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The Walk, the Shock, and radiation

May 9, 2016

THE WALK

Sunday the first of May was the 2016 Seattle Brain Cancer Walk.  Once again I was overwhelmed with the amazing support and turnout for Team Defeat Goliath.  This was our 5th walk and out of the 5 years, Defeat Goliath as been recognized for being in the top three of largest teams or top three for most funds raised 4 times! 4 times!  That is awesome.  This year we had the second largest team!    The walk has always been both an amazing and challenging day for me.  It’s a chance for me to reconnect to other brain cancer warriors, get updates on how they are doing and get information about treatments and options.  However it also is a big reminder of why I am there – Goliath.

A huge thanks to everyone who has joined us, donated to the cause and supported the team over the past five years.  This year was especially important for me as I am back on treatment again.  Proton radiation to be exact.  Although I am being treated at UW and through the Seattle Cancer Care Alliance ( Which is made up of UW, Fred Hutch and Children’s Hospital), all of the funds from the walk go to the Ivy Center, which is at Swedish Hospital.  The Ivy Center is a wonderful place that is working hard to save lives and does have some of it’s own clinical trials.  The person who heads it up, Dr. Charles Cobbs, is the person who has been providing me with a second opinion with my care and treatment options.  I have also been working, in a small capacity, with him on a non-profit project he has been trying to get going.  I can say for a fact that all of the funds raised are going to a great cause.

Team DG

Funding, research and knowledge are critical at the moment in the brain cancer world as cutting edge treatment is being altered by which types of treatment insurance companies will and won’t approve.  I was not approved by my insurance carrier to receive proton radiation, my insurance company, Premera, claims that this type of treatment is experimental and thus is not approved for low grade tumors like mine.  However they will approve photon radiation, which, based upon my research will most likely leave me with some type of cognitive issues or a different type of cancer in the future.  It doesn’t make much sense to me.  But if I was a child I would be approved.  But since I am not, Premera would rather take my career away and prevent me from being a productive person in the economy, by destroying my brain just to save a buck.  However I think, by being so difficult, they are really just pushing out the expensive healthcare costs down the road to the future.   Why not use the least harmful methods now?  It really doesn’t make much sense.  Here is a link to a Get Jesse Story from KIRO News  7 about this very issue.  I meet Ronnie just after he was diagnosed and we served on a focus group together.  He is awesome for taking on the insurance companies for all brain cancer warriors and is a huge hero!

Ronnie Castro Story

I do have some help in paying for my treatment, the SCCA has agreed to cover the costs of my treatment up to my normal out of pocket amounts. Then they will take on Premera to get them to pay.  I have already signed the paperwork to one guarantee payment and two give them the authority to fight on my behalf.  They are basically covering what my insurance will not.  However it still really sucks and is infuriating. It is because of people like Ronnie that SCCA has stepped up to make sure that people get the treatment they need, in spite of the negligence of the insurance companies.   That is something that is not forgotten by me. Something that I am going to see what impact I can have in challenging the insurance company decision makers.

THE SHOCK

This past week has been a challenging one.  A friend and co-worker of mine passed away last week.  I first met Stan Rossi back in January of 2010.  My firm hired him as a staff accountant.  Like me, Stan was an early morning riser and we quickly found the we would be the first people in the office cranking away during tax season.  I quickly learned that he, like me, lived in Snoqualmie Ridge.  He had an interesting career path, from having a medical practice as a podiatrist, to giving it a go in acting in Hollywood.  After selling his practice, Stan had some down time and decided to start a second career as a CPA.  Stan was always a super hard worker, who was extremely dependable.  He was also a very caring person, on the weekends during tax season once he was done, he would go visit his mom (she is currently 99) and would take her to dinner.  They way he spoke about that time, it always seemed to be a very special time for him.  We would have some fun debates about how to apply the tax code to various client issues.  We had a particular testy debate about Savers (Value Village).  Savers the parent company is actually a for profit company.  Thus Stan was adamant that you can’t deduct a donation to a for-profit company on a personal tax return.  I ended up doing research about the company and how it does qualify for people to make tax-deductible donations to.  He finally gave in to my research memo.   We soon both discovered that we both were runners and that instantly became a bonding factor between us. We would have long talks about our approaches to running and how they differed.  Stan was more into getting fast times and I was more into running trails and running for fun. Stan would list races that he ran and the times he got. It was impressive.  I would tell Stan about my running plans for the week (during tax season, I run Snoqualmie Ridge in the dark via head lamp) That started the daily game, Stan would look for a runner with a headlamp on the days I ran and would always be trying to find me.  He would see a runner with a headlamp and would ask me where I ran that morning.  When he would see me, he would light up with pride for seeing me.   After tax season in 2010, my company and Stan came to a mutual agreement that a full-time role was not going to work out and thus Stan was laid off…

Stan and I still kept in touch after that and a few years later, we were in the market for some tax help during our busy season.  Stan was the first person we contacted and in 2013, he was back!  Stan was not a person to tread lightly nor mince his words. I will never forget the first time I saw Stan when he came back in 2013.  He looked at me and said ” David what happened?  You do not look like the same fit person I remember.”  I told him that he was correct and yes things had changed.  I explained to him that I was diagnosed with brain cancer, had surgery in 2011 and did a year of chemo in 2012.  I told him that indeed, it had taken a toll on me and that I was not as fit as I used to be.  Stan worked for us in 2013, then 2015 and again this past year in 2016.  He was a marvelous tax season wonder and helped us out greatly.  Stan would come in on his own time to attend meetings and would come in to do some training on his own time. That is very hard to come by.  That is integrity and dedication.  We finished tax season this year on April 18th.  We had many a long conversation about the increase in property taxes in Snoqualmie (I would conclude by saying thanks for helping to fund my kid’s futures schools) as well as talk about the NFL draft.  Which was sort of like second Christmas for Stan.  After tax season ended on April 18th,  our office was closed on the following Friday.  The next Monday, I got a call from Stan in the morning, he told me that he was not going to make it in as he was in the hospital in the ICU and wasn’t feeling good.  However that was supposed to be his last day.  Typical Stan, he wanted to make sure that everything was in place for his last day, that his hours would be properly recorded.  I told him that I would make sure that everything would be handled and that he just needed to worry about himself and getting healthy.  Later on Monday he called me back.  I asked about how he was doing and he said that “things are worse than he thought.”  That was scary to hear. That would prove to be our last conversation.  I went to the hospital on Tuesday, only to find out, that due to hospital rules, nobody could talk to me about his condition.  Stan was in the ICU when I saw him, he was asleep and snoring.  I left a card that was signed by the  whole office.   The lack of knowledge was frustrating for me to deal with for me.  The next day, we were able to get in touch with his neighbor, who was the medical power of attorney.  He gave us the basics on Stan.  That was helpful.  Based upon the initial diagnosis, it seemed that he would be soon on the road to recovery.  The next time I saw Stan was Friday of that week, when I came back to the hospital this time, I discovered that Stan was now on a ventilator. The card I left, sat in the same place, unopened and untouched.  Meaning he never regained full consciousness that whole week.  My experience says that once someone goes on a ventilator, they don’t ever get off…

Stan died that following Monday.  I was in shock, granted he was 69, but he was fit, sharp and healthy.  To see the rapid decline over that week was, and still is hard to believe. To see him on the ventilator was simply heart breaking.  Stan was a great man and someone that I will certainly miss.  We still have an after tax season beer waiting to be had…  I salute Stan Rossi a, great man and friend.

RADIATION 

One question that people have is how is radiation?  The truth is so far so good.  I am 3 weeks into a 6 week cycle.  My hair has just started to fall out. So  far it’s just been around where the radiation is entering my head. Outside of that I feel pretty good, although I think my energy levels have decreased a little since the start of treatment. The facility and the people have been wonderful. Each session has been on time, and I am in and out.   From what I am told, the side effects should continue to build, but I am hoping to be able to push through. So far so good, but I am not out of the woods yet…

DEH

DG

 

2 Comments leave one →
  1. abarrabarr permalink
    May 10, 2016 3:25 pm

    David, it was so great to see you at the Walk. Maybe it’s the radiation — in some sort of superhero kind of way – but you looked taller than I remember. HA! Good luck on the last three treatments.

  2. May 10, 2016 3:26 pm

    Ugh! Abarrabarr is actually me, Anner. I was just logged in on Hub’s account. Don’t worry, no weird stranger is keeping tabs on your height.

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