Fighting the Dragon...from the other side.

A guest post from my daughter Heather to share her time and experience. I hope it is helpful, I hope it is educational, mostly I hope you understand we are not alone. We are all struggling with this baffling, crazy disease. Thank you Sis, for your Love and knowledge and strength! You Da Best!! 

“But if you can feel the sun
If you can feel the rain
Life can't be bad
If you've got food to eat
And all your dreams to dream
Life can't be bad
If you can walk away
And fight another day
Life can't be that bad” - Joan Armatrading

BC… and life AC…

Have you ever met someone who has lived a very blessed life? Well, let me introduce myself… I am Heather, daughter to Skip and Mary; wife to the most loving and supportive husband Keegan; and more than blessed mother to my sweetest little men, Brogan and Kesten. I am blessed with a warm home, a wonderful job as an Innovation business consultant in Healthcare (with a childish hope to make patients’ lives a lot better), healthy babies, and the closest family, including my in-laws (of which that title does not do justice, they are as close to me as my own blood). I am Heather, and I am just blessed.

A little about life BC (Before Cancer)… Three days before the Seahawks won the Super Bowl last year, I gave birth to my littlest guy Kesten. My Dad, known to my kiddos as Poppa flew off to New York with his best friend Craig and life was just good! The day before we were discharged from the hospital, Poppa “met” Kesten through one of technologies modern miracles Face time. It is a memory that I hold close to my heart, dialing up Poppa at 3:00 in the morning and introducing him to his newest grandson. It was amazing, warming and just lovely.

Fast forward to March and Poppa’s newest little grandson, my sweet nephew, baby Nolan Long entered into the world. (Apparently, we are building a football team) An amazing experience for all, and again our lives were just good! April came, and I turned 30 surrounded by loving family and friends, again life was just good!

On May 19^th, I got a call from Mom saying something had happened to Poppa and they were at the ER in Providence. Keegan picked me up from work and away we went. I was sure that Poppa had a stroke and I vowed on the way there that eating habits were changing on Sunday dinners and exercise was in our future! I was putting my foot down! Then, surprise… surprise… I was very wrong (you learn to admit these things easily after becoming a mom!). Turns out Dad has a hitchhiking friend taking a ride in his left temporal lobe, known as glioblastoma. I use the term “friend” loosely and really mean a hitchhiking bastard, but will try to refer to it as a friend in effort to remain optimistic.

Life AC (After Cancer)… Such a blur… That first week was filled with milestones. Get Dad out of hospital – Check… Get Dad booked at SCCA – Check…  Marathon visits at SCCA and UWMC – Check… Meet Rock stars (Dad’s neuro-oncologist team), get plan – Check, Check…

Now let me tell you one thing, these milestones were only met because we had each other. We are blessed to have Jenae, an uber smart nurse in our family, who convinced us to get Dad under the care of said Rock stars. These Rock stars removed that little hitchhiking friend and returned to us my Dad, pretty much whole (minus the tumor, thankfully).

Now, if you know anyone who has undergone brain surgery, it’s a pretty big deal, and pretty scary. The unknown of how they will wake up can be unnerving, to say the least. But 2 days later (Crazy, they let you go home 2 days after cutting open your brain!), we were home with Dad. He was pretty much the same, with the exception of a new found sweet tooth thanks to the steroids (he ate more cookies those first weeks home then I have ever seen!) and a serious craving for “Grilled Cheese Frenchies” (Google it… but don’t make them, we know from experience, they are less than tasty…).

So, we had our plan. A little break to let the scar heal, then 6 weeks of radiation and 8 months of chemo. Good. Mostly what I remember those first few weeks AC is that we had family (friends are literally family too, and should be included in this sense of the word). Strong loving support to pick us back up when we fell down, family to laugh with when all you can do is make a joke, because it is all too real and scary and sad. So, Dad, and “The Girls” (as said Rock stars refer to Jenae, Mom and myself) had a plan, and love, laughter, and support.

Life AC… crazy, scary, real and still good…

Now, I will be the first to admit, I am not nearly as eloquent as my Dad when it comes to writing, so bear with me. And I firmly believe that this is his journey, so I won’t go in to details about what we/he has experienced the past 9 months, but instead encourage you to read his older posts from the beginning. I think you will find them honest, and entertaining at the same time. When I first started thinking about guest blogging on his blog, my intentions were to share some of what I have experienced fighting the hitchhiking little bastard, I mean friend, (I am human, I slip from time to time…) in effort to shed some light into what this journey has been so that others experiencing the same fight may find comfort. And to be honest, I am hoping to find some comfort myself.

So, the last 9 months have been crazy, but Dad is a fighter. He went through radiation like a champ, and honestly, I think he used it as a new excuse to take an extra nap each day (it’s our secret Dad ;)). We had a few bumps in the road thanks to clinical trials, but overall the summer flew by and Dad was so strong. Not to say there weren’t hard days for all of us. This shit is real and real scary some days, period. We had each other and focused on our love, helping each other and supporting Dad however we could.

So, to share a couple of things I have learned for anyone who is going through this or a similar experience.

First, healthcare and insurance is seriously messed up here, just prepare yourself! I work in healthcare, and even I was surprised by the amount of red tape, bills, explanations of benefits and everything else that is just so bureaucratic and confusing about healthcare.  (this is just one of the things I hope to change during my career)

All that said, one of the first things we did (thanks to Jenae’s suggestion, she knows lots of good things) was to get an accordion folder for all the paperwork that was given to us in the beginning. We took this and a notebook to every appointment. If you have joined this bandwagon called Glioblastoma, get a notebook and a folder, just do this. The next thing I did was get a binder for all the bills and explanation of benefits that would be coming in the future. Do this, and organize bills and EOB’s by date. Then when you go to compare them, it won’t be quite as overwhelming. Read your insurance plan, and call customer service if you have a question. Understand the deductible and know what your out of pocket maximum will be.

Doing these things will give you knowledge, and knowledge is power (in my humble opinion).

But sometimes, especially when you obsessively Google GBM, knowledge is not power (turns out knowledge is fickle!) So Google GBM, and the statistics, and the support groups. But DO NOT, I repeat DO NOT, spend hours Googling. This does no one any good. But it is good to know what this disease does, how it progresses, how others are surviving, and ultimately to know what you are up against. And to find courage to fight this beast.

Then shut down your computer… and tell your dad or loved one how much they mean to you. Hug them, love them, then create and share memories.

The new normal… scanxiety and other things.

Another thing I have learned is that scanxiety is real for everyone involved. After radiation therapy, we all adjusted to the new normal, as much as we could. Dad on temodar for a week each month and scans every two months. The first scan post treatment was intense to say the least. I think we all felt it. The scanxiety creeps up slowly in the weeks leading up to and flies full force ahead as the scan date approaches.

It’s always a little funny to me, thinking about the whole group of us trudging through the hospital for scans and appointments, just Dad and his girls! The MA always has to find an extra chair during Dad’s appointments, but we girls wouldn’t have it any other way. The Rock star always begins with “and How are the girls today?” then proceeds to tell us about his latest vacation. (I think Rock star forgets all we really care about is the dang picture of Dad’s brain!) We listen and chat politely, and then finally get to look at the scan!

So the first scan came and went, clean, no progression! Great! Relief does not nearly describe the feeling after the first visit. Second scan, clean, no progression! Must be the Billy Joel Dad listens to during his MRI…(growing up as a baseball family, we know superstition is totally legit, and we have our rally caps on). Keep up the Billy Joel, Dad…

Football season is on a roll, and the Seahawks are winning. Our next scan is a few days before Christmas, and the best present yet, our little hitchhiking friend is shrinking. Awesome scan! Go, Dad, go! So we entered the New Year with new hope and new courage.

Now… here is the ugly truth about this dragon... You learn to beat him, we fight with the chemo and the radiation, but this dragon is smart. He learns too, he builds a defense and… he breathes fire once again.

(Billy Joel, you have failed us… Joan Armatrading, you are up to bat!)

Dad’s last scan in February shows some small progression (which is bad, but good because small is better than big… life AC is ironic this way). And so the battle begins again. New chemo drug Lomustine (Bonus, Dad only has to take this once every 6 weeks) and Avastin infusions every 2 weeks.

And, you expect the recurrence, (thanks to earlier mentioned obsessive Googling) but the range of emotions you experience don’t change, and still feel unexpected. In the last week I have been more mad than sad, then accepting, then mad and sad all over again. These emotions are real, brutal and beautiful. Hard, but beautiful because I can still talk to my Dad, text him song lyrics and silly pictures of my kids, watch him cook with Brogan during our Sunday dinners and see him smile when Kesten says “Poppa”. 

Beautiful… and it is for these things we begin to fight again. As Dad would say, Fire Up Big Team!