Tuesday, December 6, 2016

Clinical Trial, progress report!

It appears to be doing something!!!

In the chronic illnesses world there are so many things that are not absolute.  The should'a, could'a, would'a language prevails!  I'm assuming this is connected to liability, or rather limiting their liability in case things take a turn for the worse.

At this time, the chemo in the trial appears to be doing something to Albert's cancer!!  YAY!!!

It's funny that no one wanted to use the words 'it's working' this visit.  Instead we kept hearing that it appears to be doing something.  Doesn't this infer that the meds are working since three months ago we were told that 'as long as it's working', he will stay on the meds and in the study? 

Specifically, the tumor they are targeting in the trial seems stable...it has NOT GROWN since the last scan three months ago!  Before this, it had shown growth at EVERY scan.

On the other hand, there are several new 'spots' on the scans that we are not gonna worry about until there is something to worry about!  They might be tumors, they might not be tumors.  Only time will tell, and we've got that right now!

AND Albert has been renewed for another three months in the trial!

So in our vague, vague, vague world...we have decided that something in EVERYTHING!!!

Monday, July 18, 2016

Great News!

(Pic: Team Speed Rollers, 2nd Place, Family4Life Fundraiser Tournament 2016)

Great News, Yay!

Albert gets to be in a clinical trial at MD Anderson!!

Yes, it's because they found more tumors, again.

Yes, it's because the existing ones are growing, still.

Yes, it's because there are more coming, soon.

BUT, the clinical trial is still exciting!!!  It is something that is available for a limited time and so it is great that he can get into the study NOW.  Also, if it doesn't work, he still has all the conventional chemo, radiation, and surgery options that he has today.

We are considering this a BONUS!!  and we'll take it!!


Read about the trial here!

Saturday, July 2, 2016

Gearing up for the next visit, reflecting on the last visit.

I have several unfinished posts that I have started and re-started.  All since the April visit to MD Anderson and each one telling just a little of the story.

As we prepare for another visit this month, I decided to compile all those thoughts and let you know why our days have been a little stressed lately.


Well, the visit came and went...and we are back to waiting.

First of all, Bert's appointments were scheduled for late afternoon, his last being at 7pm.  Since we were already there and coming from other testing, he went ahead and checked in at 6pm, an hour early.  He was finally called to the back to prep for the test at 10:30pm,  three and a half hours late!  At half past midnight, two hours later, we walked the 1/2 mile back to the car (the shuttle closes at 8PM), and all we could think about was FOOD!!!

These tests require him to fast several hours prior to the procedure, then when there is a delay, it becomes pretty difficult to not feel famished.  I feel like I can't eat either because just the smell of my food could be torture for him and all the other hungry patients also waiting for their tests.  This time, I cheated and told Albert that I was headed out to find a vending machine and grab a snack to make the wait.  I felt like a heel, but also felt so much better.  I came back and he was still waiting.

The crappiest part of this crazy schedule was that we didn't get to see our friend at all.  By the time we got to her house she was in bed, of course!  And she left for work before we even woke up the next day to dress and head out to the doctor visit.

The oncologist visit was reminiscent of early visits that are stressful and anxiety ridden.  At first we were very 'been here, done this' drinking our free coffee and waiting in the comfy waiting room with our electronics all plugged into the kiosks and feet propped on foot rests, covered in blankies, and then... the weirdness started.

The nurse called Albert back for vitals and to sit in the exam room.  She asked all the normal questions, went through the crazy checklist, updated all the medications list.  All seemed normal until the PA came in to do the regular bit, but instead said that the test results were not 'finalized' and we had a choice.  A, we could go on home and they would call us with the results, or B, we could wait until they were final and see the doctor.

Wait, what?

Ummm, didn't we just drive all the way over here?  Why would we want to talk to someone on the phone?  How is that even an option?  Why did the results have to be finalized?  Why didn't the doctor even want to see us?  WOW, everything came rushing back to us.  The cryptic, carefully scripted words.  The don't worry words coming out of their mouths, with the there's something to worry about looks on their faces.

Not to mention, that the results are NEVER finalized when we see the doctor at this point.  He ALWAYS says, the pathologist/radiologist hasn't finalized the report, but this is what I see...blah, blah, blah...if it's different, I will let you know....blah, blah, blah...and it's never different.

Again, what?

Somewhere out of the blue and through the shock, Becca spoke up.  (out of body experience here)  It wasn't me, because my mouth was still gaping open and my body had gone numb.  It wasn't Albert because his eyes were looking to me for answers, for acknowledgement, for anything.

I remember my out-of-body self telling the physician's assistant that we would most definitely wait.  We did not drive all this way and wait all this time so that we could hear bad news over the phone.  (Been there, done that too!)  We would be going down to the cafeteria, eating lunch, then heading back up to the waiting room.  There we would wait patiently until the results were 'finalized' and that we would be expecting to see the doctor.

Albert agreed!  It was a plan!  and right now, we needed a plan!

So that's what we did.  Had lunch in the big cafeteria.  AND that's when his endocrinologist spotted me, made eye contact acknowledgment and greeting, rushed over to our table and asked "AL" how he was doing.  He seemed very genuinely pleased to see us.  He started figuring in his head that it had been over six months since he last saw Albert and wanted to know how he was feeling.  He said that he was definitely looking great and wanted to get him on his schedule as soon as it was convenient for us!  He asked how surgery went and asked all about his recovery.

Make note that as this is happening in a VERY crowded cafeteria, so crowded in fact, that we are sharing a table with others because there are no open tables.  All the 'regular' people around us were looking at us like, "who are they?"  and all the 'employee' people around us were looking at us like, "who are they?".  It was very much like we were celebrities.  The doctor made a big deal and hugged us like we were friends...and asked us questions like he had Albert's chart written on the inside of his glasses.  His little medical student guy that was following him held their take-out boxes of food as the doctor just gabbed away with us.  It was pretty cool, actually.

As the doctor said his good-byes, we promised to call and get on his calendar, and they walked away...Albert looked at me and said..."he called me Al!"

So most of you know that Albert HATES the name Al...maybe hate is a strong word...nope, hate is not strong enough...he LOATHES the name Al!!

All I could think of is how many patients this doctor sees in a day, a week, a month or heck...the six months since we have seen him...heck yes, Albert, he can call you AL, he can most definitely call you Al!!!  How many doctors would even recognize a patient's face, much less know his name and full case history, by memory!!!  And remember, he saw me first.  I'm not even his patient!  He even asked how the kids were!  This doctor is incredible!!!

With our newfound celebrity status, we found a way to finish our lunch and cross through the crowded cafeteria of commoners to find the waiting room and resume our wait. (JK)

So back to reality, we waited a couple more hours.  this time, when Bert was called back, the doctor was ready to see him.  Results in hand.  Scans available to view on the computer, like normal.

The oncologist is a very genuine, sweet faced, serious man.  His look was more serious than normal.  He is always very straight forward and presents all options.  He is also always very optimistic.  (He's the guy that says Albert is going to live to be a very old man.)

So he started with, 'the news isn't good, but it isn't unexpected'.  And that was very true.

Ever since we found out that Albert has a reason all these tumors grow, we knew that this would be his future.  WHEN (not if) tumors present, we deal with them.  We scan them, measure them, observe them, then deal with them.  As they come, when they come.

We knew that the surgery he had in January was suspected to be 'residual' tumor from Walter White (December 2013 surgery).  The cardiothoracic surgeon said that they could be new tumors in the same area, or they could be what he called 'seeds' from where the first surgeon had to cut away vessels and tissues and organs to get the big tumor out. 

We knew that the radiation oncologist, 9 months ago, told us he was worried that there would be several more tumors appearing.

We knew that Albert's surgery follow-up revealed that he did not have 'clean margins'.

BUT STILL, you never want to hear that there is more cancer.  That there are more tumors.  Especially when it hasn't even been six months since the last surgery.

The oncologist said that there are essentially more tumors close to where the tumors were just removed.  In the same areas, still the same cancer.  More likely at this point, to be from all the points were Walter White was removed.

Our options: more surgery or more radiation.  (not more chemo right now because they are still localized, in one area)

His recommendation: WAIT.

URGHHHH!!!  always with the waiting!!!!   It's the most frustrating thing you can tell anyone..."let's watch and wait".  "wait for results".  "wait for growth".  "wait for change".   "wait, wait, wait, wait"!!!!!

And so we have been waiting since April.  We are not sure what we are waiting for.   But we are waiting just the same.

Meanwhile, we live everyday.
Pain tells us he is still with us.
Exhaustion tells us he is still fighting.
His smile tells us he is still hopeful.
Waiting tells us we still have time.


Thursday, June 16, 2016

Nerves are frazzled, Fear is here!

I realized that I haven't updated you in a while and the short story is, Albert needs more treatment for more cancer.  In July we will find out all the particulars, like what treatment, when it starts and how long it lasts, how much the tumors have grown,,,and on, and on.

The truth is, not talking about it has simply been easier for coping.

Most people don't think of their morbidity on a daily basis, it's usually when someone very near to them dies.  Very recently, we have had several deaths in our close family circle and it makes us feel like death is constantly staring us in the face.  It makes us wonder if Albert is next and we wonder how much time he has left.  It's scary.  And it's tiring to constantly stare back at death and keep shouting: "GO AWAY!"

We have both started back to counseling to help us cope with the anger, anxiety, and despair.  

It helps. And sometimes it doesn't help.

Crying helps too.  Being with friends helps.  Leaning on each other helps.  Hoping for good outcomes helps.  Keeping active helps.  And sometimes, even those things don't help.

What doesn't help?  Telling us that all we have to do is pray and it will all go away.  No, that doesn't help!

Prayers for strength and endurance are much more helpful.  And sometimes they are not.

Coping with chronic conditions brings a plethora of emotions, almost like the Texas weather.  They say if you wait 5 minutes it'll change.  The same goes for our feelings and emotions.  Hope and desperation are constant companions.

When you see us, we are probably smiling.  Mostly, we feel like smiling, occasionally, we are hiding behind a smile, waiting for the smile to melt the feelings underneath.  It's never a fake smile.  We don't believe in those.  We want to live each day to the fullest and never give up on US.  And so we smile.  

Smiling helps.


Sunday, April 3, 2016

It's been a while!

Just checking in since it has been a while since I posted.

Albert returned to work a few weeks back and went full force.  I suggested he start gradual, half-days or work from home some days...but nope!  He opted to work about 60 hours his first week back!

Then, that Saturday morning, I expected that he would sleep in.  I managed to keep the four dogs and three cats quiet while I started on some quiet housework AND who pops in the kitchen looking for coffee, dressed head-to-toe in yardwork clothing??  Yes, Albert himself was up early and wanting to work even harder!

I asked him if he was sure that he wasn't too tired to work outside since he had had such a long first week, he replied that yardwork was his "reward" for all his hard work at the office!!!


After a full day in the yard, he said he felt great!  This man just keeps on amazing me!!

The scars are pretty much all healed up, he's ready to show them off this summer in his swim trunks.

The only residual pain he has is the area where his diaphragm had to be reconstructed.  It's not quite tender to the touch, but it screams at him when he bends to tie his shoes or pick something up off the floor.  BUT his breathing has improved.

He has another follow-up coming soon.  They will look at all the existing tumors to check to see if anything decided to start growing larger, look for any new tumors, and check to make sure his hormone levels don't show any signs of MEN-1 activity.

So for now, all is well in our little world!  

Thanks for reading, caring, believing,

Friday, January 15, 2016

Finally made it home!

Finally made it home AND took a couple of days to rest and get settled again.

We welcome visitors, food, and  healing thoughts!!


Sunday, January 10, 2016

The Great Escape!

OK, so it wasn't exactly an escape, but Albert was released Saturday afternoon, smack dab in the middle of the Texans game.  Yes, the one where they lost their marbles and forgot how to play football when they got to the playoffs.  We did get to watch the end of the game from a comfy bed at our friend's place.

So for the next few days, before we head home, we will take it easy, work on pain management, walking, breathing and arm excercises...and doing our best to avoid pneumonia. Pneumonia is the team's biggest concern.  So  these breathing exercises and walks will help clear the lungs and get out all the gunk that could cause them to collapse AND then keep them clear.

Lucky for us, we stay with the sweetest, kindest lady that treats us like her children, cares about us, loves us, and makes sure we have everything we need.  

We should be headed home early next week provided everything is still going so very well.

Thanks for reading,