Getting ready for first operation...

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Hello my dear friends. Just wanted to say hello and the share the decisions my family and I made along with the cancer team and surgeons, after Fridays pre-op meeting:

The cancer is spreading faster than they thought, and I am now going to need two surgeries. The first one is going to remove the cancer itself from the tongue. They believe, that after they find out the results from the resection of the tongue - how deep, how far and how much they have to take - and ultimately where it can be reattached - that the will do the neck dissection about two weeks later. But during this first one they will insert a G tube and do a tracheotomy. They say both will be temporary.

Originally, the surgeon was going to do the tongue and neck all in one day, but now wants to wait on the neck. They are only going to need to remove the lymph nodes on the left side. This is good because he was wanting to do both left and right sides at first, even though the PET showed NO signs on the right. But this is the need for the second surgery. There is another specialist who deals with flaps, that doesn't have any openings for a few weeks. He believes that reconstruction is necessary.

Since there was no definitive sign of cancer in the lymph nodes, just serious 'areas of concern', they will remove those in the four areas and also do the flap attachment then as well. I believe this is also the reason for trach. Just want to be safe to have an open airway in case of any complications during any of these surgeries and gain the strength to swallow and eat again.

Needless to say I was a bit down on Friday and decided to take my wife and two sons (5 & 6) to St. Louis for fathers day weekend. I told my wife that we are going to have as much fun as possible and take the kids wherever they want to go...the Arch, The Zoo, City Museum, Science Center, the hotel rooftop pool..haha, I didn't mind a bit. It was our shortened summer vacation, we went all out. :)
We had a blast and it helped keep our minds off of what difficult road is coming up for us.

I am so thankful I have them and now, THIS wonderful community here to help. I wish I had more to contribute, or give back, but I will. Thank you all so much, again, for letting me share here.

Much Love,

~ Bob

Comments

  • meaganb
    meaganb Member Posts: 244 Member
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    I will be praying for wisdom
    I will be praying for wisdom for all of your Doctors and surgeons and also for strength and peace for you, your wife and your children. I have a 1 year old little girl so I know she won't remember any of the things that havevhappened to me over the past few months but I thunk it's a good thing that your kids are a bit older because you can sit them down and explain things to them( within reason, I know you don't want them to be scared or worried about their Daddy). The next few weeks/months are going to be hard for sure, but it sounds like you have a good support system set up and this forum is full of amazing, strong people who have been where you're at. Don't ever hesitate to ask questions or just ask for support or prayer.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Sounds like they've got you all lined out, Bob
    I'm so glad you spent this weekend going to the city, and having one last blast before your road trip begins.

    I'm relieved they decided to do just the left dissection...since that seems to be of great concern to them, then it is probably the best decision.

    Keep us updated (as you feel like it)...you've got "bus-mates" starting treatment right now, along with you...I found it very comforting having other people from here, on our treatment bus...all going thru much the same thing at the same time.

    p
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    Mr. Bob
    you sound like a man with a plan. Where are you having your surgery done? Several of us receive treatment in St Louis.

    Pat
  • Grandmax4
    Grandmax4 Member Posts: 723
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    Peace be with you all
    May God guide the Surgeon's and His Team's hands...
  • Sooner79
    Sooner79 Member Posts: 29
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    Grandmax4 said:

    Peace be with you all
    May God guide the Surgeon's and His Team's hands...

    Positive Thoughts
    With your great attitude, what sounds like wonderful surgeons and the support of your family and friends on this site, I know that everything will turn out great! I am praying for you.
  • katenorwood
    katenorwood Member Posts: 1,912
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    Surgery
    Bob,
    Warmest positive thoughts are sent your way. Sounds like you have been well informed and have a fantastic group of doctors. Prayers for a quick recovery...and wonderful results !
    Katie
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    Surgery
    Bob,
    Warmest positive thoughts are sent your way. Sounds like you have been well informed and have a fantastic group of doctors. Prayers for a quick recovery...and wonderful results !
    Katie

    Prayers..
    Stay positive and have faith and God will see you through this.

    God bless
    Tonsil dad.

    Dan.
  • Sam999
    Sam999 Member Posts: 319 Member
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    Prayers..
    Stay positive and have faith and God will see you through this.

    God bless
    Tonsil dad.

    Dan.

    Hi Bob,
    My thoughts and

    Hi Bob,

    My thoughts and prayers for you and your family. Looks like you have good team of docs taking care of you.

    It was also nice for you to take the small vacation and enjoy.

    You have found the right place for support. Everyone here is soo helpful. Time will pass faster than you think.

    I had my toungue and neck disection in one day in april.

    Dont hesitate to ask any questions. As you can see we ask everything and anything :)

    Sam
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Sam999 said:

    Hi Bob,
    My thoughts and

    Hi Bob,

    My thoughts and prayers for you and your family. Looks like you have good team of docs taking care of you.

    It was also nice for you to take the small vacation and enjoy.

    You have found the right place for support. Everyone here is soo helpful. Time will pass faster than you think.

    I had my toungue and neck disection in one day in april.

    Dont hesitate to ask any questions. As you can see we ask everything and anything :)

    Sam

    Prayers with you Bob...
    I have been to the Arch ..but I could not go up in that little egg. lol. I stayed at the Hampton Inn & Suites with a view of the Arch ..it was very nice. Love the town. But then I worked for Hilton Hotels for 10 years and got a great rate..he he.

    Thinking of you Bob and your family....prayers will continue...

    Tim
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    you sound ready
    Hi Bob,

    Sounds like a plan, a darn good plan. My head swims with your details, just like it did with my own. It sounds like you’ve got an A Team lined up and ready to help you move forward through this battle field. Your weekend trip sounded great and reveals you have an honest and loving perspective of life. Your fellow (bus) partners are here for you and your wife.

    Be brave; be at peace, try to relax and lots of prayers.

    Much respect,

    Matt
  • ditto1
    ditto1 Member Posts: 660
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    CivilMatt said:

    you sound ready
    Hi Bob,

    Sounds like a plan, a darn good plan. My head swims with your details, just like it did with my own. It sounds like you’ve got an A Team lined up and ready to help you move forward through this battle field. Your weekend trip sounded great and reveals you have an honest and loving perspective of life. Your fellow (bus) partners are here for you and your wife.

    Be brave; be at peace, try to relax and lots of prayers.

    Much respect,

    Matt

    We agree
    sounds like you have a plan. Yes I think family time is so precious, I try to remind myself everday of that even with the world spinning around us. Your in the dittos prayers.
  • LeoS2323
    LeoS2323 Member Posts: 160
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    ditto1 said:

    We agree
    sounds like you have a plan. Yes I think family time is so precious, I try to remind myself everday of that even with the world spinning around us. Your in the dittos prayers.

    Good luck Bob
    You sound like you have a positive outlook and that, along with your family, will help you through it.

    All the best for your operation

    Leo
  • BarefootBob
    BarefootBob Member Posts: 72
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    Mr. Bob
    you sound like a man with a plan. Where are you having your surgery done? Several of us receive treatment in St Louis.

    Pat

    In Peoria...
    I am getting the surgery done in Peoria IL. I work dntn there and most of my family live in or around the community. St. Louis is just a couple hours drive, but far enough away that the boys feel its just as good as Disney World. OSF and Methodist Hospitals will be doing the treatments and surgery. There is a 'team' that all kind of work together here in town and schedule at both hospitals.

    The tumor board here in town, actually used my case as its main focus last Wednesday when they met, so I feel that they all collaborated together to find the best possible outcome and chances to recover as best as possible. I actually am very comfortable with my team after, getting rid of the first Rad. specialist who came across like a worn out slug, who had no passion for his work, no bedside manner and just awful consultation altogether. But that is in the past and the future is where I am looking forward to with a positive attitude.

    Thanks for all your prayers, as I will keep all of you, in mine, as we all go through this journey together.

    Much Love,

    ~ Bob
  • BarefootBob
    BarefootBob Member Posts: 72
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    Grandmax4 said:

    Peace be with you all
    May God guide the Surgeon's and His Team's hands...

    Thank You.
    Thank you for your gentle words and strong faith.

    ~ Bob
  • ooo
    ooo Member Posts: 105
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    Great attitude, Bob. That's
    Great attitude, Bob. That's the right way to start your journey. I wish you all the best.

    Dre.
  • BarefootBob
    BarefootBob Member Posts: 72
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    LeoS2323 said:

    Good luck Bob
    You sound like you have a positive outlook and that, along with your family, will help you through it.

    All the best for your operation

    Leo

    Thanks to Everyone....
    Thank you all so much for all the kind words and support. It can be so scary when you have soooo many questions that people ask you, and you have no answers to tell them.

    Even the insurance papers that I had to file for work last week, the doctor had to fill out almost every question with 'unknown' or 'depends' - when asking about returning to work, how much time will be needed off after the initial surgeries, meds (can I perform my daily tasks) on them, how long can I work in a given week, etc., etc. - You have all been there, so you know. My boss and work has been real supportive and understand so that has been a lifted burden as well.

    One last thing, I did see the dentist today and he did a thorough cleaning and had impressions for floride trays made. Re-filled some minor cavities/fillings that were old and cracked, gave me a professional sonic toothbrush and important dental care info to prepare me for the posible radiation treatment. Thanks to those of you on here that suggested I see a dentist was great advice. And It looks like my insurance will be covering 80% of it too, due to the fact that is was "Medically Necessary'. So thanks again for the great advice.

    I will be in the hospital for a week after the surgery, so I will try to hope on here as soon as I can, to let everyone know how things are going.

    God bless you all. Of all the madness that goes on in our everyday lives, its so comforting to know when I come here, there is nothing but compassion and true empathy and humanity at its finest within this community.

    Much Love,

    ~ Bob
  • NitaNita
    NitaNita Member Posts: 56
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    ooo said:

    Great attitude, Bob. That's
    Great attitude, Bob. That's the right way to start your journey. I wish you all the best.

    Dre.

    I was just thinking of you..
    I was just thinking of you since I knew you were going to be having surgery a few days after mine. I go in tomorrow at 8:30am. Things are going to be okay and you will get through this! Glad you posted I was hoping to see what you said before I went in. Good luck, you will be in my thoughts!
  • BarefootBob
    BarefootBob Member Posts: 72
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    NitaNita said:

    I was just thinking of you..
    I was just thinking of you since I knew you were going to be having surgery a few days after mine. I go in tomorrow at 8:30am. Things are going to be okay and you will get through this! Glad you posted I was hoping to see what you said before I went in. Good luck, you will be in my thoughts!

    Hey Nita,
    I know that you wont read this till after your surgery, But I,, too was thinking of you this morning. I know everything will go well and hope to chat with you soon. ::prayers with you and your family today::