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What a Long Strange Trip It’s Been

MarkN_CT
Posts: 11
Joined: Nov 2010

I don’t post very much or very often. I’m more of a “lurker” ‘round these parts. Because of the people on this forum, I’ve had my hopes bolstered, fears quelled, and most importantly, a TON of questions answered. I hope what little I’ve posted has given one or two of us strength on this arduous journey.

My journey took a sweet turn today, as I’ve reached what I feel is the last milestone (aside from regular follow-ups with various doctors that is). After a clean PET scan, my rad and chemo docs allowed me to get my port removed. And at 1:20 this afternoon, that milestone was reached. Finally. Not that it bothered me. Heck, I mostly didn’t even know it was there. But it was there - as a reminder of the surgeries, the tracheostomy, the PEG, the chemo, the thirty rad sessions. Removing it was a signal that I’m done. Sooooo done.

And now? Still getting used to the “new normal” as so many have put it. Which so far hasn’t been as bad as it could be. I’m more than seven months post-treatment, and I’m eating nearly everything I want, and putting weight back on. Taste is close to being back to what it should be, and the dry mouth is now at a “comes and goes” stage. Swallowing can sometimes be a challenge, so I try to be careful when I eat. And to that point, wraps are better than sandwiches, I’ve discovered. Less bread to dry out the mouth!

To any and all who may be embarking on this trip (survivors and caregivers), this can be beat. I’m living proof. And so are many others who maybe had it worse than me. I remember as I left Yale New Haven that day last May after I was diagnosed, and the plan of attack was put in place. The lead nurse for the ENT group told me to keep one thing in mind as I left, even if it was the only thing I remembered from that day: “This is for cure, not treatment”. Looks like it worked. She gave me hope. Hope is what I want to give all of you.

Peace,

Mark

Larla's picture
Larla
Posts: 28
Joined: Sep 2010

I am so glad to hear you are feeling better.I also do not post often since I have three children to take care of but I try to read the posts as often as I can and sometimes am compelled to write something to reach out or try to help.Your Grateful Dead reference made me smile.Keep up the great healing.
Laura

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

Congrats on reaching an important goal for yourself. Amazing how well your doing and the positive attitude you give to so many out there starting and going thru their fight. Now with your experience you can reach out to all those who need your experience.

Love the line "This is for cure, not treatment"

Congrats and celebrate!

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Must agree, bigtime- that is one cool statement from someone on the Med team. Bigtime. And, great to hear you lost the Port, and are doing so good. Life is good, post-tx.

kcass

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Congrats on the clean scan and getting the port out. Must feel nice. Your attitude rocks! Appreciate the hope.

Bob

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Good to hear of your Clean PET and 'Deportation'. Keep on getting better.

Scam

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Congratulations on your milestone! Great to read your news.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Congrats...seven months, I've had and still have the port going on two years now...

I was suposed to and actually can have it removed now, other than an insurance fluke and choice. I was scheduled to have it removed, but my surgeon does it through a separate surgery center. They require payment upfront (my 20%), which is close to $1000. That's just over what I have remaining on my max out of pocket for the year.

Sooo, I know in a few months between scans and other related, I'll have reached my max out of pocket and then it won't cost me any out of pocket money.

I know that it all evens out over time, it's more a principle thing I guess....LOL.

Anyways, enough about me...LOL.

Congrats on being deported.

Best,
John

Hondo's picture
Hondo
Posts: 5789
Joined: Apr 2009

Glad to hear the good news and the NED report, you have been through a lot my friend in the last year my hope and prayers are for you to be NED the rest of your life.

All the best to you my friend
Hondo

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Mark

Your post warms my heart. It reminds me of the day my Stanford doc said the same thing. This is for a CURE! He's never used the word "remission." He also mentioned "95% likelihood" I'm at ten months now, and things are still improving. Saliva is problematic, but I'm adjusting.

Peace and continued healing to you, as well.

Deb

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Love hearing positive news!! Sending happy and loving thoughts your way!

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Got to join the happy team here on the H&N site saying Congrats !!!!! NED is a big load of the shoulders and the port out is another clear sign of good health.....
Keep up the good work,
Steve

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Congrats. And thanks for sharing the good word

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mark,

Always good to see good news. Congrats!

Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

You summed it all up quite well. We "go for the cure" not treatment. Hope allot of newly diagnosed read this while they are deciding what route to take.

I wish you all the best my friend.

Yours in "curing" not treating.

Mike

MarkN_CT
Posts: 11
Joined: Nov 2010

Thanks to all of you for the positive comments and the congrats! It was a hard road as you well know, but thanks to this community, it felt like I had a whole team behind me. And a huge thanks to my caregiver, my wife. Dunno what I would have done without her - going to appointments with me, reminding me of my feeding times, setting up my meds, putting up with ME, etc.

Fight the fight, everyone. Pray, have faith in your docs, and if something doesn't sound right, ask questions. Lots of them.

Later,

Mark

hjc1961
Posts: 8
Joined: Apr 2011

I agree, evrytime my husband went from radiation and chemo I always kept that mantra in the back of my brain, This is for the cure!

luv4lacrosse I saw your picture with your son, I believe, and it warms my heart, I have a 15 year old who is a lacrosse goalie and a 10 year old who is just getting into it, the game has kept my husband and I going!

Enjoy Life!

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