix everything! That’s wonderful news to me!

    Yes, it’s tough news to process, but it’s not “Worst Case Scenario.” Give yourself time to sort it all out before you make a final decision. And remember, you don’t need to decide right away. Take some weeks, months, years, to think about it. Talk to your loved ones about it. See if you can reduce the surgery risks through weight loss and lifestyle changes. There’s still plenty of road ahead and no “dead ends” yet!

  20. I’m new to your blog, so I’m not familiar with your health problems, but after reading this post, my heart goes out to you. You have a difficult decision to make, and it sounds like you have a wonderful family to help you come to your decision. The only advice I would have to add is for you to remember to consider your quality of life; if your conditions prevent you from enjoying day-to-day pleasures, then it might just be worth the chance. But take advice from a stranger for what it is! Best of luck.

  21. I have experienced this feeling many times before. Wishing you the best.

  22. Elizabeth says:

    I come here to read off and on and rarely have commented. Ultimately, you have to decide this. I am so sorry for what the doc told you. I needed oral surgery (which is in general not life threatening), but due to my diabetes (with too high numbers), etc. the specialist that had done another oral surgery on me previously kind of let me have it with both barrels so to speak. Virtually refused to do it, saying I would probably die under the anesthesia. So I simply did nothing. Then we moved from NC to Seattle, WA. I had another tooth break and knew I had to find an oral surgeon (mine, even broken, refuse to come out…so have to be dug out in pieces and this time he went into the jaw bone). This specialist sat us down, explained the risks, and said because I am obese, and with diabetes, he could not put me entirely out but that he believed I would come through it ok and would not remember it afterward. Which is true. No remembrance at all. I was not overly worried; I felt confident in this man. But I told him that if I died on the table, it was ok. That I would know he tried his best and that was all I could ask. Whenever a doctor tries to discourage you from a procedure today, it may have more to do with the govt health invasions to do with insurance. And your age. The goal now is not to treat older people if they can get out of it. In general. Blessings on you as you decide on this choice!! One of my medical friends says to always go to Mayo clinic if you want the best medical available in this country. She has had way more experience than me, as she has a son with severe health issues. I feel too that quality of life is more important than quantity. But you have to decide. And DO seek other opinions. I do not care how good a doctor is…he has to WANT to help you, for it to work out.

  23. Karen, I’m so sorry, I know how long you’ve waited for this and how much you want/need it.

    I didn’t have to make a surgical decision on the risks of not surviving as I know all surgeries have their risks but when I was faced with a knee replacement all I kept thinking of was my mother in law who had a knee replacement and through a series of bad docs and mismanagement lost her leg. One week after surgery I got an infection in the incision and broke down thinking the same thing was going to happen to me.

    Praying that new advances will be made in that area soon and you’ll be on your way to TWOO for that surgery.

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