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.

-Becca

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!!!

-Becca 

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.

CANCER SUCKS!

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:  http://faculty.mdanderson.org/Mouhammed_A_Habra/ )

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!!

THYMUS

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).

PARATHYROIDS

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.

PITUITARY GLAND

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 impressed...you are a SUPER follower!!

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 names...it 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!