Checking in...

Laralyn
Laralyn Member Posts: 532
in Head and Neck Cancer #1

Hi, folks! Sorry for the absence--life has been busy and, to be honest, after losing my mom to cancer last year I think I needed a bit of a break. I'm doing fine, though--ENT check-ups are all clear. The last PET scan around a year ago had an unknown hot spot in my nasopharynx but my ENT said he'd never seen cancer look like that and it hasn't changed since he started keeping an eye on it. I have the final PET scan to close out treatment in around a month. I have some side effects, like my thyoid fading away and some peripheral neuropathy starting (which I didn't have until recently), but those are small things compared to still being around to turn 50 last month. :-)

I celebrated turning 50 by doing something called Train Jam, where a bunch of people (well, a bunch of kids + me!) got on a train in Chicago and made video games on the ride to the Game Developer's Conference in San Francisco. The game I made is about the people you meet, the reasons people travel, and the importance of time. Those are all things on my mind as I also celebrate the third anniversary of my diagnosis, which is on a date very close to Phrannie's. 

For those just starting this journey, there isn't just life on the other side--there are all sorts of possibilities for new experiences. That can be your new normal: the recognition that every minute we have matters. I'm glad to see so many people who made the journey around the same time I did are still here posting. I'm hoping to be around more on the boards too!

So here's to all of us seeing more new beginnings than endings!

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    check-in complete

    Laralyn,

    So great to see you here, I am glad you are doing fine and a birthday milestone to boot,.

    I occasionally think about you and gaming.  Your Train Jam reminds me of the folks on the H&N forum, the people and  the stories.

    Nice picture!

    Matt

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    Love the new pic!!!

    ...and I'm so glad you checked in.....I think about you more than you know.  Sounds like you are doing pretty darn good, and your trip with the kids....wow, what a great idea!

    Merry 50th birthday.....and happy anniversary....I remember when 3 years in recovery sounded SO FAR AWAY!  I always love hearing from you....you were my buddy during treatment....you led, I followed...LOL.

    Hugs.

    p 

  • CajunEagle
    CajunEagle Member Posts: 408
    #4
    So good to see you hopping.

    It is great to see you guys doing so well.  Being that I was 6 years doing just fine from my initial diagnosis of stage 4, left tonsil cancer, I noticed a small bit of blood on my pillow at the beginning of this past February.  Wife said it looks like it came from a small brown spot between my right ear lobe and sideburn.  Made an appointment for my Dermatologist, and wife and I discussed that this "spot" had been biopsied within the last year....(nothing).....and burned/sprayed at least once.  Dermatologist took another biopsy and three days later CALLS ME ON THE PHONE and informs me that I have Level 4, intermediate Melanoma Cancer.  Needless to say I was p...ed, and drove over to her office.  Since my Dermatologist for 30 years had recently retired, I had by default ended up with this cute child, who had only finished up residency 2 months prior.  In no choice words, I told her never,never call a patient on the phone....or use any other electronic wizidry....to tell somebody that they have cancer.  Anyway, my great Head & Neck surgeon from the last time agreed to operate on me and to keep my smile.  On Feb. 24th I had a 2 1/2 hour full blown surgery.  Bandaged up all around the right side of my head.  On March 10th, since they didn't get clear margins, we do another hour and 45 minute surgery, and results came back clear this time.  On March 17th, I got through a PET scan to find out a few days later that I have cancer cells in my facial nerves.  We then go to my Radiation Oncologist, who tells me that Radiation therapy is out of the question due to no known target to radiate.  Surgery is out due to the possibility of no healing due to former radiation in the area.  So I guess.....for now... I'm keeping the facial nerve involvement for the duration.  Last Thursday, I had ear/facial reconstruction, wheras they took a 4"x5" graft from my right outer thigh.  Should find out on the 1st of April how that all turns out.  I'll make an effort to keep this board informed.  Hope all is well, and good to hear from y'all.

    Larry

  • MrsBD
    MrsBD Member Posts: 615 Member
    #5
    Laralyn, we haven't "met" yet

    Laralyn, we haven't "met" yet on this board, but thank you for being an inspiration to those of us who aren't quite as far along on the journey.

    CajunEagle, you have really been through a lot. Hopefully the doctors will have some good options for you soon. I will add you to my prayers.

     

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #6
    CajunEagle said:

    So good to see you hopping.

    It is great to see you guys doing so well.  Being that I was 6 years doing just fine from my initial diagnosis of stage 4, left tonsil cancer, I noticed a small bit of blood on my pillow at the beginning of this past February.  Wife said it looks like it came from a small brown spot between my right ear lobe and sideburn.  Made an appointment for my Dermatologist, and wife and I discussed that this "spot" had been biopsied within the last year....(nothing).....and burned/sprayed at least once.  Dermatologist took another biopsy and three days later CALLS ME ON THE PHONE and informs me that I have Level 4, intermediate Melanoma Cancer.  Needless to say I was p...ed, and drove over to her office.  Since my Dermatologist for 30 years had recently retired, I had by default ended up with this cute child, who had only finished up residency 2 months prior.  In no choice words, I told her never,never call a patient on the phone....or use any other electronic wizidry....to tell somebody that they have cancer.  Anyway, my great Head & Neck surgeon from the last time agreed to operate on me and to keep my smile.  On Feb. 24th I had a 2 1/2 hour full blown surgery.  Bandaged up all around the right side of my head.  On March 10th, since they didn't get clear margins, we do another hour and 45 minute surgery, and results came back clear this time.  On March 17th, I got through a PET scan to find out a few days later that I have cancer cells in my facial nerves.  We then go to my Radiation Oncologist, who tells me that Radiation therapy is out of the question due to no known target to radiate.  Surgery is out due to the possibility of no healing due to former radiation in the area.  So I guess.....for now... I'm keeping the facial nerve involvement for the duration.  Last Thursday, I had ear/facial reconstruction, wheras they took a 4"x5" graft from my right outer thigh.  Should find out on the 1st of April how that all turns out.  I'll make an effort to keep this board informed.  Hope all is well, and good to hear from y'all.

    Larry

    Wow what a tough phone call

    Yes to call and tell someone well its cancer stop on by sometime is a crock.  With that peice of news we need all the information we can get and give and take about what can be done.  I sure hope that you have a ton of luck and that things just stablize and slowly improve.  Been though hell and back and now again.  To say life is not fair hardly describes it.  

  • hwt
    hwt Member Posts: 2,328 Member
    #7
    MrsBD said:

    Laralyn, we haven't "met" yet

    Laralyn, we haven't "met" yet on this board, but thank you for being an inspiration to those of us who aren't quite as far along on the journey.

    CajunEagle, you have really been through a lot. Hopefully the doctors will have some good options for you soon. I will add you to my prayers.

     

    Laralyn and Larry

    Laralyn, good to hear from you and that things are going well for you. Larry, sorry not the same news for you. Don't give up hope of finding the right tx for your facial nerve, keep researching. And, good for you, telling the doctor how you felt about her phone call.

  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    Good to hear you are doing

    Good to hear you are doing well and continue to celebrate life. Praying you continue to heal.

    Debbie

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    Laralyn, so glad to hear from

    Laralyn, so glad to hear from you.  sounds like you have been having fun and enjoying life.  you know we understand about needing a break.  heck, we all take one now and then from something.   your game sounds like fun.  what a neat trip.  congrats on the 3 yr mark!  that is really close to 5!!  also, happy birthday!!!  that's a big birthday so i'm glad you did something special.  good to see you back but even better to read you're living life!

    God bless you,

    dj

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