Thursday, March 27, 2014

Chemo: Round 1...Done!!


Yay!  Round one of chemo is over!!  

Tuesday Albert couldn't tell if it was the chemo that was making him feel tired, or the fact that Monday was such an exhausting day.   But by yesterday, he knew it was the chemo.  Through today his fatigue is only increasing.  It's all we can do to keep appointments right now, and in between, make sure we are resting.

He's back on a night medicine to help him not only sleep, but stay asleep...big improvement!!

Those first three days of chemo are supposedly the hardest.  At least that's what the nurses keep saying!  It was nice that they kept the IV inserted for the three days, I'm not sure he could have handled that tube going into his vein three days in a row!  

I told him to be thankful that he didn't have to be the one to have babies, 'cause I didn't think he could've taken the pain.  For some reason, he didn't find me humorous, only more annoying.

So today and tomorrow are much more relaxed.  An oncology visit and radiation today, radiation only tomorrow.  We plan to head home tomorrow evening.  Then next week's appointment isn't until the evening, so Jake and Albert will leave later on Monday morning than we had to this week.

Next week is proton therapy (radiation) only, daily, so it should be a little less stressful than this week.  Bert already checked out the bowling alley in preperation for his and Jake's free time next week.  He is optimistic, fo sho!

Our plans are pretty much to stay home this Saturday and Sunday, so feel free to stop by.  Especially if you are bringing food to share with us!!  LOL  

So we are reactivating the care calendar to help us with meals on the weekends.  If you do sign up, we would love for you to eat with us if possible!!  We love the company!

Thanks so much for following along in our journey!

Keep the prayers going and make sure you subscribe to the blog so you get the latest updates.

-Becca 


WE TRULY APPRECIATE YOU!

The site is at www.carecalendar.org.

Albert's calendar is 167807
The password is: thanks




Tuesday, March 25, 2014

H A I R !!

For some reason hair has been a big deal around here lately.

It seems like everytime I turn around, someone is chopping their hair off!!

It all started when Jake walked out of the bathroom one morning with a complete buzzcut!  Self- inflicted, but a darn good job anyway!

BEFORE

AFTER (in the blue shirt)

Next!  A few days later, I get a group text from Kasey.  She had sent her dad and me a picture of a very unexpected haircutt!  A friend of hers from school did a great job!
While I did love her longer hair, I think her short hair makes her look more like her mama, which I LOVE!!  (I think I had the exact same hair cut right before I was pregnant with her in 1991!)

What do you think?


Then I found out that my sister, the long-curly-haired beauty, tells me she's gonna get a new do!  She was ready for a change.  The last time she went this short, I think she was in middle school!!!

She looks incredible!!  I've always admired her self confidence and courage!  I can't say enough HOW MUCH I LOVE HER HAIR!!!

Lastly,  my Sweetheart has been getting advice over the past month in reference to his upcoming treatments.  One of the tell-tale signs of chemo and sometimes radiation is temporary hair loss.  A way to help minimize the shock is to cut it short.  Otherwise, you tend to clog the shower drain with nasty hair balls or WORSE, you begin to look like you're sporting a bad comb-over!!!   (Homer Simpson)

If you know Bert at all, you know that he has the most gorgeous hair ever!  While I was in Alpine, he decided to take the plunge and have his hair dresser chop it off.  Needless to say, she was shocked!!
Whoop! Whoop!!  

Can you say, high school hair cut???  It is very 1986!!! Well, except for the gray hair!!

Albert!  You can pull off any decade!

So, i guess it's my turn, right?  I need to come up with something dramatic!

-TTFN





WOW!!! What a day!!!!

Treatment || Day One:
March 24, 2014

The day started before the crack of dawn, 4am wheels rolling!  We decided to spend one more night at home, in our bed, with our babies!  Hence, the ├╝bber early departure.  

But it was worth it!
Bye,Bye babies, we will miss you!!

The ride in was uneventful, which is the best case scenario on a road trip.

Houston morning traffic was, to put it mildly, Houston morning traffic.

We arrived well ahead of schedule and had time to stop at our new favorite breakfast spot, Dunkin' Donuts!!!

We got through a full schedule of doctor visits, labs, genetics counseling, and by the end of the day, were ready to start treatments.

The chemo was first at 4pm.  When we checked in at 3:30, we were told they were running an hour and a half to two hours behind.  GREAT!  We only had a 5 hour window until radiation at 9.  The treatment was anticipated to take 4.5 hours.

Sooooooo, we told the chemo people that we had another appointment and we told the radiation people about the late schedule.

Since the chemo place is open until 3am and the radiation place is open until 10pm, we took our restaruant-style pager with us to the radiation center because they said they could see us before the chemo pager went off.  The race was on!  You know we both love a challenge.

So wouldn't you know it, the pager started buzzing, lighting up, and beeping about 20 minutes after Bert went into the radiation machine (about 6:30).  The first visit unfortumately is the longest, about an hour-and-a-half.

Radiation treatment #1 was a success.  Albert said he didn't feel a thing.  It was cool seeing the gi-normous equipment.  The techs and nurses were super great!  And he had the energy to drive back to the main building and see about getting back in line at chemo.

It must have been around 7:30pm when he finally got all hooked up to the chemo machine.  That's when the nurse said that there were some pre-meds that would take 30 minutes before the 1st chemo drug started, then 4.5 hours later the 2nd chemo drug would start, and take about another 30 minutes.  All in all, we should be out by 1am.
We settled in, ate supper, watched movies, played on our electronic devices, and attempted to nap...rather unsuccessfully.

The meal is included in the treatment if you are there during a meal time.  VERY nice surprise.  Except we were too late for supper.  No problem, the 24/7 cafe has sandwiches, smoothies, baked goods, etc. and it hit the spot!  Those growling stomach muscles shut right up!!
We enjoyed our time, decided early on to just go-with-the-flow, and spend all our energy in the here and now.  To heck with schedules and regular sleep/eating patterns, we would rest/eat whenever there was time and concentrate on keeping smiles on our faces! (New parents can relate.)

We finally finished at about 1:30 am.  

Chemo treatment #1, also a success!  [B-O-O-M!! Confetti!!!]

Next, we tried to find a 24 hour grocery store so that we wouldn't have to wake in search of food.  Silly us, thinking we could find an all night store!  Pshahhhh!  as if!!  

An hour later, we were praising the very thoughtful Kroger people for keeping their store open for the crazies like us.  Small inconvenience that we had to do a self-checkout.  Maybe we would have gotten less if we knew that ahead of time!  

So 24 hours after we got up Monday morning, we were finally settling in for the night!  We couldn't decide if we were even sleepy, since we both felt too wired to sleep, despite our exhaustion.

I'm not sure I even made it a full minute later, but the next thing I knew, it was morning and Albert had already made us coffee.  I guess he crashed immediately as well.

Wow!  What a day!


Monday, March 24, 2014

let's catch up!

It has been a month since the last time I was at MD Anderson, and a lot has been happening!


Let's see where we left off...

February 24th and 25th were filled with tests, scans, labs, and a completely overwhelming 3 hour scan to create a phenomenal 3D image of his heart and the tumor.  They wanted to see if Bert was a candidate for another surgery. The surgeon met with more surgeons, who met with the first surgeon...and the decision was that Albert would not get another surgery.

Apparently the tumor has invaded too much of his heart and is putting too much pressure on the major components of his heart.  Specifically, the vena cava, the aorta, the right ventricle, the right atrium, the pericardium and the something-cardium that is the next layer in.

It's one of those bittersweet moments where on one hand we were excited by the prospect that they could possibly remove all of the tumor and have a better prognosis.  But the other hand brought fear.  We were scared senseless about the idea of re-opening his chest and going through surgery and the long healing process all over again.

Their worry now is that a heart attack could be more imminent danger than the cancer.  

Next we met with the radiation oncologist who provided us the first negative experience we have had in the whole process.  Mostly,  I felt we weren't being given realistic expectations.  His recommendations were pie-in-the-sky, Pollyanna-ish.  We had the most questions for him, but got the least answers.  It was disappointing to say the least.  

Since radiation is Albert's best/only real chance, we felt we needed more answers.  

Why was the radiation oncologist so confident this would work, when all the research and other doctors have re-iterated the fact that we don't know how/if Bert's tumor would respond to radiation?  What was the basis he was using for his recommendations?  What were the real odds that this would work?  Instead of being given the closest approximation possible, we were expected to drink the kool-aid and just do as we were told.

We scheduled a follow-up with the same doctor and this time got lots of answers, studies that he was basing his hypothesis on, and a much more real encounter with the entire team. Additionally, our primary onologist in charge of Albert's case managment truly gave us peace of mind when he explained the team's protocol for addressing very rare cancers.  

Sometimes, yes, there are cancers that are so rare that no one in the hospital has even seen this cancer first hand.  Such is the case for Albert. But, it doesn't mean that there is nothing they can do for us.  This is when their experience, expertise, and knowledge comes most into play.  Because they understand the logistics of how cancer behaves once it is active, they can use these basic principles to make assumptions.  Additionally, cancers in similar regions of the body tend to react to treatments in similar ways.  Also based on the type of cancer he has, they pretty much know what doesn't work.  They take what they know and develop a hypothesis for what is most likely to work.

The primary oncologist also recommended chemo to help make the radiation more effective.

In the end, we did choose to go with the combined radiation and chemo therapies. The radiation is a specific type of treatment called Proton Therapy.  The chemo drugs are a type of hormone therapy that will hopefully inhibit the growth of the cancer as much as possible, basically cutting off it's food supply and starving it to death.

Proton therapy: 35 treatments, 5 per week for 7 weeks.
Hormone therapy: 9 treatments, 3 per week on weeks 1, 4, and 7.

Fast forward to March 13th!

Jake drove his dad to Houston to get fitted for the radiation machine and his body marked to get precision laser beams to the exact spot.

Last week I took a mini vacay with my sister to go see my baby girl in Alpine.
We had a great time and I was able to recharge my battery to get me ready for the next 7 weeks.

Yesterday was day one for us.

I think that catches us all up for now!!  

I'll be posting updates here while we are in Houston for the next two months!

-Becca