Ten

TEN – Also the name of Pearl Jam’s first album. Note – the best “under the radar” track on that album is Garden. We all know Alive, Even Flow, Jeremy, Black, Once, and Why go, and Release has gained lots of traction as well. It’s sort of hard to find something “under the radar” on that album, but the answer is Garden. Yes, that is totally off topic. But hey, it’s Pearl Jam.

It’s been ten years now since I suffered a Grand Mal seizure at the U District Starbucks and ended up at the UW Hospital.  The 21^st of November marked ten years since I went through brain surgery.  I actually just re-read the analysis in my medical chart about the finding of the tumor. 

“Poorly-defined right posterior frontal lobe mass measuring 5 x 3.5 cm as described concerning for a primary brain neoplasm such as astrocytoma versus oligodendroglioma.“

Back then, the life expectancy for my type of tumor was 5 to 12 years.  I like to joke that I have 2 years left.  Although, most people (aka my family) don’t find this as funny as I do. 

In October, I was on a panel forum for people with low grade tumors like me.  There was a couple on the forum who are in the early stages of diagnosis and have been going through it all during COVID.  If brain cancer isn’t bad enough, going through it during COVID sounds just awful.  With really no visitors allowed in with you and with a not fully functioning brain, I am not sure how to take in all of the information that is thrown at you. I feel extremely blessed to have my story instead of one impacted by COVID rules. 

Here is Goliath Pre Surgery in November 2011

Post Surgery Staples and Scar

After the forum, I started to think about things I would tell someone who was just diagnosed with cancer. Here they are:

1.  Be your own Advocate:  This is the biggest thing- you need to advocate for yourself, do what is best for you, ask lots of questions if you are unsure, then press forward to understand and learn more.  Don’t just follow the doctor’s orders or the “standard protocol”.  The reality is that medical treatment is in constant motion, breakthroughs are happening, and more things are learned everyday in how to treat disease.  Even when dealing with your insurance company, sometimes you just need to ask questions and dig into things. I truly believe that I would currently be living with many brain function deficiencies if I had done what I was told back in 2011. Standard protocol was chemotherapy (Temodar) along with radiation. The radiation that was offered was photon radiation. Previously I wrote a blog about the difference between photon (standard) and proton radiation. In a nutshell, photon radiation causes much more collateral damage. In your brain, collateral damage is a big deal. My unofficial polling of people ten years out from standard radiation all noted that they have mental deficiencies that they all felt like they could trace back to radiation. I completely believe that had I followed the “protocol” my story would not be quite as positive. If something doesn’t feel right, then you need to speak up and do what you think is best. Then see number 3 on this list.
2. Believe that you are an outlier:  You need to believe that you are the exception – not the rule, you are the outlier, you are not bound by the statistics, the numbers, you are outside of all of that, you are a survivor, period. I think of two books by Malcom Gladwell: Outliers and David and Goliath. The stats are not good, however the world always has outliers and you are one of them.
3. There is no hindsight basis:  Every decision you make is the correct one based upon the information and knowledge you have.  There is no second guessing, no hindsight basis.  Every choice is 100% correct – there is no argument, no looking back. I think we often get caught up in the idea that if we just change one thing, then the overall outcome will be different. However we fail to realize that that one change actually changes the basis for every future decision. The best example is a football game. If your team loses by a field goal and your kicker missed a field goal wide right in the first quarter, you think if that ball goes through, the game would have gone to overtime. However that doesn’t take in account that every decision made thereafter would be made under different circumstances, thus that one change does not necessarily mean that the game would have ended up in a tie. We can’t isolate one decision and assume that all other outcomes are the same, as that decision actually changes every future decision.
4. Don’t Google your cancer, but do Google a support group for your cancer:  Searching your cancer can be super depressing, however don’t let that stop you from finding support groups and great blogs, resources, etc.  It is so helpful to be able to relate to people that have gone through a similar experience. Yes, I know that we will all do it anyways. Yes, I realize that everyone is thinking, this is a ”do what I say, not what I do” moment. Of course I Googled my cancer and looked at life expectancy statistics.
5. Learn how to read insurance statements:  Cancer is pretty overwhelming to begin with, but so is the mountain of paperwork – invoices that you receive from your insurance companies and care providers.  Learn how to match up and tie out your Explanation of Benefits Statements back to your care providers invoices. I know I discovered discrepancies several times. Often times, the providers send an invoice directly to me versus to the insurance company.  There were several times where I had to send additional information or invoices to make sure that things were properly covered. Maybe that is the accountant in me, but I strongly recommend this. Also, if you are someone who is good with numbers and can understand how to read the insurance forms, and you want to help someone going through cancer, this could be an amazing way to show your support and take some of the load away. I have had proton therapy rejected by insurance, Occupational therapy turned down, I have had numerous invoices sent to me directly and not through insurance and I had to push through approval for my helicopter ride – post rock climbing accident. Needless to say, I have had experience in dealing with insurance companies.
6. Seek and find an Advanced Brain Tumor Center for your care:  Many years ago, through my Kirkland Rotary Club, we put on an event. It was an A Capella night, in which groups from UW and The University of Oregon came and performed. It was a fabulous event, lots of fun and we raised some money for Brain Cancer advocacy. As part of that event, I was interviewed by the local paper. They put up a little article about the event and it had some details about me.  After the event, I received a call from a gentleman who wanted to meet with me about a project; he saw the write up in the local paper and picked me because I have brain cancer. I found out that he had been diagnosed with a GBM – which is a worst-case brain tumor. He owned a business and realized that he was no longer able to work anymore due to the cancer. He asked me to perform a business valuation so that he could sell his ownership to his partners. That was probably the most difficult service I have ever performed. During the project, we met several times and we talked about his experience and his treatment. He was being treated at a local hospital, nothing wrong with the hospital, it was just that he was being cared for by a general oncologist. Probably a really good one, but it was hard for me not to want to beat the drum go to a brain cancer center, to be seen by people who only work with brain cancer.  As far as I knew, his treatment plan was the plan that came from the standard playbook and was used once all other treatment options have failed to work. I bit my tongue as I didn’t feel at the time it was my place to saying anything, but I wanted so badly to yell:  Get a second opinion, go to a specialized center! I saw him at the next Seattle Brain Cancer Walk and we said hi and talked for a while, however the following year, I did not see him or his team. Some research later and I found out that he had passed away about a year after I valued his business. It was gut wrenching to find out that news. 

I move forward, still learning more about how to deal and how to cope, however all in all I think I have done quite well these past 10 years – feeling extremely blessed to have a low grade glioma as opposed to something much worse. I also realize that I am most likely repeating some of the stuff I have said in prior postings, however I think at this point, I don’t always recall everything I have written, however I do have a great excuse as to why: yes I have some brain damage – permanent scaring from the surgery.

DEH

DG

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