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Great news/ good news/not so good news

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I had my check up today, CA125 at 15.8(where it's been for over a year), physical exam good.  Now, I have the Certificate from M.D. Anderson, suiteable for framing, proclaiming that I have advanced to the Survivorship Program now that I am officialy five years NED!  Whew!  

Good news, the second new heart valve they put in in March is doing well, still flapping!

Not so good news is they found another birth defect in my heart.  A hole in the wall of my left and right atria.  It happens a lot and usually closes after birth/early childhood.  Mine didn't and surgery is not an option now.  Sooooo, I am off to the Cloumiden clinic to start my life long new drug.  Guess two out of three ain't bad, but I was so looking forward to no doctors, test, labs for a whole year!  Rats, foiled again!  Oh well, upward and onward! LoL!  Debra(Jo)

 

molimoli
Posts: 514
Joined: Aug 2014

Debra we can always count on you to teach us how by choice we can be positive even in a bit of rain, With that attitude nothing will knock you down and out. Improved health ,my hope for you and us.  you are loved  and if you forget it just message me and I will remind you loud and clear, WE LOVE YOU Debra.

2 big ones out of 3 ain't bad.

Hugs, Moli. 

ConnieSW's picture
ConnieSW
Posts: 1205
Joined: Jun 2012

I am elated at your 2 pieces of good news.  Bummer about the third.  How on earth did they miss that when you had your surgeries?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1323
Joined: Jun 2015

What a major milestone Debrajo.  Congrats on your 5 years. 

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1045
Joined: Oct 2015

I am so happy Laughing for you and inspired that you have reached FIVE years of NED with this awful disease.  It gives those of us still going through treatment so much hope that this cancer can be contained.

I am so sorry about the heart though.  Our oldest daughter was also born with a heart defect that usually fixes itself in childhood but hers has not.  I don't know how she's presently doing but medication and possible surgery were on the table.

I'm doing my happy dance here for you and hope five, ten, twenty more years of NED are in your future!!!  In ALL of our futures!!

 

Take care,

Eldri

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

this week!  I am concentrating on the big 2 out of 3. May you continue to dance with NED!  In fact, may he be your permanent partner!

Cucu me
Posts: 214
Joined: Apr 2015

be on this board only for us,

take care of your heart,

wish you best of the best

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Thanks every one!  I'll take 2 out of 3 ANY day!  Still trying to live in the moment, not get ahead of myself.  Kinda the "Tortise and the Hare" mentality!  I am so very proud of all you newbies in the way you are tackling this trip through Hell!  I was one big, hot mess when I got here!  I admire how you all are tackling this head on and in your own way(Moli), the humor, the strenght you all have even in the dark times.  I maynot post much, but I check in on you all EVERY night.  You all need me, I'm here reading in awe of all of you!  Love, Debra

AWK
Posts: 364
Joined: Mar 2013

You are amazing.  And I am hopeful that you can knock number three out for a hat trick!  Thanks for keeping us moving forward, inspired and balanced as we take this journey in so many ways.

prayers for you always Anne

Lisa 00
Posts: 134
Joined: Jul 2009

Congrats on your 5 years!  My onc practically did the happy dance when I got to 5 years. 

Regarding your atrial septal defect and the coumadin.  Coumadin can be a bear to deal with and there is a fix for the atrial septum.  I have that atrial septal problem as well but am not on a blood thinner.  I've been offered the option of having it fixed, but I would have to go to someone who does a lot of them.  They go in with a catheter and place a plug of sorts.  If you get sick of the coumadin, you might want to check it out.  Best of luck!

Abbycat2's picture
Abbycat2
Posts: 573
Joined: Feb 2014

Two out of three ain't bad in the grand scheme of life. Keep on keeping on, my friend.  I am still thinking about that rocking chair and spending the wee hours of the night talking to you about LIFE.  Florida is not too far from Texas but Texas is such a huge state! I just might be taking a road trip some day to meet you and the other incredibly strong and wise women I have gotten to know and love here.

You ladies living in FL - well wouldn't it be a treat for us to meet somewhere?!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1323
Joined: Jun 2015

And there are several of us active on the board living in Florida.  :-)

Sandy3185's picture
Sandy3185
Posts: 224
Joined: Oct 2013

I would love that! Let me know when and where and I'll be there.  Sandy

EZLiving66's picture
EZLiving66
Posts: 1045
Joined: Oct 2015

We plan to spend the winter of 2017 in Florida.  It was supposed to be the winter of 2016 but....something else came up I have to take care of.  We could have a Florida get-together!  Ice tea, champagne, maybe a beer??

Take care,

Eldri

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Thanks Cathy!  That would be so great!  Once you cross the border between Louisiana and Texas on I-10 I'm about 20 miles inside of Texas.  I'll do a "Carol Burnett" thing  by getting  those rocking chairs going!.  We can rock, swat mosquitoes,get drenched by the 100 % humidity, drink sweet tea, and sleep all day!  Come on down!!!!

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

It's not just the hole in the septum.  I have an artificial aortic heart valve(the second) from a birth defect also that I have corrected.  They also found that I have a small mass in my heart they do not know what it is.  Opinions range from tumor(cancerous or benine), a blood clot, a showdow, body junk or a misplassed node and or scar tissue. Five doctors, five opinions.  The Coumadin is the only med. that might break up the mass if it is a clot, plus keep the aortic valve protected.    I won't have the hole fixed unless it gives me problems.  Never knew I had it for the first 63 years, so I'm just gonna leave it alone for the next 63 years, Lord Willing!  LOL!

molimoli
Posts: 514
Joined: Aug 2014

Debra ,  Ok a mass is there,While they were guessing ,none guessed that It could be just 'heart' ,these organs do have their own thing going on, like the organ skin ,just look at how many things one would change about our skin,Hair where it doesn't belong ( some of you have no clue ,but wait) Pimples,Blotches,Tags , and Warts  to name a few.Why can't heart have it's own crud that needs no treatment?

A shadow,but shadow of what ?????  Shadow is usually a thing caused by a thing.

63 years and whatever it is, didn't even let you know it's there, in other words didn't mess with you.

Doctors need to resist the ever driving need to mess with and attempt to  fix unbroken things.They spot something different and the renovation begins all the way to the bank.

Until they know what it is how can they safely or semi- safely decide on a particular treatment? We will never know.

These are some of life's questions that makes my eye lashes grey ,I swear I can't find any other reasons for eye lashes to go grey, they are unwanted and unattractive  but takes one's attention away from guessing doctors.(my rant of the day )

Disclaimer: My rant is not intended to discourage treatment,antagonize or question bomb your doctor, when not sure speak to your doctor.

Nuff said, Nuff love, Moli going now to do nuff plucking.

 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

Moli...I am not going to do anything til the Dr.'s can give me a clear idea of what the mass is.  I'm afraid I had a few choise words for the doctor...he told me not to be disrespectful.  I told hil I had been, in my day, much more disrespectful than I was being today!  All the test, ultra sounds, angiagram, echo's TEE's,  gallans of blood, cat scans and they still wanted more test!  Nope, not gonna happen even if I do have wonderful insurance!  The heart dr.s have cracked my chest three time and they want to do another?  Not no, but Hell no!  Hasn't caused me any trouble for the first 63 years, I'm shooting for another 63!  Surgeries have their own risk....I'm like Tigger, I don't bounce well anymore!

Connie....I asked them WHY they didn't find the defect the first three times they were in there.  Their answer, Different part of the heart, we weren't operating on THAT part!  REALLY!!!????

Thank you Suzanne, Hellie, and Keleen, I am still taking this one step at a time.  I gave in and decided to take the rat poisen Coumaden, see if I can be a good little girl.  If not, I'll probably tell all of them to take a flying leap off the nearest high-rise and they can kiss my fat, rosey, red....hand!  Debra

molimoli
Posts: 514
Joined: Aug 2014

You cracked me up, I think I'll even be laughing in my sleep, can't get your rant out of my head, rosey red hand ? that got me ,not what my brain was expecting  but hand will do,I get the picture LOL.

Good luck with advocating for you,  hugs. Moli

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

NED - wonderful news Debrajo.  You have been so supportive to others on this board that you really do deserve this wonderful news of your own.  Sorry it's tempered with the heart issue, but, as you say, two out of three ain't bad.  At least it will be a change of scene with a different set of doctors!

This definitely calls for the happy dance!

Kindest wishes
Helen xx

 

 

 

 

Kaleena's picture
Kaleena
Posts: 1786
Joined: Nov 2009

I keep hearing that song (Two out of three aint bad!)   Glad you had a good physical exam and a good CA125!

With the heart defect, my nephew had that but they found it at birth and he had an operation when he was 3 to fix it.   

 

LIke you say, Onward and Upward!

 

My best to you Debra!

Kathy

Double Whammy's picture
Double Whammy
Posts: 2807
Joined: Jun 2010

I really like your first 2 reports, especially reaching 5 years of NED from UPSC.  Congratulations!  I hope the heart thing will give you no problems and that the Coumadin won't, either.  Here's to the next 63!

Suzanne

It happened to Me's picture
It happened to Me
Posts: 189
Joined: Apr 2014

You are doing great.  Congratulations.  I take your stand on no more tests.

Jeanette

txtrisha55's picture
txtrisha55
Posts: 625
Joined: Apr 2011

Onwards and upwards in your new journey but a big congratulations on reaching 5 years NED.  I look forward to that.  My Dr stills wants to see me every 6 months even though I am at 4 years. That is great news and good news and it is good news that they found the hole and can treat with medicine better than not finding it.  trish

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