Encore

So here we are again. Allllllmost made it 9 years. 9 years is a long time. 9 years with GBM is basically a lifetime. Allow me to welcome back those that were with me on my first tumor journey (and thanks again) and hello to all the new friends that are just joining me for this one. I decided to brush off this old blog to use as my go forward updating tool so everyone can read or re-read what the first time around looked like. If you followed my first journey, you will know that I will always be real no matter what: the good the bad and the total shit.. so here we go.

I'll start by saying that I am physically and mentally ok. The initial shock was a lot to take in and I knew this was always basically inevitable, but I also kind of thought / hoped I had dodged the bullet. I found out the tumor was showing recurrence a few weeks ago. After my standard grace period of 24 hours for moping and sorrow, I immediately got back to work. Being that this is my second time around the block, I feel so much better prepared and already knew what I needed to do. I changed my diet back to low carb / no sugar / whole foods (and yes I look more skinny than before, but I assure you I am stronger and more healthy now than I have been in a really long time. Just a few days ago, I completed the hardest climbing route I have ever done in my life so please refrain from commenting on my weight if I see you), I am back on heaps of supplements and therapies, physical activity, yoga and mental wellness are my pillars. I am also intermittent fasting and have a single 5 hour window where intake all my calories. I am feeling amazing right now! Being prepared and knowing what to do is half the battle and only one side of the sword. Having been through this means I also know how much it is going to suck. It will be long and there will be pain, but I am confident that I will get through this again and I truly don't think that I am quite done with this little journey that we call life.

This past summer has been one of the most transformative summers of my life in so many ways and also has greatly shaped me for this not-so-good news. I've also very recently met some really amazing friends that truly care about me and it has been great to bring them into my circle as I go down this road again. Back in July I went to an Ayahuasca Retreat where I drank the medicine 3 nights in a row. For those that have done it, I am sure I need not explain, but during those three ceremonies I opened a completely new part of myself and an understanding of what life and death truly is. It is hard to explain what happened during those 3 nights, but I will say they completely changed me. It was hard, it was painful and you are forced to feel and experience things that you really don't want to, but in the end you come out...different in such a beautiful way. To boil it down to the two of the core concepts of what I experienced and things that everyone would benefit from understanding is: 1) As cliche as it sounds, all that matters is love. 2) We are all connected. This retreat also pushed me into a substantially more spiritual person where I am now open to hearing what the silence wants to tell me. The first time I went through this I was always trying to fill my days. It was always seeing friends and keep my mind occupied to avoid the thought of cancer. It was great and I know needed that back then, but this time around I have found so much peace and tranquility in silence and mediation. This has put me completely at ease with whatever the result of this may be. I am fully prepared for whatever may come of this and I genuinely have no fear of death. I have found that the one thing that is hard at times is being alone in the in-between times. Having someone you love there for a hand to hold when things got tough was such a saving grace. This time when those moments creep up I have to face them alone. I feel like this is making me stronger, but also not ideal. So any ladies looking for a bf, hit me up :)

This recurrence was truly out of nowhere. There were no symptoms, nothing that was a cause for concern and definitely no seizures. For those that don't know, I have been doing MRI's every three months (up from every two months for the first 4 years post-op) to monitor the tumor. Once the MRI is done, I have a follow up call with my Dr. to review the scan. They are usually quick and easy and we are done after less than 10 minutes. Since COVID started, I have been doing them virtually and they are usually even faster. They always begin with a nice greeting and a brief chat on whatever the topic might be from my Dr. (Dr. Ambady at OHSU is Portland) and then it is followed by his normal line of "Ive reviewed your scan and everything looks good." Even though I have gone through well over 50 (I've lost count of how many MRI's I have now done) hearing those words always takes a weight off of my shoulders and allows me to breathe easy again. A few weeks ago when I met with him, I knew the second he got on the call that the bad news was coming. Instead of the normal greetings I have grown so accustomed to, the first words out of his mouth were "Should we talk about your scan?" I'll never forget those words and they have reverberated in my mind countless times since. I historically have been good about having someone with me during these follow up calls, but as I mentioned before I felt quite confident on this one so I felt that I had no reason to have anyone with me (and it was a zoom call at 10am on a weekday so I knew everyone was working). I really wish I had asked someone to join because the rest of the call was a bit of a blur. After the call I got to have the most amazing time (note: you will also find that I often use sarcasm to downplay tough things to relay) telling my family that we didn't quite dodge the bullet as we were all hoping. This led into follow up appointments, talking to a few hospitals as well as a second opinion just to cross off all the t's. I initially wanted to have my first surgeon, Dr. Chen perform the second surgery, but he has done quite well and is now the Chief of Neurosurgery at a hospital, but the hospital he is at is not equipped with the tooling and technology that would be needed for my surgery. After numerous conversations and getting a better grasp on what the new growth entailed, I decided to stay local and put my trust in the surgeon at the same hospital I have been working with since I moved to Portland. He is a confident and straightforward surgeon named Dr. Raslan and he has done over 300 of these things, so I'd say he is well versed. I met with him and it was determined that we will be doing this one awake as the new growth is right up against some pretty crucial areas of my brain that I would benefit not to lose. During our meeting he did advise on what could be a small bit of hope in that this new growth could possibly be late onset radiation necrosis. Although, he also said that this typically will show around the 3-5 year mark post radiation. I kind of chuckled and said well that sounds highly unlikely seeing as how we are nearly 9 years down the road. He responded, "Well what about you is going according to the book? You are already ahead of 99.99% of everyone else in your shoes, so everything is on the table with you."

Tumor and Surgery Info:

The tumor is growing in the back part of the tumor cavity and is small, somewhere around 1.3cm. In this case, size is irrelevant. The only factor that matters is the growth rate. The size could have already changed and December 1st, I had a pre-op MRI as well as an fMRI to trace activity in my brain. I decided that I don't want to know the results of this or the growth rate...yet. There are only two outcomes of knowing: It has either grown in the few weeks since my last MRI or it has stayed the same. Half of my options suck, so no need to place that bet. I want to have the last bit of comfort before my surgery, which is scheduled for December 7th (aka tomorrow) as stress free as possible. I might ask before the surgery because I am quite curious. The surgery will be performed awake so the surgeon has the ability to make sure all my motor and cognitive skills stay intact during the procedure. I will have to perform certain tasks as the tumor is removed and if I ever fail or can't complete a task, that will end the surgery and they will close me back up leaving whatever is left inside. Some may recall that not many surgeons wanted to perform my first surgery asleep, but talking through and understanding the process of an awake surgery, I decided I want to remove as much of the tumor as possible and deal with the consequences once I awake. For this surgery, I am told that doing it asleep would be a huge risk that doesn't necessarily need to be taken so I guess I will be awake. I am not afraid of doing it awake, in fact the scientist in me is a bit excited to see what its like to have someone tinkering inside my brain while I am conscious :)

The last 9 years haven't been terribly easy. Living in a statistical category that doesn't really exist has been difficult at times. I've told those closest to me that it has been hard to find contentment in my life knowing that there really is no reason I should be here today. I've talked to numerous other GBM patients and most are no longer here. Many of them had children, grandchildren, wives, husbands and people that truly depended on them where as I have a dog. Don't get me wrong, Banks is my child and I love him in a way I didn't know one could love an animal, but if I were gone, I'm pretty sure he would forget me after a few weeks. But seeing others lose their lives to this while I am still trucking along has been hard. Survivors guilt is real and when it is on such an extreme spectrum, it can be excruciating. Shortly after this all began 9 years ago, I felt a pull to do something with my life to direct it so that I can help others. And though I attempted in many fashions, there were a couple dramatic setbacks and ultimately things never quite aligned the way I was hoping. A big part of me might have been giving up, things got tough for a while when I lost my mentor and friends a few years ago when he died in his sleep. Years ago I said that I felt like this tumor was the universes way of telling me to get my shit together and follow the path it is laying out for me. Well I kind of feel as though I wandered from that path and this is a reminder to get back on that path. With everything that has happened in the last 6 months, it is hard for me to feel any other way. My first priority is healing and then I am back to work, hopefully before the New Year!

I really want to thank everyone who was with me 9 years ago and continues to follow me on this journey. I also want to thank everyone who is just showing up to the party and is here to support me in any way possible. I love virtual hugs, digital high fives, all the prayers, vibes, holding space and pixy dust you are willing to spare. Last time I know all the support helped and I know it will get me through this again!

I will continue to update this as we move through the process. I hope everyone had a great Thanksgiving and enjoys their upcoming holiday season :)

I CUT MY HAIR!

When this little ass decided to show up last time, I decided I would start growing my hair out once I could again with the mindset that a recurrence was inevitable and once the inevitable occurs I would cut it and donate what I could. Well nearly 9 years later, it is back it and the day to chop it has finally come. This is one of the only things I was really nervous about because the hair has really become a part of me. It has years of memories in the length and even though it drives me crazy and is a hassle to deal with, I am going to miss it. However, I take joy in knowing that the 25" I cut will be going to a great cause. But the worst part is now my sisters both have longer hair than me.