Phantom Pains

The two days following surgery, Saturday and Sunday, were the days that make the whole experience dreadful.  They are still pretty cloudy as I try to recollect all that happened.  I tried to keep up with the blog starting Friday evening following surgery, but gave up after typing sentences and then forgetting what the subject was before I even got to the end…very frustrating!  The most important thing on my mind during these days was getting the pain under control.  This was initially being accomplished with Dilaudid, which was being delivered through my IV.  I had a clicker that allowed me to dose myself once every six minutes.  I was afraid of what I would experience if I didn’t push the button, so I clicked it every time the light indicated that I could.  But after a day or so, the narcotics create the absolute worst groggy and headachey feeling, so I challenge the pain a bit more to start weaning myself off the button.  It was Sunday evening when I finally transitioned from the Dilaudid IV clicker to Oxycodone and Tylenol pills.  It was great to see the drug that I associate with nausea and sickness go, as well as the noisy and disruptive apparatus that they are injected with — this also helps with sleep!

The pains that I’m dealing with from this surgery are very different than with the other surgeries.  I still have some sharp incisional pains like what I experienced during my first surgery where they removed an abdominal muscle, but the most difficult and predominant are nerve pains.  Even with my right leg gone, I continue to feel shooting “phantom” pains running up and down the leg.  The one that bothers me most is a pulsing feeling in my “phantom” foot.  Without looking and moving, I honestly feel like I still have two legs.  Fortunately, these pains are all suppressed quite a bit with the drug Lyrica.

Friends and family are extremely comforting to have with me during this time.  However, it comes as sort of a mixed blessing as you lay in a hospital bed surrounded by all of the important people in your life and you’re wearing a goofy looking gown, have hoses and tubes attached for all sorts of embarrassing bodily functions, are in a dazed and confused state from the narcotics, and best of all, you haven’t showered and smell awful.  Meanwhile, friends and family greet, hug, and kiss, and all I can think is, I feel bad for them being exposed to my current lack of hygiene.  I love having everyone here supporting me, but I just hope that you all don’t hold my hygiene against me for the rest of your lives.  I swear, I’m a clean kid!

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About bhoefen

Going on a road trip.
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19 Responses to Phantom Pains

  1. Ginger Johannes says:

    I think you are very handsome with a fuller beard.!!!

  2. Johnny Z says:

    Bret, you crack me up. After all you have been through you have still maintained your sense of humor and your concern for the well being of others and last but not least that horrible stench. I wasn’t going to say anything but since you brought it up….(you are the only person I know that could come up with something like that after a major surgery). I wish everybody could have seen you after your surgery. I’m certain they would have been as impressed as I was. I am still blown away by your strength and determination. You and the rest of your family are truly amazing people and are blessed to have each other. Oh and don’t forget about the greatest support group ever. We are here for ya!!!!!

  3. Cousin Mike says:

    Hey Bretski. As a Phys Ed teacher, I understand what it’s like to not smell good–from personal experience working out and from my experience teaching Junior High kids. I’d like to come visit. Don’t worry, I’ll bring deodorant–for both of us!
    By the way, I have a present for you–just arrived today! You’ll just have to wait in anticipation until you decide to let me visit…

  4. Lynne Hudak says:

    Hi Bret,
    It is good to hear that the surgery is behind you now. I am continuing to remember you in my prayers and I pray for your healing and adaptation. Your Uncle Kevin and I have a cousin Barb who lives in Michigan who had a below knee amputation a couple of years ago. She was riding her motorcycle and collided with a truck. I told her to check out your Blog, and she told me to tell you to check out a web site, LessThanFour.org
    It was started by a young man who also lost his full leg to cancer when he was 11. He must be in his early 20’s now and has started this social network for amputees. He has a really upbeat U-Tube rap song on the site.
    Take care, and I can’t wait to hear about Alaska!

  5. Denise says:

    Bret,

    You are an amazing person and I just want to let you know that my family is rooting for you. If I miss even a day of what has happened on your blog, my dad is there to let me know how you are doing. He just keeps telling me how amazing you are and tells me stories of when you or Aaron would come over to see one Erin or the other ;o). So you are in my family’s thoughts and prayers.

    And on a personal note, I think if anyone can beat this, it is you. You were always the courageous and strong one. You ran the fastest, could do the best tricks on your snowboard and not fear a crash landing, paint the best, draw the best, and you were even great at math. You are an all around winner, even if you are a bit of a dirty winner ;o) (hehe just kidding). I see you as a motivational speaker and a gold medal winner in some sort of olympics. You are that person that awes the rest of the world. I wish you the very best Bret and I wish your family strength and happiness in this tough time.

    Take care and on a side note, if you need any Texas Sheet Cake like my mom used to make to get your spirits up, I’d definitely be willing to drop some off and I promise not to stay and be in your family’s way.

  6. Sherri Kennedy says:

    Bret, Bret, Bret….
    Hate to break it to you, but your family and friends frankly don’t care about your unstylish gown, potentially rank odor or watching fluids and such fill a bag or two. They only care that this is now Day +4 after surgery and you are HEALING. Your family and friends around you are truly blessed to be there with you. There are a lot of us (including me) who would love nothing more than to walk into your room and give you and your beautiful wife and wonderful parents a hug, a high five or a hand shake.

    Oh yea…and that whole start a sentence but then can’t remember the subject thing…some of us have that problem and it’s not drug induced!!
    So glad to see you blogging. Please take 1 day at a time and be patient with yourself.

    I’ll check in tomorrow.
    Love to all of your team.
    Sherri

  7. Mary Beer says:

    Really Bret….really? After all you have been thru you think that one person would be put off by the stink? As you continue to share who you are with the rest of us…I can only say…WOW! On the day of your surgery, we had a prayer team praying for you and when I got home there was a thank you note from you and Shannon….you continue to amaze! I in no way expect a note given all that you are facing and yet, there you and Shannon are, demonstrating the depth of your characters. I am humbled by your spirit and keep asking myself whether I would be able to demonstrate your courage! I am still praying that pain relief is on the way.
    Mary

  8. Eric D says:

    Hey Bret,

    Your positive attitude and tenacity over the past couple months has been amazing and is an inspiration to me (and I am sure everyone who reads your blog). Just wanted to let you know my thought and prayers are with you for a quick recovery man. Hopefully we can share a couple beers and a garbage plate soon.

    Eric D

  9. Carol burke says:

    You are welcome to come down to Destin as long as you shower! Keep up the good healing!

    Love,
    Carol Holly

  10. Cousin Michelle, Mario, and Simona says:

    Showers are over rated anyway. 🙂
    Glad you are doing well. Positive thoughts are being sent your way all the time!
    Thinking of you!

  11. Dani Solberg says:

    Hey you! I am glad to see you still updating your blog even with everything you are going through. Phantom pains are the WORST thing I have ever experienced. It has been exactly a year next Friday from having my leg amputated and being Cancer Free. I still experience those pains. They had me on a drug for the nerves called “Gabapentin.” I was told it would help the nerve endings and would control the phantom pains which are nerve related. WELL it made it worse for me. I stopped the medication back in Decemeber. Was expensive too without having Insurance. Since I have stopped it the pains came and went on occasion so it was actually better. I am so used to it now that I still have the pain and the feeling of my leg being there and my toes but I am used to it that it doesnt bother me as much. The feelings are crazy. One day I was getting out of bed and I could feel my toes and went to stand up and fell over. I forget i dont have a leg till I look. CRAZY feelings you will have to get used to. It does get better and I promise you that. I didnt think it would. If you ever need advice or want to talk let me know! You are all in my thoughts. Keep yourself busy so your thoughts dont wonder too much about this all! HUGS! ~Dani Solberg

  12. Teri Cotter says:

    Bret,
    You and your family are truly amazing and the definition of unconditional love and support. Your mom was my teacher in highschool and to this day one of my favs. I have been following this blog and you are truly inspiring and I have shared your story with my children (13,10 and 6). They wear the wristbands and have now learned that if you have family and a positive attitude anything is able to be achieved and overcome.

    Best wishes for these days to move quickly for you and Shannon and you can be back on the road again.

    Teri Cotter

  13. Uncle Lee and Aunt Sharon says:

    Dear Bret,
    So happy to see these two latest posts since your surgery because that means you are getting better and stronger everyday if you are posting again. Our thoughts have been with you non-stop and we’re always so anxious to hear the daily updates from your Mom and Dad. We’ve been holding off coming to see you (and know that it has been very difficult!) until you were feeling better and so you could rest as much as possible to get your strength back. From our latest report this morning, sounds like you and Shannon both got a good nights sleep last night and you are doing better. Hearing that was a wonderful way to start our day for sure! We know they’re going to be working you when it comes to getting up and moving so just do what you can and know that each day will get just that much easier. Pretty soon you’ll be kicking a_ _ !
    As far as the “hygiene issue” goes, Michelle got it right – showers are over rated! When I worked in the hospital many years ago now, on busy weekends when we were always very short-staffed, we’d do the modified version of the “bed bath” – pits and pubs” (arm pits and privates) Can you believe I’m writing this on here!!!! 🙂 Anyway, it seemed to do the trick! So don’t worry, I’m sure it’s not as bad as you imagine and no one cares – we’re going to love you and be happy to see you no matter what!
    Sending you all our love, lots of prayers and get-well wishes for a speedy healing and recovery! I’m going to start cooking and baking tomorrow, so if anything particular sounds good to you, please let me know. Take care and know we’re with you all each and every day. See you soon!
    Much love and hugs,
    Aunt Sharon and Uncle Lee

    P.S. “Happy Birthday, Shanny!” We thought of you all day Monday and sent lots of special birthday wishes your way. Love you!

  14. Alex Boyles says:

    Hey Bret! I just wanted to say that I’m glad your surgery went well but I’m sorry your in pain though. I’ll be keeping you in my thoughts and prayers!! You hang in there man!

  15. Kristie Bergvall Vota says:

    I think of you often. You remain in my prayers. Love your spirit. You continue to amaze me in so many ways.
    God Bless,
    Kristie

  16. Yvonne M Sellers says:

    You & your wonderful Family are in my thoughts and prayers daily. I join in with everyone else who tells you not to worry about your personal hygiene. Your Family is most likely more concerned with your healing than whether or not you smell good or your teeth are sparkling white. Continue concentrating on your health & healing. Worry about being ready for GQ for another day. Your strength is an inspiration to us all.
    Yvonne M Sellers

  17. Debbie says:

    Eau de Bret–has a nice ring to it.

    A spicy scent but with a piquant reminiscent of northern woods in fall. A man’s scent that holds women in thrall with its subtle hint of musk. A must for any man as a personal gift that will last a lifetime.

    Do ya think I write advertising copy for a living or what?

    Seriously, I’m certain Eau De Bret would be a HUGE success on the shelves of Bloomingdales–but your friends and family don’t give a hoot about how you smell. Or how you look (though I really do dig the beard). And I heard hospital gowns are the toast of the town in Paris fashion week this year.

    All that said, the only thing they (and all of us) care about is that you feel better and be pain free. I was asked today from a concerned friend..”Does this mean that Bret is cancer free now?” I had to stop and think about it. And with a smile on my face I responded–I believe it does! He does not have any tumors anywhere else!

    And that mere thought lifted my own spirits. I pray and hope that it will continue to be true. In the meantime, rest–kiss your loved ones with horrendously bad breath and spread Eau De Bret around for the world to enjoy!

    And do me a favor? Kiss that wife of yours for me and wish her a very Happy Birthday too. We love you both so much!!

    Sissy

  18. Carolina DeHond says:

    Bret,
    You don’t cease to amaze us! When Craig and I finally were able to visit, you looked amazingly with it! We are very impressed you have been able to start your blogging so quickly- I can sympathize with the frustration those nasty drugs cause 😦 We pray your phantom pains become less and less as you become stronger! Hope you will be able to find the European style crutches on line.. if not, let me know and maybe we can send for them from my Aunt in Italy!! They are really a TON better then the traditional crutches here in the US!

    I can totally sympathize with the embarrassment from the lack of hygiene during my hospital stay. Honestly- you didn’t gross anyone out! I was always afraid to have people come close while I was recovering from surgery 😦 We had the privilege of meeting you before surgery and attest to your good hygiene 😉

    We are praying for continues strength and Less phantom pains!! Hope to see you soon!

    Love, Craig and Carolina

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