Soooo....I Have Cancer

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  • draekin13
    draekin13 Posts: 27 Member
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    13 pages of comments in and I still feel the need to post. My grandfather had tongue cancer probably close to 20 years ago. They removed it from the back of his tongue and used part of the back of his thigh to replace the tissue. Sounds very similar to what you are going through. All you can do is feel like the best is going to happen. He was in his 70s when he had it done and lived a long time after it. We always joked with him about having part of his *kitten* on his tongue, it even grew hair which he said was quite a weird feeling.

    Just believe things will be alright and it will be.
  • lorettasnewbeginning
    lorettasnewbeginning Posts: 136
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    Praying for you....
  • Twisted_sista
    Twisted_sista Posts: 127 Member
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    You can beat the cancer!! It takes a lot share a story like that. You are very brave and very strong!! You will be fine!
  • jktin08
    jktin08 Posts: 62 Member
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    *Hugs* Praying for you
  • Colorfulbutterfly
    Colorfulbutterfly Posts: 7 Member
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    Words just aren't enough at a time like this but I'd be remissed if I didn't take the time to at least try and speak something to your heart. How courageous, you are to even share with us what you are currently facing. I truly believe it's a sure sign and evidence that you will come out on the other side of this thing, GREATER, STRONGER and BETTER!!!

    I, too was given the same news 10 years ago and like you, I couldn't understand how as I didn't indulge in behaviors and habits as well that triggers this kind of a thing. All I can say is that I never would have made it to the otherside of this thing w/out FAITH in an all wise and knowing God! From that day to this day I've trusted Him, leaned on Him and his sovereignty. He is able to do "exceedingly, abundantly above all that we can ask, think or imagine!" (Ephesians 3:20)

    Hang in there! One day at a time! I once heard it said, trying to eat a whole elephant all at once can be very burdensome and disheartening. But if you eat it, one bite at a time, it's less intimidating! Giants, do fall!!!

    Hugs,
    Camechia Nesmith aka "Colorfulbutterfly"
  • bennysammysofie
    bennysammysofie Posts: 331
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    tl;dr...I know.

    I have a history of some ugly white spots appearing on my tongue. They were first noticed by my dentist at a 6 month check-up in 2008 and then again by me in 2010. Biopsies were performed and and each time it was determined that it was just dysplasia. While it didn't seem like a big deal, my ENT removed the tissue from my tongue. It was not a pleasant experience to say the least.

    Fast forward to May of this year and thing started to feel a little weird while we were in California on vacation. I decided to just let it go, see if it would go away, whatever. After about a week and a half, things weren't feeling better so I took a look in the mirror. I knew immediately that something was wrong. It looked completely different than the last 2 versions and was in a slightly different location. I was scared.

    I scheduled an appointment with my ENT for Friday June 14. He did a very thorough exam of my tongue. I could tell he did not like what he was seeing and feeling. He sat down on his chair, expressed an enormous level of concern with what he saw, and then told me those words that I will never EVER forget:

    “You have cancer.”

    My mind started spinning out of control and I felt like one of the characters from Mortal Kombat was using my stomach as a speedbag. I think he just said I have cancer. That cannot be true…can it? This isn't supposed to happen to a 30 year old guy that doesn't smoke, doesn't chew, drinks in moderation, and is arguably in the best shape of his life, right? A thousand questions started flooding my mind. How did this happen? You know this just by LOOKING at it? What are the next steps? I know you are a smart doctor but there is a chance you could be wrong…right? Do I need chemo? Radiation? What do I tell my family? Am I going to die.....?

    Two biopsies, CT scan, chest x-ray, blood work, an MRI, 2nd and 3rd opinions in hand, and 6 days later his original diagnosis was confirmed.

    I have cancer.

    Woah. I called my family and close friends and told them the news. I repeated the story about a dozen times over the following week or so but the words didn't really seem to sink in. That quickly changed during my 2nd appointment with my head and neck surgeon. We reviewed the MRI scan and the tumor was staring me right it the eyes. Talk about a reality check. This *kitten* just. Go. Real. My surgeon put his hand on my shoulder, looked me in the eyes, and said, "You're going to be okay. You're going to be okay."

    The next steps are surgery to remove the tumor and the lymph nodes in my neck, skin graft/reconstruction on my tongue, a 7-14 day recovery in the hospital, an additional 2-3 week recovery at home. After review of the pathology results of the lymph nodes and tumor I'll know whether or not I need radiation. At this time it seems as though it will be necessary (according to my surgeon, but it's technically TBD) which means 6-6 1/2 weeks of treatment followed by ~4 weeks of recovery afterwards.

    Right now it's the fear of the unknown that scares me the most. I have no idea what to expect coming out of surgery. I'll likely need a feeding tube from my noes to my stomach and it's possible that I'll need a temporary tube in my trachea depending on how swollen my mouth and throat are when he is finished working. These things scare me but I know that I am in the hands of incredibly talented and compassionate doctors and nurses.

    I have no idea why I'm sharing this with a bunch of strangers in the interwebz. I'm not looking for pity and I'm not looking for sympathy. Maybe I'm just using this as a form of therapy.

    If you've made it this far, thank you for taking the time to read my story.

    One thing is certain: I'm ready to put up the fight of my life and come out on the other side as a stronger person.

    Kick its *kitten*.
  • TheCrazyCatGirl
    TheCrazyCatGirl Posts: 10
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    You WILL get through this!
  • bwright9752
    bwright9752 Posts: 125 Member
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    I wanted to thank you and commend you for your post. It was very courageous of you to post it and since we haven't heard from you since July 2 I assume you are in the middle of the treatments. We look forward to an update and pray all is going well.

    Because of your post I gave my tongue a thorough self-exam and found a couple of strange white patches on the side. I have an appt with an ENT tomorrow to get them looked at. If it turns out to be cancer I will be so thankful for your courage because who knows how long it would have been till I found it without reading your post.

    Good luck and update us when you can.
  • links_slayer
    links_slayer Posts: 1,151 Member
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    Surgery went well according to my doc. 9 hours and 40 minutes later I was in the ICU.

    After sugery I had a breathing tube in my left nostril, feeding tube in my right nostril. My neck swelled to the size of a softball from the lymph node removal and had a 2 draining tubes in it. My right forearm had a sleeve-like bandage on it to cover the incision they made to take the artery/vein for my flap reconstruction. My right wrist had this weird vacuum bandage on it covering the area that they harvested skin for my tongue from. My right thigh had a ~1.5 inch x ~4 inch area where they took skin to replace to skin on my right wrist. Turns out I didn't need a trachostemy which was good (one less tube coming out of my body...).

    On Tuesday night my blood pressure, pulse, and temp started to soar and I was sweating profusely. My room was set to be maintained at 74 degrees F so the blood vessels in my mouth wouldn't constrict in order for the flap to heal. Every. Single. Bone in my body was saying, "Time to wave the white flag dude. You're done." It was a very odd experience. Every breath seemed to take 5 minutes. I closed my eyes and said to myself, "Not a chance you're giving up now. Keep fighting. Don't give up." I have no idea if they gave me any meds (I'd be surprised if they didn't) but my BP and pulse eventually came back down.

    I was transferred to a "regular" hospital room on Wednesday late in the afternoon. Later that evening my surgeon paid us a visit. He looked at my mouth, said it looks great, and asked if he could share some good news with us. He said (more) words that I will never forget: "The margins on the tumor were exceptionally clear, and so were all of the lymph nodes we removed." Tears welled up in my eyes as well as my wife's. Through a swollen tongue I was able to manage a "Thank you, doctor. Thank you." Since the question was on both of our minds my wife asked what this means as far as radiation is concerned. He said the path results were definitely a game changer but he didn't want to completely rule it out yet. My surgeon is going to meet with a radiation oncologist at his hospital (this whole thing was done out of network....that's a whole other story that I could go on and on and on about....), discuss this at a weekly cancer forum, and also consult a radiation oncologist (in my network) where I would likely receive treatment if needed.

    The tubes slowly but surely came out over the week but I came home with my feeding tube still in. Ugh. What a pain in the *kitten*. It didn't hurt but was uncomfortable and made it difficult to swallow and breathe. It came out at my appointment last week which was awesome. After he removed it my doctor handed me a small cup of water and said, "Here you go. Cheers." It was the first sip of water I had since the night before surger and it tasted oh so good.

    I don't know what the deal is but I've been in essentially ZERO pain since leaving the ICU. It's been at least a week and a half since I've taken any sort of pain med. I'm not complaining. I asked my doc about this at my appointment last week...I was concerned that there may have been some sort of damage or something??...and he just chuckled and said no pain about the best thing we can expect and while not "normal" it isn't uncommon.

    All my wounds are healing and I'm just waiting for the swelling in my mouth to go down so I can start eating real food again.

    I can't get too far ahead of myself and I know I'm not out of the woods yet but things are looking pretty good. I still have a long way to go, especially if we do radiation. But I'm very grateful to be home and even more excited that I can eat soft solid food as long as I can tolerate it. It's getting boring though but I know it's just temporary.

    I have an appointment next Tuesday with my radiation oncologist where we will discuss the pros and cons of radiation for my situation.

    Be Well,
    Josh
  • Ely82010
    Ely82010 Posts: 1,998 Member
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    Thank you Josh for the update and I wish you the best. You are a trooper and a fighter and you will conquer this. Glad that your wife is so supportive, half of the battle is won right there!!

    Hopefully you will be able to chew some real food soon; in the mean time, I bet that the smoothies will keep you nourished :drinker:

    The best to you!

    Ely
  • McCrabby
    McCrabby Posts: 77 Member
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    Wishing you a speedy recovery, and a long, healthy life!
  • KY2022runner
    KY2022runner Posts: 72 Member
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    Thoughts and prayers. You will beat this and come out of it stronger!
  • Lyerin
    Lyerin Posts: 818 Member
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    My thoughts are with you. I wish you a quick recovery.

    As an anecdote, one of my good friends was diagnosed with cancer in 2011 (a form of lymphoma). She had chemotherapy, and less than a year later, she was in remission. She is doing really well and is very strong. Though the treatments weren't easy, she definitely came through with flying colors. I wish for you the same sort of recovery. Know that you can beat it.
  • jofjltncb6
    jofjltncb6 Posts: 34,415 Member
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    Awesome update.

    :drinker:
  • DLH45
    DLH45 Posts: 44 Member
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    Prayers and wishes for a speedy recovery..
  • Deekay8008
    Deekay8008 Posts: 44 Member
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    You've been so brave, strong and fearless, keep it up, wish you all the best in your continuing recovery.
  • VorJoshigan
    VorJoshigan Posts: 1,106 Member
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    Thanks so much for updating us perfect strangers that you shared with!
  • giggalon
    giggalon Posts: 22 Member
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    I hope you have a Speedy recovery. Keep us updated
    XxxX
  • pobalita
    pobalita Posts: 741 Member
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    wishing you all the best - health, happiness, and a speedy recovery.
  • phoenixgirl81
    phoenixgirl81 Posts: 309 Member
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    I just found this thread and I was preparing to respond to your comment about telling your story to a bunch of strangers on the interwebz (I did the same thing when I was diagnosed two years ago and it was the best thing I ever did...got me through it) and then I saw your latest update.

    So glad your surgery went "well" and that the doctor is positive. The pain is excruciating first up, isn't it? Almost like "if they'd have told me it would be this bad, there's no way I would have agreed"...But the fact that you are pain free so quickly is wonderful!! May you continue to be so.

    I don't pray, but I will keep you in my thoughts. May you continue to heal. May you continue to get better and better news. May you recover to a full and healthy life. I celebrate my 2 year cancer-free anniversary this Sunday. May you celebrate many anniversaries too.

    Stay as strong as you can...and if it helps, keep talking to the strangers on the interwebz.

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