One year later.
One year that seems like a lifetime. This time last year I was laying on a table with my scalp cut open and a chunk of my skull sitting on a table. My doctor was filleting my brain millimeter by millimeter removing the deadly cancer tumor that wanted to take up residency in my thoughts. It had grown to nearly the size of a baseball before it was finally eradicated. After about 5 or 6 hours of resection he replaced my skull, threw a couple screws in, stapled me up and sent me into the ICU to recover. From the second I opened my eyes my new life began and for better or worse I was now a cancer patient.
I woke up already knowing it was going to be some form of cancer, I just prayed it was a low grade slow growing form. What it ended up being was just about as bad as cancer can get. I never wavered though, in fact I embraced it. I walked into my onco’s office the day of my appointment to find out what exactly it was they just removed from my brain and sitting right on her desk in plain site was my diagnostic report and before she could even tell me what it is I already saw the words Glioblastoma Multiforme written under ‘Diagnosis.’ I gritted my teeth and sat in the chair and let her break the news to me as if I didn’t already know. As she spoke to me I only partially listened as I was already planning my attack from the hours upon hours of research I had done on GBM’s already. From the moment I found out I had a tumor I decided to plan for the worst and hope for the best. In my opinion, and I think many would agree, it is much easier to hear good news after preparing for bad news opposed to hearing bad news after preparing for good news. So I was not surprised, I had been preparing for that news since the day after I found out I had a tumor. All I did was sit silently and let her carry on with what has to be one of the most difficult conversations to be held with an almost complete stranger. I could barely break the news to my family, not sure how she does it to complete strangers day in and day out.
From that day forward I looked at my new life with a different vision. I felt like I had a bad hand dealt to me and was determined to do any and everything I could to rectify the situation. I never panicked, I never let myself get too down, I surrounded myself with love, friends and happiness and I got on with it. I did what any other human in my shoes would do and I fought like hell to survive.
When I first found out I had a tumor I was dead set on not going through what I watched my mother go through in her battle with breast cancer that ended up taking her life. The chemo was worse than the caner and I did not want to suffer the way that she did. When I saw those two little words on that piece of paper in the my doctor’s office, my mind immediately changed. I knew the chemo and radiation were not a cure or even close to one. All it would do is buy me some extra time, but I wanted to attack the cancer with everything I possibly could- so I got on with it.
I moved into a depressing one bedroom apartment in Hollywood in the middle of the Winter so I could be close to the radiation treatment center, I changed my diet and lifestyle, I cut out as much negativity from my life as I could, I simplified and I fought. Initially it was both chemo and radiation, chemo every single day for 45 days straight and 4 times a month I got to double up with two different chemos along with radiation Monday-Friday. After a couple months the radiation ended and my chemo turned into a cycle of 5 days on and 23 days off along with 4 days of Velcade chemotherapy the first two weeks of each cycle. Rough? yes. The worst was always the day after I did both chemos. It was like clockwork, waking up throughout the entire night covered in sweat, joint pains, nausea all the time, no appetite and all the other fun stuff that goes along with that toxic drug they call a therapy.
But every month after I finished my last injection I forced myself to do something. I traveled and visited my family as much as I could. I went to a young adult cancer summit in Las Vegas a mere 4 months after my surgery and a few weeks after I ended my radiation. I re-introduced myself to my passion of photography. I surfed as much as my blood counts would allow. I learned to do yoga. I met more amazing people. I started a foundation to support other people in the same shoes as me. I spent a day with my hero and now angel. I remained positive no matter what and I got on with it.
My new life is exactly that, new. I am still learning to deal with the daily headaches which I hope one day decide to seize. I still have lingering symptoms from the extensive chemo and radiation which include 24 hours of ‘floaters’ in my vision (which sucks because after my surgery I remember opening my eyes and feeling like I could see again for the first time in a long time. The tumor was pressing on an area of my brain that was causing my vision to slowly deteriorate and I never noticed it because it happened so gradually. When I opened my eyes and the pressure was gone I felt like I was seeing colors for the first time- it is hard to explain, but it was brilliant,) constant joint pain in my knees and elbows, I have all but lost most of my patience which was always one of my better gifts.
But my new life also brings me joy. I embrace my cancer and I love it for what it did for me, but I despise it for trying to kill me. I live in the now and everyday I am grateful to open my eyes. I walk out of my front door and the first thing I do is take the biggest, deepest breathe of fresh air, smile and say thanks. It put me in a place in my life where I feel like I am making a little difference in this big world. I have direction and hope to continue on this path for the next 65 years! The trouble is, there are not too many people who make it 2 years let alone 60+.
I am doing EXCEPTIONALLY well for what I have. I am already in a fairly small population that made it one year without a recurrence, but I am FAAAAR from out of the woods. I hear about people going 18, 22, 28- 36 months before their first recurrence, not a lot of them, but they are out there. I only know of maybe half a dozen or so people that have made it over 5 years and only one person who has gone over 5 years with no recurrences at all- she is and always will be my inspiration.
Everyone always asks me, “So are you now in remission.” Technically there is no cancer growth visible. I will be doing MRI’s every 2 months for the next who knows how many years to make sure it continues this way and hopefully they remain the same- “No new growth,” my new favorite 3 words. There are still cancer cells growing in my head and there always will be, they are just growing so slow right now that my immune system is able to gobble them up before they start growing into a tumor just like you. We all have cancer cells in our bodies growing all the time. So is that called remission? I read that if I can make it 10 years without a recurrence THAN I am ‘population based cured.’ That is when I will consider myself in remission. Nine years from today I will be in remission and not a day sooner. I have seen first hand on so many different occasions how fast this can go south. I am healthy as a horse today, but there is no telling where I will be 6 months from now.
It has been a long and trying year. There have been amazing highs and terrible lows. I made more friends and experienced more this year than the previous dozen. My life is obviously never going to be the same and I wouldn’t have it any other way. I often think of that question that everyone is inevitably asked at least once in their life, “If you could know the exact day of your death, would you want to know?” I never in my life answered yes to that question, ask me again today and I might have a different answer.
There is absolutely no way I would have made it this far without help from all of you. I have a lot of people to thank and beating this crap is the only way I will have enough time to thank everyone the way that I want to. Therefore, you all are my motivation. So thank you for helping me live and I hope you continue to help because I definitely need it.
I would like to invite everyone to check out my personal site ryansepicbattle.com which will be an outreach and advocacy site for others fighting GBM’s. It was also be the source of my blog going forward and my blogspot account will be taken down, so bookmark the new one if you are keeping up with me. Also would be so grateful if you shared this, it was a lot of work and I think it can help some people! With the financial help from my family and amazing girlfriend the site was made by Neil Ballard at ENBY DESIGNS. I designed a shirt to try and raise some more money for my now 9 year battle against my GBM. It is simple and an original saying that I live my life by now. For those of you who donated already, your shirts will be in the mail by next week. Everyone else feel free to pick one up and help me continue in my battle. Anyone wanting to help out and donate can do so through this site as well.
I love you all!
“Fear is fake live now.”