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
So I started this post back in September and I am finally getting around to finishing it up.
This labor day weekend was supposed to be the grand capping event to an amazing summer of climbing with my boys. The target was Mt. Daniel. Mt. Daniel is the highest point in King County and it just below 8,000 ft. tall. Although its a glaciated peak, it does feature a “scramble” route to its top, in which you follow a rocky ridge to its East Peak, where you can then traverse over to the true summit. I have actual climbed the peak before from both the ridge and from Daniel Glacier, and both of my boys are completely capable of summitting this peak from the ridge route. This summer Colby and Cade hiked up to Camp Muir (10,000 ft on Rainier), summitted Mt. Saint Helens (8,363 ft. with snow), and their big peak was Mt. Adams at 12,281 ft. They also hiked to the top of Bandera Mtn. and McCellan Butte (both are peaks off of I-90) . The planning for Adams started a little over a year ago, when they hiked up to Camp Muir for the first time (Colby was 9 and Cade 7). They got their first take of being higher up on a mountain and both thought it was lots of fun. Thus came the plan for Mt. Adams. We devised a training plan and got them excited about the trip. We got crampons and ice axes for the boys and we did some training in the snow this past winter. Everything working towards the Adams trip. I have led many groups up Mt. Adams – with lots of people climbing the mountain for the first time and I can honestly say they rocked it, no complaining, followed all instructions and communicated well how they were feeling. All of which are huge to a successful trip.
When Jess and I first met, we were always out on some adventure, hiking, running, climbing (granted not much has changed). Before having kids we typically heard comments from people like “I used to hike and climb, but then I had kids and haven’t done it since.” It wasn’t just one person, but quite a few. It was like having kids was a prison sentence. Once you have them, you can’t do any outdoor adventures any more! That’s it, its all over. We vowed not to be like that. We decided that having kids would enhance our trips and adventures, not end them. One of our first adventures with kids was a few months after Colby was born, we took him cross country skiing at the pass. He was bundled up and then placed in the front pack. We went to the Snoqualmie pass cross country ski area. After a while of skiing, it was time for him to eat, so we stopped at one of the seasonal yurts that they put up. We went inside and when I was opening up the layers to get him out a guy in the yurt let out a yelp. “Is that a baby in there!” he was in complete shock that someone would bring a baby up to the yurt. Colby had a bottle and then we were off. Over the years, they have done lots of outdoor activities that we both love. Things like hiking, rock climbing, running, mountain biking, skiing, camping and kayaking. They have done them all!
Over the years, here are some of the things that we have learned about passing on the passion of the outdoors to your children:
- Don’t under estimate what kids can do: One thing I have learned is that kids are pretty amazing, they can do way more than most people think. When it comes to outdoor adventures, kids can rock it. They have less fear than many adults and can be highly motivated. I think many people think that young kids are limited in terms of physical endurance and capability. However, I have found that not to be the case. Recently there have been several articles in several running publications regarding a family that has three kids who all have completed in ultra-marathons, some say that type of activity will harm growing bodies. The parents and the kids both shrug off those concerns and proceed to run long distances. In reviewing the articles, there doesn’t seem to be any hard evidence on either side to support it being harmful or that it is perfectly fine for young kids to do. I probably fall somewhere in the middle. I don’t know that I would want my boys at their age to run an ultra-marathon. Those things do put some strain on the body. However I also don’t think that them putting in a long day on the trails will do any long term damage to their bodies. I would rather have kids that are getting outside, getting exercise, enjoying the fresh air, then sitting inside playing Xbox or watching cartoons. Kids can do amazing things. Often times we fall into the trap of thinking, “Oh they are just a kids, they can’t do that.” However kids can do amazing things – don’t sell them short. Remember back to when you were a child and how you were always trying to prove to your parents, your teachers, any adult for that matter, that you were old enough and capable enough to do all sorts of things. Hiking is the same thing.
- Set Goals: Just like anything else in life, setting some goals and then working to achieve them is huge. I am sure that everyone reading this has heard some type of self-improvement/motivational talk that includes some form of goal setting as part of the recipe for success. Kids and hiking works the same way, set a goal, put it out there, and then figure out how to accomplish the goal. We put the idea of climbing Mt. Adams to the kids, they got pumped. We showed them pictures, we talked about how much fun it is to climb, and even better, how cool it is to glissade down from the false summit (glissading is basically a technical mountain term for sliding down in the snow on your butt). After the goal was set we then put together the training. The boys needed to add another I-90 peak to their list in McClellan Butte, a trip up the challenging Granite Mountain, then we also planned for another hike up to Camp Muir on Rainier, a trip to the top of Mt. St. Helens, all of which would lead up to climbing Mt. Adams. The boys were troopers. They were excited about the plan and worked hard to tick off each target from the list. Each time knowing that it would get them ready for the big challenge later in the summer. The goals kept the boys motivated and excited about putting in the hard work to prepare for the climb.
- Bribes are OK: The bribes for us started with skiing. We quickly realized that a few skittles, M&M’s or other types of candy, go a long way towards keeping the boys motivated to keep going. For each major hike, we always let the boys choose a special candy for the summit. Typically its Swedish Fish and Sour Patch Kids. It works! That is all I can say. Don’t let yourself get self-righteous and think that you are “above” bribes. At one point early in my role as a parent I was confident that I would not have to resort to bribes. I warn you, don’t do it! Don’t think that you are “above” those types of things. Remember pride always comes before the fall. On the ski slopes, its cold, it’s windy, you have tons of clothes on, it can really not be much fun. This is where the bribes work the best! Then you just apply the idea over to hiking. Let them choose and think about their great treat the entire time up to the top. I know that when I climb one of the topics of conversation is always about what type of food I am going to eat on the way home! For most of my climbing that special treat is an ice cold Coca-Cola! Nothing beats topping off a climb with an ice cold Coke! On the top of each mountain, we all enjoyed sharing in everyone’s special treat. You may call it a bribe if you like. But it works wonders!
- Have Fun!: This is actually rule number 1! Always have fun. If you make it fun and a great time they will want to keep coming back. This means that early on when your kids are young you might not make the summit, you turn around, eat the special snack (bribe), and go home! Don’t push them until the trip becomes like torture. Often times this is where parents go wrong. They push and push their kids until the trip goes from fun, to uncomfortable to just plain evil torture. Once it hits that point, you will start to lose them permanently. Granted you will get into points of a trip where things are uncomfortable and most of the time you just have to get your kids to power through them (see bribes as the means to do this). However you never want to move the trip over to the third category – torture. For us that has meant the following: trips up to the pass to ski where we only make one run then go home. A trip on Mt. Si were we turned back at Snag Flats. It means changing your plans to fit their plans. However if you focus on the fun it will keep them going back for more, and that is the ultimate goal – keep them wanting to go back. I know I hike and climb because overall it’s a ton of fun, thus they need to think it’s fun too.
So back to Mt. Daniel, we hiked in late in the afternoon and finished by headlamp to get up to our basecamp. The plan was to climb the mountain that next day, then spend another night at camp and then hike out early the following morning. We had a great time hiking up to basecamp. The boys think hiking by headlamp is awesome. The next morning we woke up to a tapping sound on the tent. I woke up and thought, that doesn’t sound like rain. So I popped my head outside and realized that it wasn’t rain it was snow, and a lot of it! We woke up to about 3-4 inches of snow on the ground. At first I thought, no big deal, we got this. However after realizing that I didn’t have any of the boys snow gear, I decided that heading up would be a recipe for disaster. So we turned around and hiked out.
Because we got snowed out, we went on another scrambling trip, the following weekend. I wanted to cap the year off with a great “boys trip”. So we headed to Mt. Rainier National Park. We scrambled up Mother Mountain and Pinnacle Peak. The weather was great. The boys did some cross-country ridge walking and then we descended a “climbers trail” that really didn’t exist. It was a wonderful trip with two amazing summits with continual views of Mt. Rainier and the boys got to experience some more of what scrambling in the Cascades really means. No clearly defined trails, crumbly rock, steep terrain, some scree, and stupendous views.
After meeting with my care team of doctors, the decision has been made in terms of how to deal with Goliath and its new growth. The plan is for me to go through a six week proton radiation therapy treatment.
After getting over the initial frustration of my last MRI and the reality that this battle is most likely going to be an ongoing issue I realized that, despite the growth, I am the victorious one in this battle. Aside from 100% complete surgical resection of the tumor, science does not have a known cure for my brain tumor. Thus, when faced with an incurable tumor, the only option (outside of a miraculous healing from God) is to live long enough for science to develop a cure. Back in 2011, proton therapy was not available in Seattle only photon (X-Ray) radiation was. The difference between the two is that proton rays cause less unintended exposure to radiation. They both have an entry dose of radiation, but proton rays do not have an exit dose. Granted with the older methods of photon therapy they would try to limit the radiation exposure, but essentially you are left with a varying amount of low dose radiation exposure to areas that are not the tumor.
When thinking about my brain, the idea of low dose radiation floating around in my brain was not something that I was willing to risk. However with proton therapy the idea is that I will spare the rest of my brain from radiation affects. I was against radiation 4 years ago due to the collateral damage, however, I am OK with the risk associated with the new technology. Granted they can only prove that they can keep the tumor from growing, but they can’t prove that it will extend my life.
The process of getting my brain mapped and the target paths designed takes a few weeks to get ready. That coupled with the fact that my insurance company needs time for pre-approval and the holidays it meant that I was looking at a February start date at the earliest. However, for my line of work, that is a horrible time to go into treatment. Knowing my own inability to rest and that I am not good at slowing down I have decided to begin treatment on April 18th. I will get the joy of a tax season followed directly by the joys of proton radiation! What a great start to 2016!! I will say that I am at peace with the whole thing and have done my homework and feel this is the best strategy for me.
And Yes I will be still doing my big Issaquah Alps traverse run/trek! People have asked me if that was still going to happen. Of course it will! Again, I really don’t know how to rest!
This past week was my MRI update day. Currently I have an MRI every 6 months to check on Goliath. For the past several years, its been an uneventful day. At this point I have had so many MRIs the past 4 years, I actually find my time in the machine to be relaxing and peaceful. If you have not had an MRI before, you are loaded into a machine that looks like a tube. The original machine at UW is tight, meaning that basically my shoulders span the length of the opening and I can fill the sides of the machine. Since my first scan, they have added 2 machines that are bigger and provide more space They place a cage over your face, give you a panic button and slide you in. For anyone that is sort of claustrophobic, this would be torture! During the scan the machine makes these terribly loud clicking sounds. For most people its a very unpleasant experience. I have actually started to find my time in the tube to be relaxing and peaceful. You are able to listen to music during the scan. My choice has always been Jack Johnson. I also have to have an IV drawn as during my scan they will inject contrast in me that helps to show any areas of tissue growth on the scan results. I was cracking up on this visit as for the first time in 4 years, I realized that the waiting chairs, where you wait to have an IV or wait to get called into the machine, actually have butt heaters in them! I laughed as for the most part I have felt that I was an “expert” at the MRI process.
I actually sent out a tweet about it. My MRI was on a Thursday, which in the brain tumor community on Twitter is considered #braintumorthursday. Twitter actually has been an important part of my cancer battle. I have been able to locate other brain cancer warriors and have been able to use it to locate other bloggers and during long sleepless nights when I was on chemo, I was given encouragement from random people whom I have never met. It was a great lifeline in the middle of the night when your support group is asleep and you are feeling awful, awake, and discouraged. Some props from some random folks on Twitter are a great pick me up.
After my MRI, I met with me Oncologist. On most visits I have to ask him to pull up my scans and go over them. However last week, he immediately opened up the results and started going over them with me. Not a good sign! I quickly learned that Goliath is on the move again. Although the MRI tech who actually reviews the scan before it moves to my Dr. rated the results “stable” which is what every brain tumor patient wants to hear. That was when looking at my last couple of scans. However when you go back to 2013, the growth is pretty obvious. It’s there and visible for even the untrained MRI reader.
It was a gut shot to me for sure. After I was finished with my Dr. I went up to the lab room and requested a disk of my scan. I have a copy of every MRI I have ever had. While I was waiting for them to make my copy I sat in a lobby area of the hospital and made my phone calls. While doing that I sent out another tweet. It said the following: “It’s #braintumorthursday, MRI day and the day I learned that I am not superman anymore”.
In terms of my next steps, my oncologist will be putting together a plan for treatment and will follow up with me next week. Basically, the time from MRI to appointment is only about an hour, thus not enough time to do the research, get collaboration, and put together a game plan. However it will involve recommendations of more chemo, radiation, or maybe both. I will be going back into some type of treatment.
Since I was diagnosed and Defeat Goliath was born I honestly have believed completely and without a doubt that I am the exception to the brain cancer world. The stats are grim across that board. Most people do not live to die of old age when diagnosed with brain cancer. It’s a reality and a fact. However during this process I have truly thought that I was impervious, invincible, and superhuman. Goliath would have no control over me. Granted I am well aware of the reality of this disease, I have read about it in other warrior’s blogs. I have even blogged about the crushing reality of losing people to it whom I have met along this journey. I also know that in almost every person I have talked to, read about, the reality is that the tumor will also come back. The battle is not a one and done affair, its a battle that features many wars and many battlefronts. However the tumor always comes back… Yet, if you were to ask me if I was different, I would say yes I am! Without a doubt, I am the person who will be one and done. I will be the person who will beat this thing down. One day I will be able to proclaim “I fought my enemy and smelled his ruin.” Yes that is me. Defeat Goliath is bigger than the tumor.
I think over the past several years I have lived this out. I don’t think that anyone who has met me, who didn’t know about my tumor, would have even guessed that I had been through something like that. From my professional world, to my world of hobbies, the tumor was a simple blip on the screen, a non-issue. My life was on track as if my surgery and a year of chemo had never occurred.
To clarify a common question that people have, I have never been in remission. I will never reach remission because the tumor cannot be completely removed. It will always be present. A part of it will always be with me. Like a volcano, I will experience periods in which the tumor is dormant, however currently, modern medicine is not able to cure me.
That has been the challenging part. The growth tells a story that I am not completely superman. I will not be one and done. Its going to be a battle. I had an ideal of what being the “exception” would be like and that plan has been erased. Hence, now I learned that I am not Superman. It’s been a difficult hurdle for me to mentally jump over. I am not invincible. The thought that maybe I am not the exception, I am not different. I am a stat just like tons of other people. I am not the outlier, but I am on the standard curve. It’s a hard pill to swallow. Honestly it’s difficult to put these feeling into words, but part of my way of coping with this entire process is leaning on that hope, leaning on that perceived reality that Goliath has zero hold over me, that I will crush this thing, but once again reality has crushed perception.
Thursday night we sat down with Colby and Cade, and Jessica and I told them about the results and the next steps. We asked if they had any questions or were worried about anything. They both looked at me and said “nope”. I then asked if they understand what this means. “Yes we do, you have already been through this before and got through it, we know that you can do it again. You are our Dad”. Ok enough said its time to not worry about things, they still think I am superman, which is good enough for me.
It’s time for round two…