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Update on the whatisit in my head

Laralyn's picture
Laralyn
Posts: 447
Joined: Apr 2012

Hey folks! Just wanted to stop in for a quick hello and update. I'm still around, responding to posts here and there even if life is hectic right now.

When I saw the new ENT here in LA in late April, he ran a follow-up PET scan. At that point it was about a year after diagnosis (HPV+ SCC Stg. IV) and about 9 months after the end of treatments. Everything looked good except a hot spot at the roof of the nasopharynx. He checked again with the scope and didn't see anything, and recommended I return in three months for a follow-up.

He examined me again last week. The spot that showed hot on the PET still looks the same: no visible tumor or growth, slightly swollen, symmetrical. He said it would be a very ususual place for metastasis or even recurrance, especially since it is unchanged and symmetrical, and put the odds of it being cancer at almost zero percent. Apparenty the adenoids are right above that spot and he thinks it might be swollen adenoids. He asked me to return in another three months, at which point we would do an exam and another PET scan. He said everything else looks good--no evidence of disease.

It's made me think a lot about living with uncertainty. We're always in that state, even if we don't realize it--anything could happen to anyone, any time. Cancer just makes us aware of the uncertainty. I'm dealing with it by going back to meditation, and by making sure I stay on top of supplements. I'm also doing the Whole Life Challenge (eating paleo or low carb, exercising) in early September. 

I'm traveling back to Missouri to be with my mom when she gets her port on Wednesday and then starts chemo on Thursday. I hope this finds everyone else in a state of peace and optimism. Remember, every day is a gift!

CivilMatt's picture
CivilMatt
Posts: 2954
Joined: May 2012

Laralyn,

Thanks for the update, it is good to know you are doing fine and they are watching you closely.  My ENT lengthened my check-ups to every 4 months (don’t know if I am happy about that).  In addition to scanxiety I think I have appointmentxiety or just the unknownxiety.

The realization thing dawned on my wife and me and we decided to shift into high gear and finish our endless home projects.  I do take a few supplements and try to eat better.   I find that my lack of taste keeps me uninterested in over indulgence in eating.

Good luck in all you do,

Matt

katenorwood
Posts: 1827
Joined: May 2012

First and foremost my thoughts are with your Mother as she travels this road.  And of coarse for you and the family.  Your post hit home for me.  And you worded everything so perfect !  Trying to let go, and live life to it's fullest can be a struggle sometimes.  I guess in life no matter the dx, when you looking into the eye of the tiger and realizing sometimes it's out of our hands....it's a bit daunting.  I pray that everything stays stable for you, and it's just inflamation of those darn adnoids.  Be well my friend, and have a safe trip !  Hugs sent !   Katie

hwt's picture
hwt
Posts: 1931
Joined: Jun 2012

Good to hear no evidence of disease for you. I used to tell my sisters that I was trying to live well the last 15 months just in case they turned out to be the "good old days" and, as you know, unfortunately that has happened for me. I am so happy your result was good and send my best wishes for your Mom.

Candi 

patricke's picture
patricke
Posts: 468
Joined: Aug 2006

Hey Laralyn, congratulations on the NEDS news, that's great!  I'm sorry to hear that your mom has to deal with the beast, but she is lucky to have you to help her with the journey.  

I believe that you nailed it (our conscious/unconscious concern) with your comments about living with uncertainty once we have battled the beast, as we never know whether or not another shoe will drop.  I believe in living each day the best that I can, and appreciating the family and friends in my circle.  I too am a fan of meditation, although I have been remiss lately, which I do need to correct as it is good stuff.  I eat (well tube) balanced healthy meals, with some supplements, mostly based on Dr. Oz recommendations; and I love being active hitting the wilderness trails, gym, etc; all part of loving the life I live, and living the life I love.   Yes, every day is a gift, let's keep it movin forward.

PATRICK 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Laralyn,

It's an awesome feeling to meet Mr. NED! Glad everything is under control and you have a Dr. who's looking after you carefully and thoroughly. Sorry about your Mom and having to deal with Jack as a caregiver. You being there for her will be a definite positive in her journey.

Yes, we are "survivors". You're right about the uncertainty, but I guess it depends on the individual in that we're "all different". Some think about it more often than others and as you're doing, we must come to grips with it and find a way to live in that state of peace and optimism. Otherwise, we're not really living but only surviving. 

Positive thoughts and prayers

"T"

 

phrannie51's picture
phrannie51
Posts: 3721
Joined: Mar 2012

Stupid adnoids!  I'm SO happy to hear that we're talking about zero percent chance of it being anything other than swollen adnoids...what a relief, huh....so much on your head these days with your mom.  We have to get in and get checked every three months anyway...so it sounds like the Dr. is putting you back on the "regular schedule" of events.

You're right about uncertainty....these days a "what if" creeps in almost everyday....only for a moment, and I remind myself "well, not today"....and move on.  But the reality is, the days of "stuff happens to other people, not me" are over.  Skipping the small stuff on a daily baisis has been my motto....and it's gotten very apparent....what is small, and what matters.

p

tommyodavey's picture
tommyodavey
Posts: 358
Joined: Nov 2011

Hi Laralyn,

 

You are so right that we will always have that thought in the back of our minds.  Will it come back?  Will it be worse than the first one? Blah, blah, blah.  I have to turn off the tape player in my head as it keeps repeating the same thoughts over and over.

 Dig in hard girl.  Cuss it out.  Refuse to listen to those small wispers of C.  Change the tape to something stress relieving.  Whatever that is for you.  Me?  I love to sing at the top of my lungs in the car.  Only my dog cringes, but it feels soooo good.  I lost some high notes with the BOT surgery but only my dog knows.

 

Hang in there my CSN friend,

 

Tom

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Laralyn,

Congrats on your NED! That's all we ever want to hear from our doc's. It's tough living with uncertainty. My loved one challenges with that from time to time...he is now out of tx about 7 months and got his NED. The challenge for him is no more scans....only chest xrays and scopes. It makes it hard to put your mind at ease. But, hoping we can learn new distractions to keep moving forward with life.

As I have not personally fought the battle, just battled with my loved one, I've always thought life was always about living with uncertainty. I always worried about a car accident with myself or loved ones, motorcycle accident (loved one rides), heart attack (he had a previous heart attack and triple bypass before "c" ), and many other things.....way before "c" came into the picture...so there really always was a feeling of uncertainty. At least when I look back, it seemed this way. We truly have no control over our futures. None of us. Even with or without ever having the "c".

My prayers and thoughts go out to your mom as she travels this journey and for you to get peace of mind as well.

Yes, every day is a gift...enjoy it!

~C

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