31st Post. Measuring Kindness.

The first day of radiation I went with my husband Will.  I knew it would be difficult for him for obvious reasons…and I wanted him to be cared for while I was in the room when he was asked to leave before they began the x-rays and then radiation.

We walked into the SCCA Proton Center when Sam and Sylvia Ketcham appeared in the waiting room.  Will was so surprised and emotional.  He just looked at me.  I said “well you can’t sit here alone crying while I am back there…I won’t be able to handle that, so I called your brother”.

I wasn’t sure how Will would react, but it was all positive.  I know he was so relieved to have them there, to bare witness to not just what I was about to do, but what he was dealing with.  Being the spouse is not easy.  I think it is more scary for Will than it is for me.

I am not claustrophic.  Thank goodness.  Between MRI’s every three months, and the mask for Proton radiation you have to be clipped into, it could be a game changer, not for the better, if you were claustrophic.

My green mask was my guardian.  Each day you line yourself up on a robotic arm.  You have a neck rest that has been custom-made to hold your head in the right position.  Then a bright green sheet of hard plastic is put in a hot bath to make it malleable.  They place the very warm hot plastic sheet on your face and start pressing down everywhere -to get a mold of your face…skin tight.  They give a little pinch to the nose so breathing is easier.  The mask takes at least one week to set and harden.

Once the mask is placed on your head they snap in the locks on the mask to the board you are lying on.  I think there are five of them.

However before you even get on the robotic arm, you have to get so many things scanned, for security, to ensure you are the intended patient – getting the right proton radiation therapy.  The dosemetrists calculate the amount, the exact place etc…for the radiation to hit your brain.  They line you up and have little circles and x’s on the mask.  The person must be within 1 mm of the line in order for the Proton machine to release the radiation.  It is that precise.  But that is precisely the point of Proton radiation.  It is targeted.  It is not Photon radiation which radiates the whole brain, scanning it entirely.  It creates collateral damage or risks that are not necessary.  Proton is targeted…it hits where the tumor was and a pretty good radius around it.  Radiation is the ground troops – going after specific targets….Chemo is the air raid, which certainly kills the bad guys, but also has a lot of innocent bystanders.

So we all walk in not knowing exactly what we were to expect.  I wasn’t emotional and I wasn’t scared.  I was very, very self-conscious.  I felt like all the staff were looking at me and I was exposed.  I have never felt this sensation before.

As the four of us were escorted into the room, we all just sort of looked around to take in what lay ahead.  My proton technician Clif, is the most wonderful, kind, amazing man.  He is an angel on earth.  More about him later.

Cliff kept the mood light, but not silly.  That would be inappropriate and just, well, wrong.  It was very almost sacred, what goes on in this room.  It is all white, they make it as calm an environment as one can, and it is oddly intimate.  People help you on the table, you get adjusted, they put the mask on, then they snap you onto the table – as in you can not get off the table because your head is literally now attached like a vice, to the robotic arm (aka table).  Then your guests have to leave.  Then one by one, the technicians leave.  As each leaves you hear a bell go off.  “Beth, when you hear the second bell you know we have both left the room and are behind the glass and ready to start the proton beam”.  Ding….Ding.

Now you are alone.  And the mask is so tight against your skin it makes it impossible to speak and it forces your eyes shut.  You get to pick the music you want…or let them play DJ…I almost always let them select the music…they must have a playlist called “super upbeat, no sad lyric music”.  It was always a comfort.

Before they leave they place one or two warm blankets on you to be comfortable.  They hand you a squeezable ring about the size of both hands together that you can hold and or squeeze to help you stay still and relax.  I decided day one to slip it through my right hand like a bracelet, fold my hands together interlocking my fingers…and started to talk to my dad. I have to say I did cry.  My eyes well with tears as I write this.  This first round of radiation did not hurt, but it was so unexplored, so unfamiliar, and was such a powerful scary thing to have to surrender to.  I can not explain it.  Words elude me from being able to explain the feeling.  It felt other-worldly.  How the hell did I end up here?

I listened to hear the machine…but it was silent…just a very very slight hum.  After the first round on the left side of my head Clif and his fellow technician came back in and the robotic arm lifts you and moves you around so now it is the right side of your head up against the proton machine.  Again an x-ray to make sure you are within 1mm, and then the two bells.  Second round.

As soon as it is over they excitedly walk in the room and exclaim “Great job!  You are done!!!  29 to go!  You are doing awesome!  Hope you are okay!  That was amazing!”.  What is amazing, are the employees of the Proton Center.  Absolutely remarkable.  Kindness and sincerity pour from every part of their beings.  I would love to be a fly on the wall as they interview technicians, nurses, scientists.  Kindness has to be measurable somehow…because after six weeks going five days a week, it was the common denominations of each employee I interfaced with at the Center.