Checking the oil...

This past Friday, Albert gave another two vials of blood.  The endocrinologist is just checking his oil...making sure the viscosity is adequate.  (Did I carry the motorcycle metaphor too far?)

So Monday is our big day!  Bert will do a couple more tests on Monday morning here in town and then we head to Austin for the first oncology meeting.

Now we get to hear what some true experts think!

Keep those prayers going, we gotta make sure those doctors have a good solution for us!  Or at least some viable options!

TTFN!

The bumpy road!

Wow! This week has been a roller coaster ride.  And I DETEST roller coasters.  I always convince myself that my coaster car will be the one that flies off the rail.  My harness is the one that is faulty.  I will literally die from fright.  I simply avoid roller coasters at all cost, even the ones made for kids.  It's a fear I just won't face!  

Unlike amusement parks though, life's ride is not a choice.  We must ride, the only alternative is death.

We are blessed with beautiful children!

We are blessed with friends and family!

We are blessed with abilities, creativity, knowledge, aptitude, compassion, humor, and love.

I consider those the UPward part of the ride.  The things that make us smile and laugh and feel warm and loved.

Yet, for every up, there is a down.

Thoughts have been the DOWNward part of the ride we've been on this week.

For every negative statistic, there is a story of someone who has beaten the odds.  Their will for life won the war.

For every outlandish story of alternative treatments and miracle cures, there is death.  Someone for whom the treatment was not effective.

Our story is only now unfolding.  Our road ever so bumpy at the moment.

The advantage of knowledge and research is full disclosure.  Making decisions with both eyes open and feeling confident that those decisions were made to the best of our abilities.  Every effort was made to consider the consequences of our actions and inactions.

The disadvantage is full disclosure.  We don't know what we don't know.  We can't plan for what is already planned.  

Albert and I are not religious.  Most people that know us, know that.  But we are both VERY spiritual.  We believe there is at least one God, but who knows, there may be many.  We believe knowing that we are not alone is what is important.  There is a bigger picture that we are a part of.  Some call it destiny, fate, God's will, karma...whatever our future holds...may not be in our hands.

Albert believes that God's not done with him yet or else he wouldn't have made it through that cold Monday, December 2, 2013!  Here he is!  Alive, with me!

And being content with that is what we have, for today.

We don't know what tomorrow will bring.  But did we ever really?  Of course not!  So why does it feel so different now?  Why does uncertainty feel so much stronger when our eyes have been opened and we no longer have the luxury  of taking time for granted?

Wow!  This ride!  I'm hanging on for dear life!

The blessings continue!

We continue to be blessed with visitors and helpers and WONDERFUL food!  Our emotions have been mostly high throughout our journey; however, it's only natural that spirits will dip when the odds are against us.  Your friendship and support is our lifeline.

We continue to be hopeful and have been exploring options for treatment.  MD Anderson called today requesting more documentation and we are taking that as a VERY GOOD sign.

Albert's doctor's visit today was a bit scary.  His blood pressure continues to be well off the charts and continues to concern the original endocrinologist on the case.  So she has ordered an extensive lab work up and pulled 9 vials of blood for tests.

We have been living day-to-day with each new surprise we've encountered.  It was 'funny' to watch the doctor's expressions (or attempts at concealing her expressions) as we updated her on what has happened over the last TWO weeks!

It's a lot!  It's crazy!  Especially when you say it out loud, in clinical terms!

Albert is AAAAAHHHHH-mazing!!

Feeling hopeful...

The heart doc BANGED on Bert's chest to make sure it was healing!!!  And it held up!

The hurdle at the moment is getting used to his newly reduced lung capacity and operating on only one diaphragm.  So walking daily and using stairs will help expand and deepen his breathing.

He is cleared to start working from home next week, boo!  Plus, he's back to work, week after Christmas!  Of course, he needs to keep things slow and easy, but at this point he really needs to start thinking of other things, get back in the game, and feel somewhat normal again.

We are waiting to hear back from both oncology teams and are anxious to begin the next leg of the journey.

I personally believe that Albert and I are now operating on the same speed (so that must of been the reason for this turn in our lives).  Since we both got pushed off that hamster wheel, we both were reminded to enjoy the simple things, the important things, and each other!

TTFN!

The boys...

Albert and WizKha Lifa chillaxing on the sofa.

Things are falling into place...

So tomorrow we have another follow-up, Albert is hoping to get cleared to work from home, boo!

We found an oncologist that comes highly recommended, his office is in Austin and he is with Texas Oncology.  (Heard good things about them as a group.)

We also got entered into the MD Anderson hoopla.  We should hear back, hopefully in a week or so.

Things are looking up and falling into place, the big guy is still taking care of us!

MANY thanks to all the visitors!  Staying at home day after day is a hard thing to do, but visitors are really helping cheer the place up!

MANY thanks for the meals and other help from the care calendar and others who just drop by.  We are feeling the love!

It's funny that Albert will tempt everyone into seeing his scars!!!!

Good news, he walked a mile yesterday! Came home exhausted so it must have been just right.  (Good thing I made him turn around at half a mile, he wanted to keep going!)

Love y'all!

-becca 

Research...

I've been researching doctors and gathering recommendations.  By Tuesday we should have a doctor scheduled...wish us luck!

So onward with the research...

What do you think of alternative medicines?  Chemo?  Radiation?

The pathology report is in.

Albert had a follow-up with the endocrinologist and she gave us a copy of the pathology report.

The parathyroid that was removed was confirmed non-cancerous.

It also confirmed that the type of cancer that was left on his heart is extremely rare and is fairly aggressive.

It appears to be stage 3 and is also in his lymphatic system.

None of this is very optimistic, but our next step is the gather as much information as possible before moving forward. 

Tomorrow my mission is to find an oncologist and make an appointment at MD Anderson in Houston to get their opinion. 

The oncologists will let us know what all this really means and what our medical options are.

Thanks for all your kind words, we really need them right now when we are both exhausted and feeling down.

(((((Hugs)))))

-becca

If you would like to help:

For everyone asking, the care calendar is up and ready.  Mostly we need meals and some occasional help here and there.  

WE TRULY APPRECIATE YOU!

The site is at www.carecalendar.org.

Albert's calendar is 167807

The password is: thanks

-Becca 

Yay for Sunshine!!

Yay!  The sun came out today!!  Poor Albert has been having to walk inside the house 'cause it's been so bleepin' cold lately!  Today I thought we would be doing good if Albert could get to the mailbox.  However, he just zoomed on passed it!  

And then a blast of cold air hit and we both spun right around and walked back!

He is looking like a million bucks!!  

Now that he is exiting the doped up phase of recovery, he really is doing pretty well.  His appetite is back and he's even feeling up to snacking again!  He enjoyed watching the recent obliteration of the Cowboys, GO BEARS!!

I suspect that my days of doting on him are limited!  He's been moving around and grasping for things, testing the limits of his new reach.

I also suspect that he's ready to see new people!  So if you've been waiting for the OK to visit, it's in print... It's OK to visit!

Thanks to everyone who has helped feed us!  I thought I was taking advantage by asking for help, (partly the care calendar delay) but I have truly appreciated how much it really helps!

It's been taking all my energy to keep up with meds and meals, it has been very nice to just warm things up and not have to cook from scratch!  GOD SEND, more like it!!

The pain is getting bearable, even while adjusting the meds and I think we are both getting past the shock of the second incision.  It's tremendously limiting his movement, but he is moving more every day.  With rehab, it should just be a matter of time before he is back in the gym doing bench presses!

I've been researching the scientific function of the body to understand his prognosis, and the only way to understand it, is to accept that our bodies are MIRACLES, daily miracles!

The way the body compensates for losses is truly fascinating!

He has his first follow-up on Thursday with the surgical endocrinologist, we will update if anything new develops!

Love y'all!

-Becca 

Sleep, it does a body good!

It's been a couple days and it's amazing what lots of good sleep will do for your body!  

Albert looks incredible!  Like normal again!  He's walking faster and doing most things in slow motion.

The side incision was HUGE and explains the tremendous pain that is lingering.  

His chest pain has been a lot more manageable.  Go figure!

He's getting better, bit by bit!

The next step will be to get the pathology reports into the hands of an oncology team.  Once those experts give their opinion, we will let y'all know the next step in our journey.  It will take a few weeks.

Thanks for all your love!!

P.S.  The care calendar will be posted soon!!  

Home Sweet Home

The overall theme last night was SLEEP for everyone!  

Albert seems to be getting more peaceful, deeper, and longer sleep here at home.  He's spent the day alternating resting, sitting up, and walking around.  He feels like he's got alotta sleep to catch up on!

I am so thankful that I'm at home and done commuting.  Even I got some sleep last night!

We are gonna focus on getting Albert's strength back and hopefully he'll also get some energy soon.

All in all, I think we are on the right track!

TTFN

Vacancy at the hospital!

Albert has left the building!!

We are headed home on this cold, blustery day...feeling that cold wind on our faces reminds us that we are ALIVE! And we are BLESSED! And we have EACH OTHER!  And we have a long, bright future surrounded by LOVE!

Tada!

And just like that!  Albert's on his way to the next step...going home!

Today was a challenge.  He was on and off oxygen.  He had trouble finding a good dosage of pain meds, they either didn't numb the pain enough or they caused him to be super dizzy and loopy.  He attempted to balance getting enough rest with getting enough exercise.

The treatment is focusing on him being able to manage pain at home and still function.  The key is to dull the pain enough that doing other things becomes bearable. 

Great day of visitors!

And speaking of visitors...Albert is scheduled to go home tomorrow.

I have no idea when he will go home, I'm putting money on afternoon traffic hour.

So if you will please, let me get Albert settled in on Friday evening so we can accept visitors starting on ySaturday?  I feel mean saying that but truthfully it feels like too much pressure to deal with.

So give us time to sleep in and get our coffee, then stop by on Saturday.  We will be home for the next 2-3 weeks, so you will have lots of opportunities to see for yourself that Albert is truly strong and amazing!

Watch Kasey's concert with us!!

Tonight at 7:30 PM

Kasey will be singing with the Sul Ross Music Department in the Choir Ensemble.

Here is the link to the live stream video:

http://lecturecapture.sulross.edu/Panopto/Pages/Viewer/Default.aspx?id=67aff0d0-45fd-4a98-a579-d412eb6d477a

Prepping for his next 5K

Bert is up and about, making his rounds at the hospital, and is trying to sign up for his next 5K!

He's also talking about joining a Relay for Life team.  Let us know if you have a team!  We'd like to join and walk it!

(((Hugs)))

Going Tubeless!

Yay!  No more tubes!  He is back on oxygen since they removed the chest tube.  But not for long!

This is his fabulous endocrinologist giving him clearance to go home tomorrow!

Yay!

You gotta walk before you can run!

Albert got lots of rest today, which was much needed!  He's graduated to simply breathing the oxygen that you and I breathe.  He's not getting that fancy bottled oxygen anymore!  Plus they removed the big, bubbly, loud machine that he hated!

Eagerly, he took his first "official" outside-of-the-room walk today!  It completely wore him out but said he felt somewhat human for a little bit!  

I left him this evening resting and listening to his soundscapes!

We are hearing more chatter about sending him home on Friday, dependant on various determining factors.  We'll see.

Apparently hospital food sucks.

Lastly, the zebra cancer ribbon above is in support of neuro endocrine cancer awareness and education.

-TTFN 

(OMG! I do love that Tigger text before it was cool! LOL)

😘

Leaning into the turn!

They say life is a series of twists and turns.  When you learn to ride a bike or a motorcycle, you learn that you must LEAN INTO THE TURN or else you fall over.  Even as I was learning to be passenger on Albert's motorcycle, he needed me to lean with him every time he turned.  I think the 29 years we have been together have prepared us for the sharp change of direction our lives have taken recently.  Thanks for being part of this amazing ride called life!

On a side note!

(2:00p) Jake is getting a real taste of government bureaucracy...more delays...they need more paperwork before he can enlist! 

Full Throttle...

(10:30p) Albert is sooo ready to get out of his stylish circulation socks and open-back hospital gown!

We saw both doctors today and they are both amazed by his strength and speedy recovery.  The cardiologist said that his progress is "remarkable" and the endocrinologist said that he's recovering "much faster than [they] expected".

He is ahead of schedule on almost every goal and on schedule with everything else.  He woke up quicker, got them to take out the breathing tube sooner, skipped the liquid diet, and is now running full throttle; working on mobility.

The doctors asked him to let them know when he thinks he's ready, they make sure he is, then they move on to the next step in recovery.  The key is not to lay in bed feeling pain, but to keep moving.

He is joking and in great spirits.  His tumor now has a name:  Walter White!  Told you he's feeling better!

We both got a long nap this afternoon and when we woke up, we went through the blog comments and well wishes from all of you guys.  We are truly enjoying reading your comments, offers, thoughts, and prayers.  It puts a smile on his face, and of course, tears in my eyes!

His appetite is returning, he even ate his cookie after supper AND some of my tater tots!

I left him in great hands this evening and decided to take it easy tonight and spend some time with Toby and Maya.  They are great cuddlers!  They both think they are lap dogs!  They are used to their frequent naps with mama so I think they are very happy to have me home.

Thank you so much family and friends who have been taking such good care of all of us!  Commenting on the blog, visiting, and making sure we all remember to eat!  I didn't know how much I needed you!

Take care and good night, I'll update again soon.

Room Service!!

(1:30) He's in a room!!!  

Sorry the breakfast post didn't show up earlier...oops

Now the goal is to get all these tubes out!!!

Brrrreakfast!!!!

(10:00) Albert is sitting in a chair eating breakfast!

He is still in icu, pretty dizzy, but very hungry!

The goals for the day:

1. Pain management!

2. Mobility

3. Get to a regular room

He's doing great! 

He's awake!

Just saw Albert!  He looks like crap, but he looks amazing all at once!  Very bright eyed and alert!

While I was out for the evening, he had his breathing tube removed and is talking.  He's still in icu, no word yet on when he will be moved to a regular room.

 KC is on the train, safe and sound.

Jake is home getting ready for his big day tomorrow , enlisting in the Army!

We have gotten lots of offers for help and are so blown away by your tremendous show of support!  

One of my friends is organizing a care calendar and, if you are so inclined, you can help in lots if ways by signing up.  I will let y'all know when it's up and running.

We are focusing on getting him mobile and home, so we will need the most
help once we get him outta here!

Love you all!

The surgery is over...

(3:30) Well the surgery is almost over but the news is not very good.

Bert is being closed up right now by the cardiologist.

The tumor was the largest they have ever seen.  They estimate that the tumor was 10 or more pounds.  It invaded several areas of tissue including part of his pathway for breathing on his right side.  They estimate that this tumor has been growing over a period of years.

The thing that is the most worrisome is that the tumor invaded his heart wall.  They were not able to remove it completely without compromising his heart.  If it wasn't cancer, they would have opted for a heart transplant, but since it is cancer, he would not be eligible to receive a transplant.  Instead they left a sliver of the tumor that is attached to his heart.

The follow-up will include radiation and chemo to treat what they left behind.

The parathyroid removal was quick and without incident.

Once the surgery is complete, he will be taken straight to the icu, kept on the ventilator, and will be sedated through the night.

He should be able to rest through the night and put into a room at some point tomorrow.

His lung was not impacted at all.

I am headed home and will return to the hospital after I drop Kasey off at the train station in the morning.

If anything changes, the dr and/or nurse will call me.

 I will post if I hear anything else.

And it continues!

(2:45) The surgical nurse came out and let us know that the surgery is taking longer than expected, it's bigger than expected, and very close to his heart.  

He is not in distress and both doctors are working together to get it all out.  It will be a while longer!

Will update when we get more info.

And so it begins!

(11:14) Albert went into surgery at 11am, it should take about 3 hrs!!

The time stamp is two hours off...

Playing the waiting game!

Still waiting to get started.  Apparently the surgery before us ran long, so they are cleaning the OR and it will be at least another hour from now!!!

Ready, set...

All checked-in!!  Ready to go!

The big day is tomorrow!

Yikes!  Now we are both crazy nervous!  The surgery is in the morning and Albert is packing his bag for the hospital stay.

You all are asking how you can help, but honestly, I just don't know!  I love that you all care so much and please know that I will holler loudly when I figure out what I need!

We are headed to bed to see if we can even sleep a wink, we are leaving the house at 6 AM!  He has to check in at 8:15.  We are not sure how long it will take, but I will use this blog to keep posting updates.

Make sure you subscribe so you get the updates! 

Also please share the link with friends and family!

Love you all!  Nighty-nite!

The "short" of a very long story!

It all started this past Spring.  Albert and I went to see the dentist and our dear friend and hygienist, Stacy, refused to treat him because he had such HIGH blood pressure.

Shock!  For decades, he has had low blood pressure, never high.

Friend to friend, Stacy advised me to insist that Albert see a doctor THAT day!  So he saw an available PA and was put on high blood pressure medication immediately. 

The second blip?  Initial bloodwork showed elevated blood calcium levels.

Follow-up: changed medication to include diaretic in high blood pressure meds.

Follow-up: blood calcium levels elevating, not dropping.

Next stop: endocrinologist!

Great endocrinologist, really like her!  She immediately changes Albert's meds to stop the diaretic THAT DAY!

Diagnosis: hyperparathyroidism.

Dr ordered: ultrasound of throat and neck area, 24 hour urine collection, complete lab work, bone density test.

Follow-up and diagnosis:  further elevated blood calcium levels, osteoporosis of the spine, osteopenia of the hips, need surgery to remove the haywire parathyroid, and need a radioactive scan to find the parathyroid in question.

Next stop: surgical endocrinologist!

OMG!  Love her even more!!!!

Dr ordered: new scan to get much better picture of area and identify the malfunctioning parathyroid.

Follow-up:  found the parathyroid!  AND SOMETHING ELSE!

Next stop: biopsy of tumor found during prior scan.

Follow up: biopsy results show nuero endocrine carcinoma of the thymus gland.

Next Stop: cardiologist.

Is it possible????  LOVE him!!

Follow up: schedule surgery to remove BOTH parathyroid and cancerous tumor.

Fast forward to today: the surgery is in two days and my husband is a nervous wreck!!