They're Ba-a-a-a-ack!

The HAIR and the COUGH are both back, in full force!!!!

In fact, Bert's hair was getting too long for him, dare I say, reaching borderline mullet status!  It's thick and full, and CURLY in the back!  He's got that sexy hair thing going on again!

And with every haircut comes a little visit with our favorite hairdresser, so it's definitely a win-win!

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Unfortunately, the damn cough has slowly returned!

It started a few weeks back, here and there, a little dry, annoying cough.  It has morphed into the deep, painful, forceful cough that hurts all over and zaps his energy.  Yes, the one from this summer...the one that keeps him up all night...and makes him sound like he's about to cough up a lung!!

Thankfully, we have a visit coming up to MD Anderson in a couple of weeks.  We pray that it's something that can get taken care of quickly, like last time.  But it would also be nice if it wasn't coming back like this.  Last time, they said it was harmless fluid that was a result of radiation to the chest.  

They tested it last time, for cancer cells, but didn't find any activity.

I will be super thankful if his energy and health return as quickly again!  

Thanks for checking on us!

Finally! Some great news!!

Both kids tested NEGATIVE for the MEN1 genetic mutation!!!!

It took forever to find out, and of course, there was DRAMA!!!

The genetic counselor called the house looking for Jacob one afternoon.  But, he was at work!

Albert was still on the phone, getting NO information, because both kids are adults over 18, when Kasey started calling on the other line.  Apparently, she wasn't gonna wait and she called my cell phone.  She was crying and I was scared to death because I thought it had to be bad news! 

But it wasn't, her tears were tears of relief!  She felt so happy that she was in the clear!

The counselor left a message for Jake to call her back! but since he works every night until 10, we knew we weren't finding out that day, <sigh>!

The next morning he called, got voicemail.  Then called in the afternoon before he left for work, got voicemail, <double sigh>!!

Seriously, by the next morning, I was a nervous wreck!  I was cranky and harassing Jake until he called again just to appease me, you guessed it!  We got voicemail AGAIN!  <triple sigh>!!!

Jake was getting ready to head out to work and he stops to tell me, "oh yeah, I forgot to tell you, Ms. Jackson called"...pause...sad puppy dog eyes...I'm a ball of nerves...he's formulating his speech..."she said I'm negative!"

Let me tell you!  I was screaming and wanted to kick his scrawny butt to the moon!

Dammit!  We were on pins and needles for almost two full days...

How could we be happy that KC was in the clear, but what if Jake wasn't?  We couldn't celebrate too hard for her and make him feel like crap if his news wasn't good...

Torture is the only way I can describe it.

Let me tell you!

The celebration, elation, relief, utter happiness was indescribable!  They weren't gonna have to worry about this dreadful disease that was slowly taking their daddy!

Our family genes give us enough to worry about!  Diabetes, high blood pressure, heart disease, obesity...the list goes on!  At least there is ONE they wouldn't have to worry about!

The best part is that they also can't pass it on to their kids!  It's not recessive/dominant.

Albert's DNA had an omission that my DNA filled in!  Now they can only pass on the complete strand.

Thanks for all the prayers, I know they helped!

(P.S. I haven't forgotten to tell y'all about their day at MD Anderson, but I will, SOON!)

November is NET cancer awareness month

NET cancers are NeuroEndocrine Tumors (carcinoids).

Yes, the month is almost over, but I believe that it's better late than never!

The cancer that invaded Albert's thymus and is still inside and around his heart, is a NET cancer.

It's one of the rarer types of cancers, with the bleakest survival rate.

Depending on where it's located, it may or may not respond to treatments.

Every person's NET cancer is different because it can occur in so many different places in the body.

Either they grow very slowly or very aggressively, and usually aren't detected until they are very large or affecting other organs.

You can learn more about them at:  http://netcancerday.org

Happy Veterans' Day!

December 1988

I know it's late in the day, but I didn't want the day to go by without wishing Albert a very

Happy Veterans' Day.

He served your country while the country was at war.

Not everyone who serves their country comes back home.

Thank you to every service man and woman who has sacrificed comfort, family, limbs, sanity, and life for our freedom.

Albert, I am lucky that you are with me today.

It's REALLY been a YEAR!!!

Our Halloween Graveyard 2011

Happy Halloween Everyone!!

And Happy One Year Anniversary to my best friend:  Albert!!

One year ago, today, yes...on Halloween Day, the endocrinologist called Bert and gave him the bad news.  It was a big word...CANCER...followed by another...hard to hear/pronounce/swallow diagnosis... Neuroendocrine Carcinoma....I had to write it down...to remember it.

I remember the fear.

The immediate zap of hope and future...all in an instant.

We got off the phone and looked at each other in complete shock.

The rest is sort of a blur...

I don't even remember if we hugged, or cried, or even spoke.

I do remember that we turned off our front porch light that night...no trick or treaters that day...we couldn't even handle the door bell ringing...

So here we are...one year later...and according to all the statistics...Bert is one living freak of nature...ok, a miracle!

He survived...against the odds...he is among the living and we will take that bet any day!!!

Thank you friends, family, and followers who have supported us along the way...it means so very much to both of us!

Woody and Jessie-2013

The oxford journals has more on the survival rates; but to sum it up, the 5 year survival rate for his specific tumor type/location...is 0%.

Read more at:  http://annonc.oxfordjournals.org/content/23/suppl_7/vii120.full

http://annonc.oxfordjournals.org/content/23/suppl_7/vii120.fullPrevious Section

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Radiation Follow-up!

(photo: hauling KC's bike to Alpine)

The radiation follow-up visit was interesting.

The big concern was this lingering cough, and of course, the fluid in the lungs...but the damn cough that wouldn't go away was just getting deeper, more painful, more forceful, just not fun.

Albert was complaining that when he coughed he felt like someone was jabbing him in the back, sometimes stabbing him with a very sharp object.  Additionally, sometimes he would cough so hard that he would pop his own back...talk about pa-in-ful!  OUCH!

So the radiation oncolgist decided to give him a steroid, since the fluid had just been drained, maybe it would give him just the right amount of strength to give his lungs a break AND all those muscles that were sore from coughing for 3 months straight.

THE ABSOLUTE BEST PART was when the doctor said he was gonna put him on steroids, Bert VERY straight faced asked the doctor..."but doctor, does this mean that I'm never gonna be able to compete in the Olympics?"  

This is the "god complex" doctor I told y'all about, plus he had 2 observing doctors from China and 1 PA from Australia in the über tiny room, both our kids and us...HE WAS SPEECHLESS!!!  It was priceless!!  (think...exam room the size of an elevator and a momentary AWKWARDness...7 adults all looking at the doctor waiting for an answer...)

Of course, I busted out laughing, and the doc was able to make a nice recovery, explaining the difference between anabolic steroids and what he was prescribing...it was really hilarious for that moment when all 4 professionals in the room couldn't tell if Albert was asking a real question, or just kidding...it was freakin' funny!!

To top it all off, when the doc said, prednisone, Albert thought he said, pregnizone!!! I can't imagine what was going on in his head at that moment...you said, preg- what???  LOL

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Fast forward to today...he's already tapering off the steroids and there is no cough to be found!!  

It's been A-MAZzing!!

Thanks for checking in...next time,  I'll tell y'all about the kids' first visit as patients!!

Chemo Follow-up!

(headed to work)

The CT scan revealed fluid in Albert's right lung (the one that is barely functioning because of the paralyzed diaphram).  This is a common side effect of radiation to the chest.

They drained the fluid using a needle through his back and into the lining of the lung...400 ml, almost half a liter!! The fluid was sent to the lab to be tested.

Within the hour, he was taking deeper breaths.

Hopefully this procedure will help him breathe easier and easier, cut down on his fatigue, and give him a shot at getting back to his trail running and 5K fun runs!

Everything else checked out great!  The oncologist is super happy with Albert's progress and overall health.  The cancer area and tumor still seem to show "no cancer activity" based on the CT and the labs!!!

This guy is a survivor!  

Strong, healthy and as you can see above:

he's been feeling well enough to ride to work...woohoo!!!!

Thanks for stopping in, and next time, I'll give you the radiation update.