Roller Coasters & Old adages that are true..

NJShore

Good Morning all,

We are back home after the long weekend in Philly. I apologize for not logging in and responding over the weekend as I had planned. I forgot my laptop!
 And not the best at websites on my ipad.

Here's what happened around the surgery that didn't take place on Friday.  Here's a timeline of what happened so far.

Mon, Mar28 - Pet Scan - glowing spot behind the tonsil wall, a bit lower.

Thurs, Mar31 - CT Scan - confirmation of glowing spot, no lymph node found

(Panic'd caretaker and writing of wills, etc.., power of attorneys, dog sitters, mail arrangements, put my sons wedding reception on hold, get coverage at work, financial planning for whatever might happen.)

Thurs, Apr 7th - Dr calls, defers surgery til we get more information, Dr & Radiologist are confused by results conflicts

Friday, Apr 8th - No surgery   MRI Scan

Monday, Apr 11 - MRI Scan results look promising... but Dr needs to call with confirmation and possible followup if he wants more determination..

So, my experience in reference to the old adages.. don't worry until the dr's tell you too.. it's true. It's not cancer til the dr says it's definitely cancer (still waiting for a pass here). And even though I am usually not an outwardly religious person, I have my beliefs and live by them... there is power in prayer.. it's my best tool.

We have been terrified, not by anyones error.. but by facts -- facts that have been scary. However, slowly concern is melting away. And although we will always be ready to do what we have to do, we are greatful that the source of the uptake values might have been edema.. still 3.5 years later. More gifts from Radiation.. and as our dr mentioned last week, unusal in scewing the results.. timing is everything. And of course when he calls, he might have additional tests or biopsies.. but we are much more hopeful because we are following the old adages we learned here!

.. and my husband is thrilled he can still swallow.

Kari

 

CivilMatt

fingers crossed

Kari,

Well good news is easy to swallow and old adages are true for a reason and you my friend should be safely satisfied soon.

Good luck,

Matt

Barbaraek

Continuing prayers

that fears evaporate and you receive good news.

Barbara

NJShore

No Surgery Resheduled!

Hi all,

Just wanted to let you know that late yesterday the doctors nurse called us back and told us the doctor is not rescheduling surgery. And then we saw the report in his online folder from the MRI.

It appears the glow on his PET scan was edema and liquid that still can't find a place to leave the area. Something the doctor said he has never seen this far post treatment - but something he didn't seemed overly worried about either.

Very good news for us. We went out to eat last night to celebrate and were able to talk about what we are going to do in the backyard this summer. 

We still have an appt with the dr on Monday to discuss what this means in how do we know there is nothing hiding in the edema glow. Is he considered NED or something inbetween. But we know it's better when the nurse, rather than the doctor calls.

We've never gotten a really bad case of scanxiety - and this time we did post scan panic really well... hopefully someday they are easier for us all.

Kari

wmc

Yes and that brings this adage; Easier said than done.

Glad to hear you are able to swaoolw and donig well after that roller-coaster ride. I think most do have that, what if it is, stuck way back in their mind all wound up like a spring ready to show it's self. I never had to have chemo or radiation, just surgery to remove my larynx and 86 lymph glands as precaution. They got the tumor and everything around it and more. I look foward to having a check up as I get to see all that took care of me and know it will be NED. Then I read a "New" rate from American Cancer and this one is very specific to what I had. Supraglottic SCC T3, N0, M0, known primory and never spread but the numbers dorped by 10. Now it is 53% odds for 5 years. The older ong was more general at 63% and then you could add, for known primary, not spreading, contained, and that would get it upwards to 75%- 80%. I do like this chart much better. Also do believe that is what or where I am at, even though I have been very lucky and beat so many odds and can do so many thinge I as told a laryngectomee can not do, but I do. Doctor said after the first 17 days and first checkup and the first time to try to speak. I was on a scale from 1 to 10, I was a 14. I was able to speak on the first try and told I won't need speech trerapy or therapy to relearn to swallow and eat. I was very lucky as most do need all of that. Yes I count my blessings and do know I was given a second chance on life as only five thought I would make it through this. Just before surgery I was gray color and coughing up onces of blood and down to 126 lbs. My Son, Brother, Father in law all thought it didn't look good. God love him, mu Father in law drove 300 miles with his Great niece to be there for my surgery and stayed, until I was out and in recovery 8 hours, and he was 87 at the time. Only two at work out of 250 thought I would pull through this because they saw me as work and was a blue-gray color, and scaired the heck out of them just before I went out on disability. It just wasn't my time. 

But that thought is still way back in my mind, all coiled, and just waiting for anything to spring out. Untill "you" or your loved ones,have been told those awful words "You Have Cancer" you just can't really know what we go through. That word is the one word they can't take back, you can't undo hearing it, and you sure can't undo living with it. 

You can, fight and beat it, an live your "New Normal" life a very long time. I do pray daily we all do beat this, and the list has gotten so very long, I just hold up the paper with all the names and say, you got this right? Only then do I say my prayers. You are in my thoughts and prayers, and have been.

Bill

NJShore

wmc said:

Yes and that brings this adage; Easier said than done.

Glad to hear you are able to swaoolw and donig well after that roller-coaster ride. I think most do have that, what if it is, stuck way back in their mind all wound up like a spring ready to show it's self. I never had to have chemo or radiation, just surgery to remove my larynx and 86 lymph glands as precaution. They got the tumor and everything around it and more. I look foward to having a check up as I get to see all that took care of me and know it will be NED. Then I read a "New" rate from American Cancer and this one is very specific to what I had. Supraglottic SCC T3, N0, M0, known primory and never spread but the numbers dorped by 10. Now it is 53% odds for 5 years. The older ong was more general at 63% and then you could add, for known primary, not spreading, contained, and that would get it upwards to 75%- 80%. I do like this chart much better. Also do believe that is what or where I am at, even though I have been very lucky and beat so many odds and can do so many thinge I as told a laryngectomee can not do, but I do. Doctor said after the first 17 days and first checkup and the first time to try to speak. I was on a scale from 1 to 10, I was a 14. I was able to speak on the first try and told I won't need speech trerapy or therapy to relearn to swallow and eat. I was very lucky as most do need all of that. Yes I count my blessings and do know I was given a second chance on life as only five thought I would make it through this. Just before surgery I was gray color and coughing up onces of blood and down to 126 lbs. My Son, Brother, Father in law all thought it didn't look good. God love him, mu Father in law drove 300 miles with his Great niece to be there for my surgery and stayed, until I was out and in recovery 8 hours, and he was 87 at the time. Only two at work out of 250 thought I would pull through this because they saw me as work and was a blue-gray color, and scaired the heck out of them just before I went out on disability. It just wasn't my time. 

But that thought is still way back in my mind, all coiled, and just waiting for anything to spring out. Untill "you" or your loved ones,have been told those awful words "You Have Cancer" you just can't really know what we go through. That word is the one word they can't take back, you can't undo hearing it, and you sure can't undo living with it. 

You can, fight and beat it, an live your "New Normal" life a very long time. I do pray daily we all do beat this, and the list has gotten so very long, I just hold up the paper with all the names and say, you got this right? Only then do I say my prayers. You are in my thoughts and prayers, and have been.

Bill

Definitely Easier said than done

Bill,

Thank you for sharing your story. I think a bit of us will always be wound up and coiled in a corner in our minds. The first and worst news, turned out to be effective treatment, and I think as a caretaker I went into a denial of sorts. I knew he beat it, but my heart could just never really considered him ever having to do it again.  Might be that we have been married for almost 6 years, and even though we are in our 50's, I am counting on a life time together with the man! 

Dan in the first round battle followed my lead. He had never been close to someone going through treatment, he had no idea what to expect. Willingly and easily he said yes to every surgery and treatment, in a very unknowing way. He had to learn through experience. Since I was not considering a reoccurance, he didn't either. I have since told him he's graduated and more experienced than I; yet,  I am still beside him 100%, for better or worse.

I think what this scare has taught us is.. we went through it all, we knew that we were serious fighters and also lucky, and post-treatment we still didn't approach living life to the fullest. We were and are still taking care of everyone else where possible. Now, we are starting to look at what we want, we will not squander the 2nd chance any longer. Once we get through the battle we understand so much more about the passion of life, much more than I did before. It's time to act on it, every day.

Kari