After I was first diagnosed with brain cancer, I felt like there had to be a reason why me. I wrote a post about why bad things happen to good people and really tried to get some meaning of this. Granted the answer may just be that this is “karma” coming back at me. However I tend to think this is not the case, thus there must be a reason. I stand five years out and here are my list of “reasons”: 1. This blog 2. Defeat Goliath 3. Helping others who have been diagnosed with brain cancer. Or 4, I don’t know as it just hasn’t happened yet. I am not sure what to think about 1 and 2, so let’s talk about number 3. Helping others is something that I truly do enjoy. Information about brain cancer is not clearly defined and can be difficult to understand, there is not a set road map that should be followed by each person. Many of the same treatment options have remained unchanged for 30 plus years – some scary stuff! Doctors have different takes on what should be done and some centers recommend different types of treatment, not because it is the best but because that is the type that their faculty can offer. Toss in insurance issues and needless to say, it can be a bit daunting. Providing any type of guidance, support, a listening ear, etc. is very rewarding to me personally. If I can make a small difference, provide some reassurance or even just be able to understand somewhat the emotions of the brain cancer warrior and loved ones, then that is a victory. The only downside is that along the way I have met people where the cancer was not controllable. This is where things get hard, frustrating, and downright depressing. At times I have been left speechless with nothing to say but tears rolling down my face. My list of warriors extends outward not only through personal connections, but through blogs, tweets, and other forms of social media. When other brain cancer warriors have setbacks or in some cases die, it is like a part of my own hope is chipped away. My hope gets attacked a little bit and it’s challenging for me. I look at is as if they can do it, so can I, so when someone is struggling, it’s hard and my hope fades just a little bit. As Louis Zamperini says “Hope provides the power of the soul to endure.” Thus anything that can attack that hope is very dangerous. Don’t get me wrong, I wouldn’t change things for a second in terms of being a resource for people, despite the fact that sometimes things don’t work out how I would like them to. Miracles do happen! And even if they don’t, we all can be better people because of the journey of another person. I am more often left inspired and more hopefully from others than the other way around.
I would like to think that Hope looks a little bit like this picture. My boys snowshoeing with me this past weekend in lots of powder and super cold temperatures. They make up my hope.
Which brings me to the whole point of my blog. Often it is said that so and so, “lost” their courageous battle with cancer. I think the point is to try and honor that person by pointing out that they battled hard or fought the good fight despite the overwhelming odds against them. I completely and totally realize that by using that language, people are only trying to praise the person who died from cancer. Heck I am sure that I have said that many times about my own Dad. But now I see things a little bit differently, I have an issue with the concept of “lost”. Yes a person may have died from cancer, but hey all of us will die at some point. We all will “lose” at some time in the future. So I feel like when we use the term “lost” to cancer, it sort of implies that the cancer somehow “won”. I now recognize that if a person, who may have died as a result of cancer, brought people together, inspired others, showed what it means to be courageous, and never quit, then in my view they have not lost anything, but gained so much more. Those around them also have gained a ton, they have been forever changed by the person’s spirt and will to live. Let’s not think of things in winning and losing, but how did we grow, how were we inspired, how did we change for the better as a result of this. We grow through adversity, how we respond shapes us all at our core and shows us who we really are deep inside. Cancer is adversity, when it’s you or a loved one. Cancer challenges us in all kinds of ways, from physical, to mental, to attitude, financially and more. We and those around us will forever be different because of cancer. Really all that cancer did was speed up the normal process of life, it didn’t win anything. Technically we all have “lost” once we are born. (As a side note, I do acknowledge that this brings up a entirely different conversation about the afterlife and heaven, but I will save that as that is not the focus of this blog post.) Back to my point, I think to use the term “lost their battle with cancer” does not do that person the proper justice, as it implies that cancer is the “winner”.
I think about the results of my Dad’s cancer, in the end, yes he did die, but in the process, he inspired his two kids forever, he strengthened bonds of family, friendship and love, he encouraged an entire community to rally around him and his family, he restored some family connections that remain tighter today then ever, he showed what it means to be courageous, and was able to tell everyone close to him that he loved them. That doesn’t sound like losing to me. To me he won, not cancer. And in many ways I won, having the privilege to see him respond to the challenge of cancer.
So if you know someone with cancer, whose body gives out, just be careful saying they “lost” to cancer. As from my vantage point, I haven’t seen anyone who “lost” to cancer. What I have seen is amazing people, being courageous, inspiring me, motivating me, and in the end being victorious.
I do wish I had some other better phrase to use to honor our friends and loved ones, who died as a result of cancer, so I am open to ideas and suggestions. How can we create a better term or phrase to truly honor a special cancer warrior, without acknowledging cancer as a winner?
OK so this post started out as a complete rant, but also has some good news. Although I have known for a few months, I recently received the “official” notice that my oncologist is leaving UW and heading to Arizona for a new opportunity. Not good news in my book. I really like my oncologist and he has always been great about giving me the facts and then allowing me to make my own choices. So to have change in doctors is frustrating and a little bit nerve racking. (I am coming up on my 5 year anniversary of my seizure, which was the start of this wild and crazy ride that I have been on). From what I can tell, UW is making several changes, so I am not really sure what will happen or who my new oncologist might be. I know who I would like that new person to be, however I am not sure what UW has in store. I will find out more at my next MRI in December. I have spent the last five years telling people to move over to my oncologist because he is the best in Seattle, but now I feel a little bit vulnerable as now I will be missing that key resource. It is a change as I have always felt like I have had more information than many people in similar cases, like I have had this special edge. But that might be changing.
In order to try and make sure I am in a good spot, I have been asking other people, who are in my shoes what they are doing. I also thought I should look into Swedish – as they are the other hospital in Seattle with top notch resources and outside of the UW/SCCA group they are really the only other local choice. I do know one of the surgeons over there pretty well, thus I thought I would do some research on the oncologists. They recently brought on a new neuro-oncologist, whom I have not seen at events or really heard about. So I called over to Swedish to see if they were taking on new patients, etc. I asked if I could schedule a time to “interview” the oncologist to see if he would be someone I want to work with. The person I was speaking with, was a little bit shocked by my request. The response was well you need to be a patient to meet with the doctor. Meaning I would have to go through the new patient setup and have all of my records sent over to Swedish. My response was, “well I am not sure that I want to be a patient and I don’t want to waste the doctor’s time reviewing all of my files and data, when I may not become a patient at all.” In my head I wanted to say that actually your surgeon has a USB drive with all of my latest MRI’s and has been already giving me some unofficial second opinions for a while now. The person on the phone explained that they would look into this and get right back to me. Over a week went by and still no follow-up. Thus I finally called back to see what was going on. I got a hold of the same person, they put me on hold and checked with a colleague and came back with the response that no they don’t allow doctors to just “meet” with people and/or be “interviewed” to see if someone wants to work with them. Their doctors just don’t have the time for that. I have to admit, I was pretty mad when I got off the phone. Right then it was going to be no Seattle Brain Cancer walk in 2017 for Team Defeat Goliath. No more supporting Swedish and the Ivy Center. Furthermore I get that doctors are busy, however I am the one with terminal cancer, I am the one who doesn’t have time. I was ready to go on the attack. The medical world should work both ways, I think patients should be able to explore their options and not be forced to become a new patient. I understand there are costs involved, but in cases of terminal cancer, I think there must be exceptions. I was ready go crazy with my limited reach on social media. Fire the venom from Twitter, etc. Pickett the walk and try to get donors to send their funds elsewhere.
Then about 20 minutes after I hung up, I received a call from the Seattle Cancer Care Alliance, it was from their person who works on relations with insurance companies. Premera had reversed their decision on my case and my proton radiation was now approved. I asked if that meant they had changed their stance on proton as a whole – meaning this would impact many others – nope, they just approved my individual case. Which is great news. However I am still a little grumbly that others won’t be approved. In my case, I opted for proton over standard treatment because I was concerned about future cognitive loss and I didn’t want the full impact of the side effects from standard radiation. Well, I did my six weeks, managed to not miss any work. Side effects were minimal for me. My first MRI showed Goliath was smaller, thus it can be said that proton therapy worked! And I would say that I am the perfect test case for why insurance companies should be approving this therapy for all. Granted the hope is not cognitive issues down the road as well.
I know that someone is going to ask how will that impact me from a financial point of view, and the answer is not much, however it means that SCCA will now be reimbursed for my treatment as I made a deal with them that they would cover all of my costs, past my normal out of pocket expenses. Thus I am on the hook for those regardless of my insurance. But a huge win for SCCA to keep money in their pocket!
Which brings me to the final part of this. Since Tuesday is Election Day, I thought I would give some thought to Obamacare (Ok I started this prior to the election and, based upon the results it will most likely be gone, but I thought I would leave my thoughts out there anyhow – updated slightly):
There are two things it does for me that are huge;
- Lifetime Limits: It removes lifetime limits on insurance. Since I plan on living for a while, this is big because in all likelihood my life will be a continuous battle with Goliath, meaning that I will be in and out of treatment moving forward, thus a lifetime cap, might have come into play for me. Hopefully my “clock will be reset to Zero” meaning if limits are back at least I will not have to include 12 months of chemo and 6 weeks of radiation.
- Preexisting Conditions: Without this I am completely uninsurable, if I were to switch plans. Thus I would be held captive forever by my insurance company. Both of these items would have the potential to financial ruin myself and my family. For those reasons I like Obamacare.
Granted there are many flaws with the current system and it has to be modified for it to actually work. However I am grateful for these items. However the costs are getting crazy, I do see that first hand. I am on the team that works on my firm’s healthcare plan, so I have been well aware of the crazy price increases. It’s a little bit humbling seeing the increases and knowing that I am a big reason why, they have gone up so much over the years.
Here are the things that I think must be looked at to make healthcare better and more affordable.
- Remove IRS as the score keepers: As a CPA, I do not like the fact that tax returns are used as a way to enforce this and hand out penalties. I do not think this should be part of the tax code. The tax code is constantly being used to social issues and welfare, when that is not what it should be used for. It should be used as a system to pay federal income taxes and that is it. I completely understand when the tax code is used, since it reaches just about every US citizen. This won’t matter if Obamacare is gone, but I had already written this, so it stays.
- Empowerment of the Patient: I feel like in today’s medical environment, you go to the doctor, they make a recommendation and then you follow it. What gets approved is all based on western medicine, what insurance companies will reimburse for and how they can best not be sued. It’s time to expand the options. I have talked, written and spoken constantly about being your own advocate. And I find that sad at times, patients need to be provided with all options that are available so they can make an informed decision. I don’t think that “blind trust” should exist in the medical world.
- Price Transparency: This is the biggest key, in my opinion to making healthcare affordable. Name another industry in which the customer is not aware of the costs or not given the price of a product or service before buying it. The answer is nothing else. You go to a doctor and you are never told of the costs of anything you receive. Patients are never given the option of choosing the less expensive protocol, it is all just based upon whatever the doctor recommends. I think most people would make wise and both health and costs conscious decisions if they were to be given all the facts. As a patient, you are not aware of the actually costs of things until you receive you EOB (Explanation of Benefits). I can tell you from experience, they are not the easiest forms to digest! The only reason I can think of why patients are not informed is because everyone would think that the hospital is only recommending the cheaper option to save money! As a patient, the treatment options we accept will hit our bottom line at some point and I think, if given the chance, people will make good decisions that would help to decrease healthcare costs. If you would present me with two treatment options that provide similar risk and similar results, I would for sure choose the cheaper option. Yet patients are never given the results. I truly believe that if patients had to be provided with the costs of procedures as part of the medical process, prior to engaging in treatment, I think our healthcare costs would decrease dramatically. Yet we have no idea what things costs and how our financial situation will be impacted until after the fact. The only time I ever had a conversation about money in the past 5 years was about how the SCCA would be covering my costs of radiation and they informed me of my financial obligation and I had to sign paperwork about it. Honestly I was glad to do so. I felt empowered about knowing exactly what I was getting myself into. Let the patient in on the costs, so the patient can be part of the solution!
OK so I am finished. No I am not going to try and boycott the walk this year. I am going to meet with my team in about a month, figure out what is going on and then make the best decision I can. In the meantime, I will continue to harp on empowering patients not only with their care decisions, but also with healthcare costs.
Last October, Jess and I attended the Snoqualmie Valley Young Life Banquet. We had a fabulous time, hung out with amazing people and helped support a great cause. For us, it’s even more exciting as this summer Colby will be able to participate in club this summer (he has already been to a couple events!) (Scary as Middle School is now upon us!)
The truth is that despite the fact that Young Life was not at my high school, it still had a huge, profound impact on my life. I had the chance to go to Malibu when I was in high school. I had several close friends that went, yet I declined to go. I delivered pizzas instead to earn some extra cash. Yep not one of my best choices ever. However even though I declined, Young Life was still able to find me, it just took a couple more years…
My junior year of college, I was home for the Apple Cup. It was Leaf vs. Huard. The Cougs were looking to go to the Rose Bowl. A friend of mine, Jacob, got me a ticket in the student section. Prior to the game I met up with my sister as she was also going to the game. We were both together – a difficult thing to accomplish at that point in both of our lives. Since we were together, the bombshell was dropped. My Dad was diagnosed with cancer. It was advanced and he was given a year to live. As I know some of you might be curious – his was in no way related to the type of cancer I have. I know I have repeatedly said that rule number 1. of a cancer diagnosis is never Google it and then rule number 2. is to never believe your doctors when they tell you how much time you have (they really have no friggin idea). That said, the news was not good. We knew that he hadn’t been feeling very good for a while, but we would have never guessed that it was cancer. Anyhow, the game was played, the Cougs crushed the Dawgs and went on to the Rose Bowl. Leaf was the number 2 pick in the draft (that didn’t work out so well). I went back to school in Forest Grove, Oregon. Being at school, I missed a lot of what was going on with my dad battling multiple myeloma. Because it was sort of “out of sight, out of mind”, I think I just suppressed all of my feelings and emotions about everything and just stuffed them away so that I wouldn’t have to deal with them. In the Spring, we had planned a big birthday trip for my 21st. He wasn’t feeling good, so it had to be pushed back. I remember that being a tough few days for me. Most of my best friends in College were all younger then I, thus it was an uneventful birthday. He rebounded in May and attended Keri’s graduation. That was a great time. Probably the last great time the 4 of us spent together when he still felt good. It was fun to see him smiling again. Just before wrapping up my junior year, I received a call from Andy Martin. Him and I go way back and have been friends forever. He had been working to set-up a Young-Life Club in the Valley. He was going to take group of just graduated high schoolers to Beyond Malibu. Malibu is a camp that is located in the Jervis Inlet in British Columbia. Basically it is only accessible by boat. To get there, you drive up to Vancouver, BC, take the Horseshoe Bay ferry across the bay then drive to place called Egmont, where you then take a boat up the Jervis Inlet, where you then turn into the Princess Louisa Inlet, where you then find this amazing camp called Malibu. The inlets are in the middle of the BC Coastal Range, thus there are 6,000 to 7,000 ft peaks that rise right out of the water all around. Beautiful doesn’t even begin to describe this place. Malibu has two camps, Malibu and Beyond Malibu. Malibu has cabins, structures, and all kinds of cool things. It is an amazing place to go to camp. Beyond Malibu is nestled back in the inlet and is made up of some rustic cabins and is used as a launching point to send groups out into the wild of the BC Coastal range.
After we arrived, we met with our guides (two guides are assigned to each group) We actually had 3 as we had a guest guide for the trip! – more on the importance of this to come. Next we completed a ropes course, then did a gear check. One of the questions that our guides asked us was “Why are you here?” I remember Andy’s response was, because I am supposed to bring David here. My response was because he (Andy) told me to come. It was as simple as that. Our climbing objective was Mt. Pearkes, which is 6,078ft tall. We left early from the Beyond Basecamp via boat. We were all locked and loaded. The boat literally just dropped us off on the shore. The boat had a gate in the front, where the driver would just drive to the shore, the gate would be lowered and we all then walked off the boat onto the shoreline. The boat then left and you realize that you are now on your own for the next week. Let the hiking begin. I won’t bore with each and every detail, however each day we would hike and move to the next camp area. The trip culminated in the summit of Mt. Pearkes. The views were stunning and spectacular the entire trip, mountains stood tall breaking out of the water all around. The view would go from the water to the tops of many peaks that topped out between 6,000 and 7,000 ft. We had perfect weather the entire trip, it was sunny with clear skies. It rained for about an hour, when we boarded the boat to go home, but outside of that it was perfect conditions. The climb also featured snow travel at the top, a fixed line, and some roped up travel. Nothing being very technical, but still lots of fun and an amazing experience.
Pictures taken from Shawn Carnes on his 2016 trip to show the beauty of the area. He was on One Eye, so not the same mountain, but every mountain up there is beautiful.
One of the days was sort of like a rest day. We were told to spread out on the mountain and just have some personal quiet time. You could read, write, pray, sleep, whatever, but they wanted everyone to have some personal space to reflect. The weather was gorgeous – blue sky and the sun was shining. We were in an open area on the side of the mountain, looks of open space with rocks. I found a nice place, brought my bible and hunkered down. The next several hours, I went through this period of reading, sleeping, prayer, conversations with God and dreaming. It was truly a vision quest. A period of gut wrenching, sole searching for me. I was trying to really figure out this God thing and deal with my Dad’s cancer. I felt a little bit like Jacob, who wrestled with God in Genesis. I had demanded my miracle from God, I wanted my Dad healed. The reasoning was simple, lots of people have gone through miraculous healing, now it’s my Dad’s turn – a simple request. I spent time reading first and Second Samuel – the story of David. I actually think that he is the most interesting character in the Bible. He was a boy destined to become king, he was an incredible talented musician and a warrior. Yet he also repeatedly failed in many aspects of his life. He committed adultery, murder, he performed cover-ups to hide his misdeeds, and in many ways failed as a father. Yet despite his short comings, God refers to him as a man after his own heart, repeatedly and often. He provides us a “real” story about life and the ups and downs that we all go through. Yet one thing that David also does, is come back to God and admits his failure. He is a great example of the grace of God and how forgiveness and reconciliation should work. He was forgiven by God, but did pay a steep price for his mistakes, from the loss of a son, to a rebellion by his children, and God telling him that he will not be the one to build God’s temple. But through it all he was loyal and God was with him. After my prayers for healing and a miracle, I did receive an answer, the dialogue went sort of like this:
Me: Please heal my Dad, let him live.
God: Your Dad is going to die, it’s his time
Me: But there is so much more I need to learn from him
God: He has already taught you everything you need to know.
That was it, the request was denied. The reality was going to set in over the upcoming months. The truth of the situation was that a miracle did happen on that mountain, it just wasn’t for my Dad, and it was for me. The only reason I was on that mountain, was because someone was told to bring me. During the trip, each person was given the floor to tell their own personal story of their life, of their faith, really of whatever. If my memory is correct there was 10 of us on that trip. I was one of the final three to talk. Although I didn’t really talk much, I pretty much just broke down and cried. All of the stuffing of my emotions the last year because I was trying to avoid them, just came out and I was a mess. It was what I needed, just to sit there in sadness, to be weak, to let out my feelings and to be real. To get to this process it took months and a trip to Canada to get me to where I needed to be. The final three to speak from the group all had stories to tell of the impacts of cancer on their fathers. From Katie who lost her Dad to cancer at 16, to our guest guide (whose name escapes me – ugh! I can picture her in my head though) she had guided the past couple of summers, but came back on this trip as she needed an escape as her Dad was nearing the end of his battle with cancer. She was from Vancouver, B.C. It was like I went from being on this lonely island dealing with things, probably the person to best relate to was my sister, but she was in Pullman and I was in Forest Grove, Oregon, which made that hard. I am not fond of talking on the phone, especially about my emotions! But, all of the sudden, I was being surrounded by two amazing people who could related to what I was going through as they either were there or had been there before. Conversations with them was huge. I can’t express in words how big a moment that was for me. It is a big reason why I have the passion I do now to talk with others with brain cancer. Until you have been there, it’s hard to relate, hard to understand, and feel the pain, the confusion, the anger. The sequence of events on that trip up to the summit of Mt. Pearkes was not happenstance, it was not random, it was not luck, it was divine intervention and it came at a time when a broken down 21 year old needed it the most. That was the miracle that happened. My belief is that somehow my Dad took a pass on his miracle that day.
The following year, I went back to Beyond. My Dad past away that October. My Aunt and Uncle had sent me a check to help cover the costs and told me to go back. So I did. This time I was again with my buddy Andy. That year when asked why he was there and what his expectations were for the trip he said. (paraphrased) “I know this mountain will not challenge me, but you all will.” Famous last words, instead of perfect sunny weather, we endured a week of pouring rain, had to dig in an emergency camp as we were totally stuck in a whiteout. It was so bad that you felt like you had vertigo as everything was completely white. It is still to this day one of the worst whiteouts I have ever be in throughout all of my trips and climbs. Although it was a physically tough and mentally challenging trip to deal with horrible weather that year, we still made the summit, but could not see a thing. One big key to that trip is that there was also a girl on that trip who was a Young Life leader with Andy. She enjoyed going into the mountains and loved to hike and climb, her name was Jessica Thuot…
There are some times in your life where you are completely blown away by the generosity and support of others. June 20th did not disappoint and was for sure one of those moments for me. A huge round of applause to the Gryphon Warrior Group for putting on the event, and a big thank you to everyone who showed up! The event was sold out and I think that everyone who came had a wonderful time. Thank you doesn’t seem like enough, but it is sort of the only words I am left with. One of my first thoughts was that I am not worthy of all this – it all feels overwhelming. Yes I have been dealt a crappy hand, however through my journey I look around and see others with an even worse hand than me. It’s almost like I deal with survivors’ guilt about my diagnosis versus others who are in the same battle, but starting from a worse point. As I started writing down some of my thoughts, my mind told me that I have written about this before. Sure enough here is part of a blog I wrote on December 17, 2011 about the challenge of receiving. When receiving, you are required to humble yourself. Which is hard to do. You have to admit that you are at a point of weakness. That you need help. The truth is we all need help. I believe the idea that we will just “do it (life) alone” is a myth and a lie. But dang it’s hard to accept that fact at times. In many ways true strength lies in the ability to not only acknowledge that you need help, but also to be willing to accept the help. Being meek is far superior to being strong.
18Pride goes before destruction,
and haughtiness before a fall.
19Better to live humbly with the poor
than to share plunder with the proud
Here is part of my blog that still rings true today:
“I think through this entire process God is trying to teach me many things. Currently it is about receiving. The support and love that we have received has been mind blowing, humbling and truly amazing – from our families, friends, church, work and even from people whom we don’t even know. We are so thankful, blessed and honored. I think back to when my Dad was going through treatment and the next step was to perform a stem cell transplant, however our insurance company would not cover that procedure, so some amazing people in the Valley rallied, started fundraisers and raised the necessary money to allow the procedure to go forth. One day I went to Ixtapas in Duvall with some friends and as we went to pay, there was a jar on the counter with a picture of my family asking for support to allow for the stem cell transplant. It was a weird, difficult, and humbling experience for me. Unfortunately he was never healthy enough to go through the procedure, but the funds were used to cover medical expenses and then were used to help fund the Kyle Warren Heyting Memorial Scholarship that is still given each year to a Cedarcrest High School Senior. I would much rather choose to give than to receive.”
The Colby update. On the night of the auction, Jessica ended up taking Colby to the ER at Children’s Hospital. He had fallen and hurt his elbow over the weekend. His doctor thought that the bone might be displaced and that he might need surgery as soon as possible. Thus the trek to the ER. Luckily it turns out he didn’t need surgery, but does have a fracture and will be in a cast for a little while. Thankfully, Colby has has a great attitude. It did make for a crazy night, and was very unfortunate that Jessica was not able to make it to the auction, but I know she also feels the overwhelming generosity, love, and support from everyone.
To those that heard me share my story, I do have an update on my conversations with the Seattle Cancer Care Alliance. They had a meeting with Premera (my insurance company) and were hoping that they would be able to reach a deal on coverage for Proton Radiation Treatment. However, the sad news is that meeting did not go as they had hoped. In fact they are feeling that Premera is digging in their heels a bit on this. That was disappointing to hear. As a point of reference they just reached a coverage deal with Regence/Blue Shield to cover Proton Treatment. It is also covered by Medicare and for anyone under 18. This makes me feel like things are in limbo a little bit. They will still be working with me from a financial point of view, however I know I was hoping that the whole insurance issue would be resolved quickly. I also think they thought that this would have already been handled as well. Especially since I have already received the treatment – it’s not like I can “take it back”! But as I mentioned at the auction – I do think everything will work out in the end. However being a CPA, with financial things being left unclear, it makes a stressful thing for me to deal with.
The SCCA is now working on their own game plan to find the best way to go about putting pressure on Premera. I have asked to be a part of that process. So I will now await my “marching orders”, which could be heading to Olympia to speak with lawmakers, helping with some radio ads, a social media campaign or maybe some letter writing. Whatever it may be, I am totally on board and ready to do everything in my power to pressure Premera to do the right thing.
Again a huge thank you to Scott Montgomery and the Gryphon Warrior Group for putting on the auction. I know that they will continue to do amazing things and help to change lives! They will be running the Ragnar Relay in July so if everyone can wish them a fun time and great success during the run that would be awesome!
Well I have to say the 6 weeks of proton radiation treatment went by pretty fast. So I can’t complain too much. Chemo was soooo much worse! Not even close. The people at the center were super nice, very professional, and they work hard to make the experience as good as possible. It felt like lots of driving as I headed over to Northwest Hospital 5 days a week. The drive there and always the drive back each day took longer than the time I was actually being treated. I did get to enjoy the new 520 Bridge so that was fun (the toll each way was not however). I was impressed by everyone there. Overall, I have felt pretty good. Fatigue has been the most noticeable side effect. Although, I also think I went through a period of increased stuttering. However that appears to be getting much better now. I think I am more critical of myself then how other people view the stuttering, thus I probably make it a bigger deal in my own mind then it really is. My mind tells me that this week it has drastically decreased. I have lost my hair, but only where the radiation hit, so I view that as a good sign, the radiation worked as advertised – only limited to a small area, not sending radiation all throughout my brain. Yes my insurance turned me down, but SCCA (Seattle Cancer Care Alliance) is working on resolving that and I have feelers out to some of my contacts at the Fred Hutch to try and find out how I can help fight the battle against the carriers that are turning down treatment options. They need patients to use the center not only to increase survival time, but also to show that it works. If you are under 18, insurance companies will cover the treatment, just not if you are older. It makes zero sense.
Yes the top of my head is a little sore and sensitive!
My mask so they could line up treatment correctly each time. It would lock my face in so I couldn’t move to make sure the radiation hits the correct areas.
Honestly the most challenging part of the entire experience was seeing the kids going in and out for treatment. Talk about heart breaking. Since treatment times were pretty consistent each week, I would see the same people each day going in and out of there. There was a girl who was being treated about the same time as me (she was probably in the age range of 12-14). I learned that she and her family had come over from Montana for treatment. She had lost much of her hair and had a very cool scar that zig-zagged on the side of her head – (it was cool in that if you have to have a big scar on your head, it might as well look gnarly and tough!) She was a warrior for sure! Her last week was the same as mine. They do a little party each week for the people who finish up treatment. There was a little boy dressed up as a teenage mutant turtle – that was cool. At the party, his grandmother said thank you to the staff and it quickly turned into a stream of tears. The Center has bracelets and necklaces that the kids can make and add beads for each week as they move through treatment. I thought that was pretty cool.
The hardest day was one of the rare days where they had a delay and had to change my treatment time. I ended up going in the afternoon instead of mid-day. The Center has a large, very nice waiting room. It also has some smaller waiting rooms inside that allow people to change (if required) prior to going into the proton rooms. As I was waiting in the inside room, I could hear a child yelling “I want my Mom!” In a scared, full of tears voice. The voice could be heard throughout the center and just flat out sad to hear. It left me with a feeling of pain and sadness. That was tough…
Event on the Horizon!
Some pretty amazing people have set-up an auction for Defeat Goliath. If you haven’t gotten your tickets, do so quickly as tickets are going fast!
Details can be found here:
Hope to see you there!
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.
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!
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.
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.
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…
Sunday, May 1st is the Seattle Brain Cancer Walk. The walk has always been a special day for me. A chance to be surrounded by people who love and support me. It’s a chance to help raise some funds that go to support the Ivy Center at Swedish (a huge portion of the entire operating budget of the Ivy Center is raised by the walk each year). It is also a chance to connect and reconnect with others who are traveling a similar path that myself and my family have been on the past several years. Since 2011, I have made friends, had treatment conversations, and have kept in contact with many of these amazing warriors against brain cancer. It is hard to describe the instant connection you can make with other brain tumor warriors. You can instantly understand the shock, the fear, the questions, the seizures, the grief, the chemo brain, and everything else that comes along with brain cancer. For me, I have realized that some of my hope rides with many of these people. I read their blogs and stories, and I am brought right along with them. I feel the victory of a stable MRI, the celebration of a finished treatment cycle, and the hope of new treatment opportunities. On the flip side, I also feel the pain and angst of the MRI report that says the tumor is growing again, the challenges and side effects that come with treatment, the pain of the setbacks and ultimately the loss of a fellow warrior. That is the hardest part, but I have also felt so much hope being surrounded by family and friends at the walk these few past years. I hope you will decide to join us this year!
The 2016 Walk, will be reminiscent of my first walk in 2012. At that one, I had started a chemo cycle the Monday leading into Sunday’s walk. After the walk I skipped the family lunch and went straight home and slept for 3 hours. That cycle had proved to be the most difficult one for me of the year I spent on chemo. This time around I will be starting proton radiation on April 18th, so I will be two weeks into treatment when the walk takes place. I am hoping to feel great, but time will tell.
It would be great if you want to be a part of Team Defeat Goliath for this year’s walk. You can either register to walk with us or you can donate to the cause. Either way you can click on this link to do one or both. Team Defeat Goliath