login or register
No products in the cart.
Close

The ‘Other’ Side Effects

July 22, 2014 Uncategorized

Yesterday was July 21st, exactly 19 months and 4 days ago yesterday, I had a massive brain tumor removed from my noggin. 18.5 months ago I was told this tumor is one of the fastest growing and statistically the most lethal form of brain cancer. 18.5 months ago I read statistic after statistic saying that there is over a 90% chance that I will not make it another 18 months; I wasn’t too sure I would see 29. A GBM is the prototypical cancer you think of when hearing about someone being perfectly fine one day and dead less than a year later.

Living with this cancer is not easy, it is always lingering in the back, or rather the front of my mind and it entirely shapes the way I live my life. From the second I wake up till the second I go to sleep I am always trying to figure out what I should and should not do. What has the potential to slow or stop the tumor in it’s tracks and what has the potential to make the little monster make an encore appearance? Why does my head hurt? Why do I have endless ‘floaters’ in my eyes now? Why do I get dizzy sometimes? Is insomnia normal? Is my vision really getting worse or am I paranoid? Why am I tired still? These mental issues are what I call the ‘other’ side effects. These side effects have no treatment options other than mental strength and blind faith.

The mental side of cancer is probably more brutal than the barbaric treatments I initially went though. In treatment I knew what the side effects were and I had a system in place to combat each and every one. Can’t eat or sleep? Smoke a little marijuana=eat a feast and sleep like a baby. Tired and no energy from radiation= yoga and exercise- problem solved. Headaches=motrin. Nausea=marijuana. There were answers for every symptom and nothing was untreatable, except that stupid metal taste! During treatment I knew I was doing all that I could to combat this nonsense now I sometimes feel as if I am grasping at air and hoping what I am doing will make an impact. This past MRI the mental side effects got a quite a bit more difficult.

I do not like talking about my MRI’s, and I rarely post before I have them because I like to pretend that I am always 100% confident that I know everything is going to come back stable (the only word I ever want to hear from my oncologist since he refuses to ever consider me in remission.) I know my timeline, I know that statistically I am now outside the norm- a statistical outlier. I am in a very small category now and that scares me. When I was first diagnosed I was so mentally tough that my heart rate barely inched past 65 when I would meet with my oncologist to go over my MRI results. In the beginning I was doing everything right; eating right, exercising, never drinking, and always positive no matter what news was sent my way. Having to stop treatment early didn’t even phase me. The further out I got from my surgery, the more lazy I became. I got lazy on my diet, I wouldn’t exercise or workout for sometimes a week or more at a time, my supplements and IV drips came and went in waves whenever I could afford them, and I went from drinking maybe once a month to sometimes once a week. I started getting more and more confident and I also started to forget exactly what it is I am up against. I stopped reading about other GBM fighters that I do not directly speak to because I did not want to categorize myself with them, when in fact we are all in the same boat. GBM’s are hard, really fucking hard. I was simply lying to myself to make my life easier.

This MRI I was reminded that I need to get back on the proper road. I talk to a few other GBM pioneers that are paving the road to a cure and I love all of them. Some of them are doing better than others, but we are all in this together. Reading updates from my fellow ‘blastormers’ put things back into perspective. Seeing these amazing fighters have recurrences was the push I needed. I forgot what I was up against and in my realisation came a sense of panic. What the hell was I doing the past 5 months? Certainly not what I should have been doing.

When I posted on FB and IG asking for prayers and positive vibes, it was honestly out of fear. This was the first MRI in a very long time that I had a decent amount of anxiety. I was getting headaches again and a couple other things that were reminiscent of my pre-surgery days. As it turns out, I am still stable!! All that stress was needed and much appreciated. It was the slap I needed to get me back on track. I am not a normal 29 year old, I am not healthy and I can not pretend like I am. I might look healthy from the outside, but I know what is lingering on the inside and to pretend like it is not there is just idiotic. Seeing all of the people who took the time to like, comment, text, call, message, e-mail, pigeon message, and smoke signal me over positive thoughts and prayers reminded me how many people I am living for now. I can not let myself get lazy, I feel as though I would be letting down so many people if I fail in defeating this nonsense. This is the motivation and the reminder I needed.

Seeing all the love and power behind all the amazing people who support and follow me makes the mental side effects much easier to deal with. I know that no matter what happens I will have a small army by my side ready to help if that time ever comes. Lets all hope we never have to cross that bridge.

As many of you know I try to travel somewhere after each stable MRI, this MRI was extra special because I have had a trip to Fiji planned to watch a friend get married for nearly a year now. I was kinda scared that I might not make it, but now I that I have renewed my lease for the next two months I get to go enjoy Fiji worry and stress free! This has been on my bucket list since the first time I saw pictures of the Fijian beaches. Excited is an understatement, but the first word that comes to mind.

xo
FTGF,
Ryan

Today my picture and quote are one in the same, click the image to read it all or take a drive to The CAMP in Costa Mesa.  Actually go there anyways, you will enjoy it.

IMG_4770

Stairs of enlightenment.

 

IMG_4782

And I have to share my favorite photo I took (with my iPhone since I was dumb and didn’t bring my camera). This was my first time to this lookout and by far the best I’ve seen. If you look close enough you can almost see Canada. ;)

 




10 thoughts on “The ‘Other’ Side Effects

  • Marla Ann DeYulis

    Ryan – FTGF. These ugly monsters sometimes slip ahead of the scans to wreak havoc. Clean eating to help your immune system is your biggest line of defense! I am a living survivor/descendant of GBM IV of the brain stem and live my life accordingly. Sugar is poison; refined carbs/processed food is right behind. You are an inspiration to many. Please care for yourself.


  • Jennifer Boles

    Hi Ryan, I’ve been following your battle from the beginning but have never commented. I’ve been consumed with pain from arthritis. Just wallowing in it! Why me blah blah blah! I just recently changed meds. Wow what a difference! Please know I’m not comparing you and me. That would be ridiculous. I just wanted you to know of my struggle. I’m overweight. I haven’t been able to work out because of the pain. But alas, I’m on my 3rd day at the gym! Yippee! I’ve not had my head straight about losing weight and getting healthy. But I read your blog today. I think your an amazing young man. Your words today have really hit me. Not sure why it didn’t happen before. I guess I wasn’t ready. You inspire me. I’m a very strong person mentally but have let the pain overrule it. Today is a new day! I have great family and friends around me to help motivate me. I’ve kinda been ignoring all the support. But that’s yesterdays news. I’m writing this in 24 hour fitness after my workout. I feel good. As I said your words have inspired me! You have a great day and a really fun trip. I’m starting my yoga adventure today to help my mind as well as my body. If you would ever like to join us for yoga its The Yoga Mat in Anaheim. Actually my daughter is teaching her first call there this afternoon. I’m going to help support my daughter as she has help me. Joining us is many of her good friends including Alex Paladino. One of thee nicest humans I know and your buddy as well. Anyway, sorry if this is running on. FTGF :)


  • Gem

    Hello Ryan, Gem here from the UK- I was just thinking about your blog today and wanting to catch up with it. I know we are on different paths with our BT journeys but I just wanted to say you literally summed up there a lot of the feelings I have been having lately, in a nutshell. I have been in denial I think and not wanting to face things, slipping up on the diet side here and there and just not being as good to myself as I know I should be. Mental health is still a strong side effect for me, in fact the first thing to manifest as a symptom before diagnosis so I know it’s here for the long term in some ways. Anyways going massively off point here but I wanted to say I am so pleased you had another stable scan- fantastic news, uplifting to me and another reminder of why I’ve got to get back into the ‘regime’ of all things good and pure and keep fighting! Fiji sounds absolutely awesome too- wishing you and your friends the best of times :)


  • Liz

    AHHHH, Ryan! Great blog post.

    I just read your “My Battle” page and I wanted to leave a comment there, but I couldn’t, so I am leaving it here.

    I so identify with your story (except my tumor isn’t nearly as malignant at this time). From the ignored warning signs, to the new job, no insurance/insurance, can’t believe it is happening, etc.

    Congrats on your milestone!


  • Toluca

    I’ve been following you for years, ever since a mutual friend of ours (Dori) posted about you on her Facebook page. We’ve never met but I feel like we have been friends all this time. You give me so much hope!


  • rosupik06

    Beautiful message Jillian. Cannot exresps how grateful and happy I am that you have not had to go to that hospital physicallyagain. You have such a handsome (beautiful) precious little boy and it is wonderful that you are finally able to relax and enjoy him. I so enjoy your posts about his cute little sayings and activities. You are a wonderful mommy! God bless you and Lynden and little bird oxoxoxox


  • rosupik06

    Ollie Bird, not only are you enough you are evrnethiyg! And your beautiful mommy is and always will be our enough .We will remember those hospital days with deep gratitude for the medical professionals who carried you through. Now, sweet boy, we can’t get enough of your delightful conversation, your bright eyes, and your unflappable spirit!Grammie and Papa


  • sapor2

    Aloha Jillian,It is with a tear in my eye that I read your post. As I remember your diflciuft journey with little bird the diflciuft journey of my granddaughter comes to heart. I’m so very grateful they both are doing so well!David


  • sapor2

    This is what it is:Glioblastoma multiforme (GBM) is the most coommn and most aggressive malignant primary brain tumor in humans, involving glial cells and accounting for 52% of all functional tissue brain tumor cases and 20% of all intracranial tumors. Despite being the most prevalent form of primary brain tumor, GBMs occur in only 2–3 cases per 100,000 people in Europe and North America. According to the WHO classification of the tumors of the central nervous system‎, the standard name for this brain tumor is “glioblastoma”; it presents two variants: giant cell glioblastoma and gliosarcoma. Glioblastomas are also an important brain tumor in canines, and research continues to use this as a model for developing treatments in humans.Here are the known/suspected causes:For unknown reasons, GBM occurs more coommnly in males. Most glioblastoma tumors appear to be sporadic, without any genetic predisposition. No links have been found between glioblastoma and smoking, consumption of cured meat, or electromagnetic fields. Alcohol consumption may be a possible risk factor. Recently, evidence for a viral cause has been discovered, possibly SV40 or cytomegalovirus. There also appears to be a small link between ionizing radiation and glioblastoma. Some also believe that there may be a link between polyvinyl chloride (which is coommnly used in construction) and glioblastoma. A 2006 analysis links brain cancer to lead exposure in the work-place. There is an association of brain tumor incidence and malaria, suggesting that the anopheles mosquito, the carrier of malaria, might transmit a virus or other agent that could cause glioblastoma.Other risk factors include: Sex: male (slightly more coommn in men than women) Age: over 50 years old Ethnicity: Caucasians, Asians Having a low-grade astrocytoma (brain tumor), which often, given enough time, develops into a higher-grade tumor Having one of the following genetic disorders is associated with an increased incidence of gliomas: Neurofibromatosis Tuberous sclerosis Von Hippel-Lindau disease Li-Fraumeni syndrome Turcot syndromeReferences : Hope this helps. Sorry for your loss, Laura.


  • Current day month ye@r *