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!


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