Wednesday, December 2, 2015

Two Years Ago...

(pic: October 31, 2015)

Today is the two year anniversary of Albert's surgery (cancer resection).

On that day, December 2, 2013, we almost lost him.   His bleeding required several pints of blood.  The tumor was just too big, too invasive, too far into his heart.

The surgery was supposed to take 2 hours.  About 3 hours in, the nurse came out and told us that things did not go as expected.  She looked me in my eyes, at the verge of tears in her eyes, they were doing all they could for him.  And they didn't know how much longer it would take.

Five and half hours later, he had two large incisions, (a sternotemy on his chest, plus an unexpected horizontal one on his side), 4 broken ribs, a severed phrenic nerve, a paralyzed lung, a breathing tube, a chest drain, large portions of active cancer on his heart and was barely conscious BUT he was stable.  He made it.  The surgeons said they were amazed at his strength, his resilience, his will to live.

If they knew the extent of the tumor before they opened him up, they would have deemed it inoperable.  INOPERABLE.   It had invaded most of the right side of his chest cavity and was growing out and around to his back.  It was getting blood flow from hundreds, if not thousands, of blood vessels.  Every other organ on his right side was feeding this tumor.  It settled deep into his heart, kept steadily growing until it invaded his right atrium and had grown into the deepest layers of his heart.

The surgeons spent hours disconnecting this tumor from each and every blood vessel, one at a time, cauterizing  each by one.  They spent hours meticulously untangling, unraveling, severing the tenticles that reached out for oxygen, for blood, for life. 

They did all they could not to open the tumor.  But it was massive.  They compared it to the shape and size of a flattened football...weighing anywhere from 8 to 10 pounds.

It was impossible to get it all.   Chemo would hopefully kill anything that floated away or remained attached to any organs after cauterization.  Radiation would hopefully kill anything still attached to the heart...while trying NOT to radiate and kill the heart itself.

Radiation appears to have worked.
Chemo? Not so much.

So here we are today.

Two years later, preparing for the next resection.  A microscopic piece of that tumor stayed behind.  It has been living and growing on the outside lining of his right lung.  In between his lung and his back.  By this past February, it had gotten large enough to see on the scans.  By observing it and tracking it every 3 months, it has finally gotten to the point where they feel it needs to be removed.

It is still the original cancer, neuroendocrine carcinoma.  Which means that the chemo didn't kill it.

And yet, somehow, we feel lucky.

Lucky to be alive, but more than that...
We feel lucky that the original doctors didn't know how bad it was.
Lucky that he was so healthy and his body recovered so well.
Lucky that our friends and family stepped in and took care of us.
Lucky that Albert has a great job and great insurance.
Lucky that we have each other.

Lucky that we get to do this all over again...

Friday, October 2, 2015

Day 2: done!!

Bert started the day by repeating his bone density test.  On Monday, his bone density test had to be stopped midway because the images were cloudy.  Apparently, the contrast used in the CT scan on Sauturday was still running its course, and causing the images to light up in all the wrong places.  We were crossing our fingers that enough time had passed or else we would be spending another day there!

Yay!!  The radiologist said he could work with the images even though the contrast wasn't completely gone...and we were off to meet with the endocrinologist, the last appointment this visit!

The endocrinologist checks on Albert's MEN-1 disease activity.  (The thing that's causing all these tumors.)

AND the report was ALL GOOD!!!

His MEN-1 is stable right now!  The hormone panel (blood work) showed everything to be within normal levels.  His blood calcium was still a little on the high side of normal, but it wasn't elevated like it has been.  That's definitely great news because when his hormones start getting wacky, that is an indication that tumors are growing or developing.  Sometimes the tumors will be cancer and sometimes they won't, but it's nicer when they aren't there at all!

As an added bonus, two of his meds got lowered.  That's how great he's doing!

Overall, this visit was very positive and a great relief in so many ways!!  Now we can stop worrying about the 'what ifs' and breathe again.

Next step:  get rid of the pesky tumor on his lung!  

Thanks for checking on us!

Tuesday, September 29, 2015

Day 1--done!

The big news from yesterday's visit is:

We will return to do a biopsy and scans of the existing tumor within a couple of weeks.

And within a month from that visit, Bert will have surgery to remove the tumor.

As of now, that's the plan.  If something changes along the way, then we will go with changes as they come.

The crazy chaotic day yesterday was full of good news and expected news.

The good news is that the scans from Saturday showed no new tumors/areas of concern.  However, to be ultra cautious, he will have a repeat scan before surgery.  This octreotide scan is looking at activity within the organs AND will show more detail on anything that was too small to see on the CT scan.

At this time, the original cancer is not spreading...yay!!!!

The expected news is that the tumor on his right lung did grow.  It grew from 2.9 cm to 3.6 cm in three months.  So it's enjoyed itself for too long and needs to go!!  As mentioned above, the surgery will take place within a couple of months.

He has a team of three doctors that came to consensus on a plan.  We are happy with the plan and feel that all opinions/options were considered.  After all, we get the best of three brilliant doctors!!  We consider ourselves very, very lucky.

Thanks so much for sending us all that good mojo!!

Monday, September 28, 2015

September visit is finally here!!

September is finally here!!!

Wow, this past three months have been the L-O-N-G-E-S-T ever!!

The scans are all done, ready to get results today.

Cross your fingers, pray, bite your nails, cuss and scream, what ever you need to do, but please! send us good mojo!!

Whatever they tell us, we will handle it!  Together!

Tuesday, July 21, 2015

How you can help!

MD Anderson--Children's Art Program

Honestly, right now we are physically and mentally taken care of very well.

At home, we are taken care of.
In Houston, we are taken care of.

YET, as hard as it is to say, medical bills are starting to overwhelm us.  I hope I don't sound ungrateful for all the help we are already getting.

Family and family-like friends are taking care of our dogs and our house and what ever else we need on an ongoing basis.  Our Mom-like friend provides us a home away from home for every visit, every treatment, every time. Albert's medical days were donated by his generous co-workers.  Truly, we are blessed in the amount of help we have recieved from our support system.

THANK  YOU for all the ongoing support you have given us for almost two years now.

Many of you ask how you can help us...and it's really hard to say we need help paying for all this fabulous cancer care.  Albert's insurance takes care of the vast majority, but there are still charges we are resposible for, even after the co-pays and monthly payments.  Somehow it still racks up and stacks up!

How can you help?

If you would like to...
If you are able to...
If it does not create a financial hardship for your family...

...please consider throwing a few dollars toward Albert's MD Anderson account.

please send help directly to:
MD Anderson Cancer Center
PO BOX 4461
Houston, TX 77210-4461
MRN: 1046895

Thank you so much for checking in on us.

The JULY visit...quick summary

(self pic: dressed for CT Scan on Sunday)

The July visit was supposed to be short and sweet; it turned out to be long and bitter.

Sunday: Scans and Labs...and free valet
Monday: visit oncologist
Thursday: visit radiation oncologist


We caught the wave of CANCER in our faces on Monday morning.  Totally caught off-guard.  I don't know how though, because that is what we are doing there.  Looking for cancer.

Maybe caught off guard because we are at the check-up that looks at the chest and heart and previously radiated areas.  We even expected previously identified tumors to be growing.

But we didn't expect any NEW tumors.  (blind hope, i guess)

Yep, it's 2.9 cm, in the lung lining (pleura) on the back of his right lung.  Where he has been experiencing LOTS of shooting, intense pain. (the already poorly functioning one)

We drove home on Monday; frustrated, angry, fearful, contemplative, empty.

We had to wait until Thursday to get the second opinion from the radiation doctor.

Except that on Thursday morning, we got up LATE and had only enough time to get there in the nick of time, if there wasn't any traffic (IN HOUSTON). Late? really?  We wanted to leave at 8, after we fed the dogs and had our coffee.  We opened our eyes at 9:30!

We were one minute late...even with Bert driving!

The radiation doctor and the primary oncoclogist from Monday did a conference call to try to figure out what to tell us.

The verdict:

Yes, it's cancer, yes, we can treat it NOW.  B-U-T...

BUT, they recommend we wait.  

WAIT until September.  WAIT to see if this is the only one, or if there are more COMING.

WAIT to see if it is metastasizing, IF SO, we will see the activity by September.

WAIT to see if we can make the best treatment plan possible, with more information.

We drove home on Thursday, numb.

AND so now we WAIT... until September, mentally tallying how much time is left.  Vowing to: Make every day count.  Live every day as if it was the last. 

EXCEPT THAT he's tired.  and has no energy.  and uses all he's got just to get through each day.  and is fighting.  and is fighting hard.  and he's tired.  and has no energy.  

AND he's got me.  and his kids.  and his dogs/house/job/tumor growing inside him/death sentence to worry about.

AND YET...  every morning HE IS THANKFUL for another sunrise...because he's still winning the fight, loving, working, tired, bowling, exhausted, watching NASCAR, in pain, being loved, and LIVING!!!


Wednesday, July 8, 2015

the Madness continues

(Pic: stolen from the Internet)

Well, another MD Anderson visit has come and gone...and I haven't even caught y'all up on the previous visit.

I guess that I will do that as I talk to you about the latest.

In a nutshell, the visit was not the happy, cheery, news that we've been sharing for a while now...

It's cancer.

It's new cancer.

It was expected, but it's still cancer.  

AND is has turned our world upside down, once again.

We've been talking about wills and insurance and plans for when he's gone.

It sucks.


Wednesday, March 25, 2015

Primary Oncology Check-up

(MD Anderson Cancer Center has lots of comfy places to chillax between appointments)

We met a new PA yesterday.  He was knowledgable, thorough and extremely soft spoken, which is very comforting.  Unfortunately, the thing that stuck out the most for us was the fact that he reminded us both of a character from the Harry Potter series.  Remember the head goblin at Gringott's Bank?  Well, this could have been his giant twin brother!!

The primary oncology doctor (another one of our ab-fabs) came in and reported that everything looked good on the CT scans within the limitations of his cheap computer monitor; however, once the radiologist had a better look at them with his fancy- dancy monitor he would feel better about his own observations.

So without further ado---there is NO CANCER ACTIVITY at this time.

Yay!, another quick appointment; pleasant and positive.  
For future reference he did let us know that if the cancer should return within the next year or so, Albert is eligible for a clinical trial that is taking place at MD Anderson.  And since a successful cancer treatment does not usually work a second time, it's reassuring to know that he has an Ace in his back pocket.
 More clinical information:

This check-up was for the original tumor that destroyed Bert's thymus, grew into his heart, and eventually lead to surgery and loss of function in his right lung and diaphram.

Remember that the original tumor grew to about 10 lbs and he named it Walter White.  The doctors in Austin were able to cut out most of the bulk of the tumor, but weren't able to get it all.  A big chunk of the thymus tumor grew inside of Albert's heart and is still there.  

Last Spring and Summer, he went through radiation and chemotherapy to kill any cells that escaped during debulking surgery and attempted to kill any cancer that was living on the part they left on his heart.

According to all the tests so far, the radiation and chemo worked!  It killed the visible cancer cells.

But since there is still tumor tissue, they have to keep checking that the cancer cells don't start growing again within that same tissue, which sometimes does happen.  Occasionally there are some cancer cells that actually live through radiation and chemo, but are so small, they just can't be detected, even with their high-resolution microscopes.

No cancer activity at this time means that as far as they can tell from blood work and pictures of the tumor/heart, the tumor tissue is just sitting there; not growing, not shrinking, just sitting.

And that is a very good thing!

Thanks so much for stopping by the blog today!

Endocrine check-up

( pic from: )

Can I start off with an AMEN!?!?!

I love me some Dr. Habra!!  He is an amazing doctor!!

His first comment to Albert was..."You look great".  He stated that compared to the last time we saw him, last summer, Albert was looking tired and haggard, but this time, he looked sooo much better.

Think about it!  How many doctors would remember how you looked 9 months ago?

Albert was very impressed and happy to know that this doctor took that much time to review his previous notes and jot down enough detail in his notes in the first place!  MD Anderson does a great job of acquiring superb doctors/nurses/staff.

All in all, the preliminary lab results showed that everything was looking great and the doctor was pleased with Bert's progress.  More detailed lab results would be available after the visit AND the bone density scan was also scheduled for after, but Dr. Habra was very happy with Albert's overall status.  If anything of significance comes from those data, we would be hearing from him, but then again, we always get the actual written reports from every procedure.

It was a quick, but very pleasant and positive appointment.

We are so lucky to be in such a wonderful cancer center.

Thanks for checking on us!


More clinical information:

The Endocrinologist is checking on Albert's MEN-1 disease activity.  Multiple Endocrine Neoplasia, Type-1 is the syndrome that is causing the tumors throughout his hormone system.  

Remember that this syndrome is a very complicated and very rare disease that is inherited.

It has a knack for affecting most patients in the parathyroids, the pancreas, and/or the pituitary gland.

Albert's disease chose to first present in an even rarer spot, his thymus (cancerous: Neuroendocrine Carcinoma).  Additionally, he had more traditional symptoms including: an enlarged parathyroid (non-cancerous: Adenoma) and still has a very small growth on his pituitary gland (non-cancerous: Prolactinoma).

The most effective, least invasive way to keep checking on these tumorous areas is to monitor Bert's hormone levels.  On three month intervals, we are specifically keeping track of his ParaThyroid Hormone (PTH) and Prolactin hormone activity.

Of course, all of his hormone levels are tested, but these hormones are very important indicators for the tumors that are already active in his thymus, parathyroid, and pituitary.  These are what I refer to when I say: disease activity.

And then it gets more complicated!!

The thymus tumor grew into Bert's heart.  So even though the tumor is still there, the radiation and chemo knocked out the cancer last summer, hopefully forever  (his primary oncologist checks on this one today).

One parathyroid has already been removed, but he still has 3 more.  When these are producing too much PTH, they also trigger his bones to release more calcium than they should.  The calcium leaks out of the bones and into his blood and eventually out his urine.  The problem with that is that our bones need their calcium!!

Yay!  Albert's blood calcium was at the high end of normal.  BUT it was still normal!  On its own, without medication.  YAY!!

The bone density scan yesterday will let us know if his spine (osteopenia) and hips (osteperosis) are improving/staying the same/deteriorating.  We will get those results in the next few days.

The PTH results should also be in today, but weren't available for the actual doctor visit.

In addition to checking his prolactin, they also check Bert's testosterone levels.  When the prolactin shoots up, the testosterone tends to drop.  By checking both hormones, we can keep better track of any problems as early as possible.

Dr. Habra will only scan his pituitary yearly to avoid any potentially harmful effects from too many MRIs. His next scan is already scheduled for September.

You actually made it to the end??!!??  I am very are a SUPER follower!!

Tuesday, March 24, 2015

Valet Parking

(pic this morning, after much needed rest)

After the visit with the endocrinologist yesterday, we had ONE thing on the brain... C-O-F-F-E-E-E-E-E!

We signed in at the hospitality center to get our complimentary cup of joe and cookie (breakfast) then headed over to the observation solarium to find a comfy chair and phone charging station for a little relaxation before the ride on the trolley.  The bone density scan was next and we needed a re-charge to get through it.

As we sat there enjoying our piping hot coffee and peanut butter cookie, we watched the valet parking team in action below us.  The window washing team was harnessed in and washing the windows above us.   As all around us, fellow patrons slept in recliners, read the paper, talked on the phone, assemled puzzles, visited with each other and/or played on their electronic devices.

The valet dance below reminded me of our VERY FIRST visit here.  Each driver intently following the wildly gesturing arms of the attendant, wanting to follow their instructions, but can't help but be confused by the movements that are similar to an airplane tarmac.  I think somehow the attendants here could benefit from a couple of  flashlights with long cones attached to the top to improve visibility.

As each person debarks from their vehicle, I sense their tension.  Valet parking is complimentary for the very first visit at MD Anderson.  Our first arrival felt as though we had happened upon a luxury hotel.  They helped us with our bags and made us feel welcome and comfortable; each casually providing directions or assistance as though they lived to help you.  It helped melt away that tension and we felt like we were in good hands, finally.

The patient is generally in the passenger seat, requires more assistance, and has the look of fear in each of their faces.  Fear of the unknown mostly.  Wondering what the visit will bring, whether it be answers or just more questions.  Sometimes, patients receive an expiration date, some a miracle, or still others, like Albert, get smiles and reassurance that no matter how long or short he lives, he will be in good care until that time...'taken care of'.

Although our coffee break was short, it was exactly what we needed!

The bone density scan was quick and relatively painless.

What we needed after that was S-L-E-E-P!  and that is precisely what we did for the rest of the day!

Next, I'll let you know what the endocrinologist said to Bert, it was priceless!

Thanks for checking in!

March 2015 visit to MD Anderson

Aaand, we're back!!

It's time for Albert's 3 month check-up and we started this morning bright and early!

Driving in to our friend's house last night felt like old times.  It took me longer to pack up and leave the house and it seemed harder to get the puppies ready for their extended stay without us.  Maybe I've gotten out of the practice?

However, once we arrived, it was like we were home, away from home!  Our friend welcomed us last night with: "My casa es su casa!" and she REALLY means it.  Even the cozy bed was calling our took less than 5 minutes for either of us to pass into our coma-like slumber once our heads hit the pillows.  It truly is amazing that we have such a wonderful place to call home whenever we are here for Albert's visits.

We will be eternally grateful.

The past few months have felt long.  It's hard to explain, but we have been in some kind of 'funk' while Albert has been working long and very weird hours; yet it feels like he has been home more than ever.   We have both been exhausted even though we rest more than usual.  We have not really done very much, but feel completely overwhelmed at the same time.  

As the visit begins this early morning and our bundle of nerves comes to its climax, we sit here waiting anxiously for Albert's name to be called and for this whole process to bring us what it brings, so that we can gratefully chew upon new nuggets of information.

Thanks for checking on us!

Sunday, January 25, 2015

Super Sunny Sunday!

This about sums up this month!

Those red socked feet are mine and I'm surrounded by fur.  Those boots and that beer completely update you on what Albert's been up relax!

Honestly, this month was a big chunk of doing almost nothing.  A friend of mine helped me see that we spent so much energy getting to the one year mark for Albert, that we didn't plan on what we were gonna do once we reached that milestone.  

So maybe the month has been reflective...coming to terms with our new normal.  We've discovered that our new normal includes LOTS of recovery time.  

Do a   Eat a   Take a  Take a

Everything takes so much more energy and focus than it ever did before.  Forget things like yardwork or projects around the house.  Since Albert hasn't stopped working full-time, getting through the day is the big goal.

That being said, today was a super sunny Sunday!  It must have motivated my guy because he totally surprised me by working on some shelves for my office/guest room.  Using materials from the abyss, AKA, the garage...he fabricated some shelves and removed the existing contraptions I had in there.

I'm sure he completely wore himself out but I was so completely thrilled with his usual workmanship and attention to detail!  

YES, my walls are currently orange...left over from the son's decor...but they will soon be some shade of froggy green...very soon!

Now he's spending the rest of the evening watching the winter X games and ProBowl football...surrounded by furry pets, of course!

Thanks so much for stopping by and checking on us!

Tuesday, January 6, 2015

2015! Wow!

January's not too late to say "Happy New Year" everyone!

The holiday season brought a whirlwind of crazy for us.  AND lots of great quality time with friends, family and making great memories.

This week I've been focusing on getting back on track:

-Medical: Both of us need to re-focus and take better/more care of ourselves.
-Financial: I'm finally ready to re-focus on gainful employment.
-Enviromental: Get our home back in shape.
-Spiritual: Renew our spirit by giving back to our community.

It kinda sounds like new year resolutions, and I guess they are in a way, but we've been living day-to-day making new resolutions daily...sometimes our only resolution is to get through the day.

Right now, we are focusing on making visit-to-visit resolutions.  Planning our lives in 3 month increments.  For the first time, in a long time.

If feels wonderful~dare I say~back among the living!

Slow living, but still living.

Albert is adding a new doctor to the list.  A lung specialist. We hope to get him/her into the rotation when we visit MD Anderson in March.

Thank you for reading, commenting, and supporting our progress!

- becca