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.


1 comment:

  1. Love you guys is what comes to mind 1st!! Reading this is hard for me as I fight the fight as well but at the same time I have to read because I want to know what is going on with Bert as much as possible! I hate the waiting game!! I am doing the same as of now! Several nodules popped up again & this dumb foot not healing because of chemo complicates things! So they have me on immunotherapy as of now, to try to do something rather than nothing! I'm trying to be hopeful with it but at same time my body lets me know when changes are there! Actually Bert inspires me as he has been fighting a lot longer than me & has been thru a lot more surgeries this far & you inspire me as well Becca! I appreciate you writing & keeping everyone posted! I am not always up on it as I should be or my fam... It's so easy to get side tracked & just plain not feel like it!! I find myself wishing we could all visit & talk & share!
    Just want you both to know your on my mind often & I keep Wade up to date as well!
    Sending love & hugs your way!


We love reading your comments!