New Diagnosis 7/8/14 and Thank You to All

Sonja.K
Sonja.K Member Posts: 79 Member

I was diagnosed on 7/8/14 with oral cancer.    My method of coping was to tune out a lot of the information the doctors gave me, I just went and did everything they told me.  I like and trust my doctors, I was just very angry with my diagnosis and thought it would just go away if I ignored it. 

I don't have all the factual information so many have on these discussion threads have (due to my tuning out).  I was having tooth pain and went to the dentist.  He pulled the tooth and stated I had some bone loss in my jaw and referred me to an oral surgeon.  The oral surgeon confirmed jaw bone loss, did a biopsy and CAT scan, cancer was ruled out.  I went in on 7/8/14 to have my jaw repaired with a titanium plate.  When I woke up my mouth was wired shut and I was told that the oral surgeon found some "funny cells" and it was cancer.  I went to go see the ENT/Head & Neck Cancer Specialist in two days.  This was so overwhelming, I just did not believe it.  The ENT ordered a cat scan, PET scan and after a hellish week waiting for the pathology on the tissue from surgery it was confirmed oral cancer.  The great news was that it had not spread below the collar bone.  I had surgery on 8/11/14, a tissue graft from my arm, 133 lymph nodes total removed from both sides of my neck (only one came back positive, 3mm near the tumor site) and the titanium jaw repair (honestly the worst part for me was the trach and waiting for the hole to close after I had it pulled).   All the sites came back negative for cancer (I don’t think I’m using the correct terminology).  I encountered a delay starting radiation, the ENT thought the oral surgeon had taken care of my dental needs and she had not.  So I went to the dentist and I needed to have teeth pulled so I will be starting 30 sessions of radiation and a test chemo type medication (I can’t find the name of it on any of my papers right now) on 10/6/14. 

I am feeling really good right now.  I started PT and the deep tissue massages and exercises are helping, I just realized today is the first day I have not taken any pain medication (including Tylenol).  As I felt physically better I started to struggle emotionally, I was doing “normal” things with my family and friends but I was not “normal”.  I was starting to alternate between crying and being furious about my diagnosis.  Two days ago I came across these discussion boards and have been reading them word for word.  I cannot begin to express how much better I feel.   Everyone’s helpful information and stories are so motivating and inspiring.  Thank you to all of you who are sharing your journey, you are blazing the trail for us coming behind you!

 

Comments

  • JC F
    JC F Member Posts: 74
    Welcome...

    ...to the club. It's a weird dichotomy to see new people and am glad you found this site but sad you have become part of this club also. I am fairly new here too and have read many inspiring posts since being here. Five weeks out from tx and feeling better every day and trying to adjust to the new normal. No big side effects left, which I am grateful for, except lack of taste which of course takes time to recover. Hope you find what you need here from the experiences of others...we all share a connection that others who have not experienced this battle cannot fully grasp...

  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome Sonja....

    nobody wants to join this club, but if we have to....this is the best one on the internet.  Lots of very smart, kind, supportive people here.  You've been through a lot already, and I'm glad to hear that at least physically, you're feeling much better.  As for the mental....it's normal to be pissed off/scared/depressed....natural first reactions to the diagnisis.....but I'd time limit on it.... give yourself 7 days to have a tiz, then accept the hand you've been dealt.....and focus all that energy on saying good-by to cancer.

    I'm really glad you joined.....this site saved my bacon when I was first diagnosed.

    p

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    sonja, welcome to our

    sonja, welcome to our family.  I'm so glad you found this site and that it has helped you.  i hope you will stick around.  so very happy for you that tx is over and you are on the road to healing now.  you also regain a lot of your time once tx is over!  that's a good thing.  you are right, we do normal things with family but we will never really be normal again.  but we learn to live with the new "us" and it isn't that bad.  it just takes time to get used to.  it will get easier for you and you will soon stop thinking of yourself as different.  hang in there and continue to heal.  before you know it, you'll be fully back to living!

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    Welcome Sonja to the H&N group

    Welcome to the H&N but very sorry you need to be here. This is the best group for suport, understanding what you are going through and feeling, and a great place to just let it out and vent at times. We've all been their. Mine was just above my larnyx [T3,N0,M0,] and I have bad lungs so they had to take my larynx and I have a trach forever but it's not that bad. I can still talk with a prostheses in my neck. I had the neck dissection and they took 86 glands. You had 133 which is a lot. My neck got stiff around the sixth month from the dissection so I take muscle relaxers to help. Keep moving your neck so it won't stiffen up.

    Being scared and mad is a normal responce, but the sooner you can get it behind you the better it is. Why doesn't matter, only what we are going to do to beat it. Take one day at a time, and only today matters.  It is a very bumpy road you are going down, but you can get through it and beat this as so many have. Get an attitude and you will win. We wil keep you in our thoughts and prayers.  If you have not read the "superthread" it is very helpful.

    Bill

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    Sonja,

    Welcome to the H&N forum, sorry you find yourself here.  Many of us go through mental gymnastics until reality sets in and we refocus our lives.  Even through your haze it sounds like you trust your newly formed team (that’s good).

    If you are reading the threads then you know what is ahead of you.  Don’t be too scared, the rough spots come with helpful hints.

    First suggestion, glance through the superthread and start drinking water and swallowing often.

    Matt

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Sonja

     

    I too welcome you to CSN H&N, we are a group of survivors who stay behind to help others like you know that there is life after C., so you are in the right place. Don’t worry about being correct all the time, it is hard as there are so many different names for all the different stuff we have, just glad you found us and hope you stay.

     

    Tim Hondo

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    welcome!

    Welcome to the family!  I have a titanium jaw, too!  Treatment is rough on us emotionally and physically.  Come here to learn, vent, share and be a part of an amazing group!  Kick cancer's butt and we are all here cheering you on!

  • Shell_7801
    Shell_7801 Member Posts: 71

    welcome!

    Welcome to the family!  I have a titanium jaw, too!  Treatment is rough on us emotionally and physically.  Come here to learn, vent, share and be a part of an amazing group!  Kick cancer's butt and we are all here cheering you on!

    Hi Sonja

    I have to chime in to say that we as newly diagnosed have a life line here.  All of the things we don't want to share with our family we can share here.  We can put on a brave face for our family and come here and fall apart.  Everyone understands our journey and helps in so many ways.  I trust what they tell me and know they are always here for encouragement.

     

    Welcome

  • Sonja.K
    Sonja.K Member Posts: 79 Member

    Hi Sonja

    I have to chime in to say that we as newly diagnosed have a life line here.  All of the things we don't want to share with our family we can share here.  We can put on a brave face for our family and come here and fall apart.  Everyone understands our journey and helps in so many ways.  I trust what they tell me and know they are always here for encouragement.

     

    Welcome

    This is such an awesome group

    You are all wonderful!  It sounds like many of you are done with treatment,  it is so helpful that you still are here to offer advice and motivation. I was getting into a funk until I came across this discussion group and you all have made a world of difference.   I feel positive and stronger moving forward, I cannot say it enough.  THANK YOU ALL!