The World According to Lady Bren: Lady and The Brain ~ The Inbetween

Before I jump into this post I wanted to point out that The Brain was not experiencing any symptoms whatsoever from the Tumor. It was considered an incidental finding ~ incidental isn't that funny.
So what happens between a cancer diagnosis and treatment? Much more than you probably think

After the initial shock wears off and you begin to process everything, you realize there are many, many decisions that have to be made before Day 1 of treatment.

#1 Time Off

There aren't many people that have 8 weeks (320 hours) of paid leave available to them at a moment's notice. We were definitely one of those people especially since we've already used almost 80 hours this year already. What about FMLA (Family Medical Leave Act), was something many suggested. Yes that program guarantees you the needed time off for medical situations BUT it is UNPAID Leave. In addition to not receiving pay during that period if you are the subscriber of any benefit programs (like health insurance) they are repaid in full out of your first check once you've returned to work. Thankfully our medical team handled the necessary paperwork with no charge ~ yes there are some who charge you for filling out the mountains of paperwork required. Many employers offer leave donation programs; unfortunately while our employer does you can only receive leave if you have ZERO hours left on the books; something we didn't want to do, not knowing what the future would bring.

#2 Who Do You Tell

We have never been a family that posts their lives on Face Book or other social media. While this is obviously affecting all of our lives ultimately this is The Brain's story and he decided to keep it very quiet. There were those at his job who weren't aware of the situation until the week before he was set to start Treatment. One of our main goals in this time frame was to keep his (and our) stress to a minimum so that meant excluding many. It amazes me how people think they have the right to share information even when you have specifically asked them not to. This is not YOUR STORY~ you don't control the narrative. Do you know how freaky it is to receive a card from a stranger???? Let's face it you can basically find any one's address with minimal work on the Internet but to know a family member openly shared your address is something different. I had an argument with a cousin who said Auntie has a right to know. Really, a right? If they aren't an active part of our lives what is the right?

Lesson learned: No matter how hard you try there will always be Drama.
Deep Breath.

#3 Scheduling

This was strangely hard. I understood how hard it was to set a date as it confirms there is this cancer you have to fight and once you pick a date there's no going back; it's very scary. Is there ever a right time for this? You start thinking of everything? Nice weather to sit outside or maybe walk the beach. Are there holidays we can combine to shorten time off? This all sounds so ridiculous looking back but seriously all these different things were discussed. The Brain wanted to take a short breather and with the doctors' approval he decided on April 2 for his start day.

#4 Support

I cannot stress enough how important it is to reach out to those who have gone through this before and can help you navigate all that is ahead. Most hospitals and care centers have social workers and the like at hand for you. It is incredibly important for the caretakers to also create a support system. While all the attention, as it should be, is on supporting the patient, if their caretakers fall apart then how helpful can they be. There are many resources out there and in an upcoming post I'm going to share more on the incredible support The Brain Tumor Network has been for us

#5 The Mask& Radiation

"Radiation Therapy uses high-energy rays to treat cancer. It works by damaging the cancer cells and making it hard for them to reproduce. Your body then is naturally able to get rid of these damaged cancer cells. Radiation therapy also affects normal cells. However, your normal cells are able to repair themselves in a way that cancer cells cannot" from Memorial Sloan Kettering Cancer Center The ray is targeted so precisely to the tumor that even the slightest shift can be dangerous therefore the patient wears a mask that restricts movement. I'm not sure how anyone who suffers with claustrophobia could handle the making of the mask. I'll be honest I was quite intrigued by this process. They take a flat form that reminded me C3PO immerse it in warm water then stretch it over the patient and lock it onto the MRI table. It takes 15 minutes to cure. I was given permission to stay with The Brain and decided to entertain him. Now he can't move so I decide to play the only music on my phone, the soundtrack from Guardians of The Galaxy, and dance like a fool over his head and nearby making him laugh. I thought we were alone, key words in that sentence: I thought. Dr. Olson, the Radiation Oncologist and his assistant were on the other side of the one way glass the entire time. Oh Well this is us. The Brain did great and his mask was marked and ready for April 2.

Didn't he smile nice