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

Next Section

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

____________________

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.

Endocrine Assessment- Part 2: Blood Calcium

(pic: Bert and KC having a beer at Harry's in Alpine!)

Now it's time for a story...

Most of you are aware that MD Anderson is a teaching hospital.  So the normal process is that a Physician's Assistant will come into the room and go through the visit as though they are the primary doctor.  Ask questions, examine the patient; the whole nine yards.

Then s/he will leave the room, have a briefing with the doctor, and we don't see them again.  Sometimes never, because the PAs are transitional as they are still basically in school.  Later, the 'real' doctor enters the room and we start all over again. 

Most of the time, the PAs are spot on.

This time, she couldn't have been more wrong.  Albert's doctor came into the room and basically said...yeah, whatever she told you...DON'T DO IT!

It almost felt like we were being punked and I swear we must have been on candid camera, because he had an urgency when he told us.  I had him restate his words and so did Albert...it was so weird.

Then we asked him a million and three questions because we were sooo caught off guard.

Even his side-kick student (the one that is not allowed to speak, but only observes), was looking surprised by what the PA had told us.

Basically, Bert is being taken off of some meds to see what his body does on it's own.  With the meds his blood calcium is perfect...the doc wants it to be perfect without meds!

Never a dull moment!!

Thanks for checking in!  

Endocrine Assessment- Part 1

Our current mission is to manage Albert's MEN-1 (Multiple Endocrine Neoplasia-Type 1).

For the next six months, and the REST OF HIS LIFE, we are monitoring disease activity through symptom awareness, frequent blood work and periodic scans (CT and MRI)

Remember, LEAST INVASIVE is always the preferred treatment!

_______________________________

Let's go back to the pituitary tumor we told y'all about this summer.

________________________________

Tuesday's labs indicate that the pituitary tumor is a prolactinoma.  (an adenoma that is producing the hormone, prolactin)

The only reason they think it is a prolactinoma is that his prolactin level is infinitesimally elevated; barely out of normal range. AND there are no other hormones out of normal range, so this is a theory based on experience.

If this tiny tumor is producing prolactin, which is not needed, Albert's testosterone level will drop.

BUT THAT'S NOT HAPPENING HERE!!  His testosterone level is excellent...and honestly, I didn't need a lab test to tell me that!! LOL

**Treatment**

TIME WILL TELL

They will do more lab work in December to see if there are any hormone level changes AND they will re-scan the tumor in early Spring.

The good news is that the tumor is NOT affecting his parathyroids and PTH production like previously suspected.  More on that later, but for now, it's good news.

Thanks for checking in with us, we are truly enjoying our family time...

MEN-1

(pic: Kasey's 'new' Honda Rebel, AKA: Graduation Gift)

Back in June,  one of the results I neglected to share is the genetics research on Albert's DNA.

His DNA has been traveling for 7 months; across the country, then out to Sweden and back!!

The reason he is getting all these tumors (thymus, parathyroid, and pituitary) has been detected/confirmed.

He has a syndrome called MEN-1 (Multiple Endocrine Neoplasia-Type 1).

MEN-1 is NOT CANCER.  However, it causes tumors to develop throughout the endocrine system.  Sometimes the tumors are innocuous, sometimes benign but troublesome, and sometimes cause cancer.

About now, you may be asking: How on earth did he get that????

I'm soooo glad you asked!!!!!

He got it in one of two ways:

     1. genetically from one or both parents

OR

     2. he has a first generation gene mutation that occured in utero (while he was in his mama's belly).

The only way to know for sure how he got it is to have his parents and siblings tested for the same gene mutation.  The family has the option to be tested. (simple blood test)

The scary part for us is that since he has it, our children have a 50% chance of inheriting it from him.

The kids are here with us this week because they are getting their turn becoming MD Anderson patients.  They were assigned to the Endocrine Center for genetics testing.  By simply giving blood samples, a whole battery of tests can be run to determine if either of them inherited the genetic mutation, AND if so, determine if they have any indications of possible (and hopefully early) disease activity.

Remember, MEN-1 is NOT CANCER.  However, if either of the kids does have the syndrome, we will be able to proactively and aggressively prevent lots of problems!  Through routine blood work and occasional  scans, we will be able to address anything that comes up, while it's still small, before it becomes a bigger problem.

For more information on Multiple Endocrine Neoplasia, please visit the MD Anderson Website: 

http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/multiple-endocrine-neoplasia/index.html

I think we are all caught up from the June visit...let's move on to the here and now...

Back in Houston!

Back in Houston, but this time...with our sweet kids!

Today was a doozie...started at 4:30AM, and just kept going.

Snuck in some family time and a movie!

Today included a head to toe CT scan and labs, meeting with the endocrine team, and setting a schedule for the next few months.

Apparently, I stole the show when I fell asleep in the waiting room during Albert's scan.  According to my daughter I was causing a scene as I was sleeping in a recliner so soundly,  that I was snoring with my mouth open...LOUDLY...and causing people to stare.  A kindhearted nurse took pity on me and covered me with a warm blanket.  I subsequently began to snore LOUDER!  All I know is that I had a pretty good and interesting dream.

Unfortunately, Albert's day tuckered him out and he took an afternoon nap while the kids and I did our grocery shopping.

He woke up this evening, worked, yes, I said WORKED, then passed out again, not too long ago.

I'll let y'all know the medical stuff tomorrow, I'm wiped out as well!

Nite-nite and thanks for checking in!