The past week has been an interesting turn in our journey. I am learning more and more about oncology, health and the brain everyday. I can honestly say by the end of this I will basically be a borderline doctor and probably more knowledgeable then some of the ones I have seen lately. Learning more and more everyday, it is becoming more and more clear to me that doctors can in some ways be blinded by their education. It is sad, but I think they eventually become too scientific and forget that the human body is an amazing and complex machine that actually has the power to do more than we give it credit for. NONE of my doctors have ever once said anything to me about diet, exposure to toxins, style of life, travel experiences, or the combination of them all. When I inquire about what I can do on my end to help, all they have for me is to maintain a positive outlook and stay happy, get some exercise and eat your vegetables. How can a DOCTOR not know basic human anatomy and the effects of what we put in our bodies? It truly boggles my mind and I almost find it sad that modern science is turning the human body into a science project as opposed to learning about how it managed to maintain itself for the past million or so years.
Last Monday I went to UCLA Medical School and met with some clinical drug trial doctors whom are currently working on a drug which shows some promise of treating GBM's. The drug is called Velcade and would be taken in conjunction with my chemo and radiation on the 1st, 4th, 8th, and 11th day repeating with a two week break after the 11th day. This would continue on for "as long as thought needed." I am still not sure how I feel about this drug and seeing as how there is no guarente and would involve a lot of extra driving on top of what will already be a strenuous and tough time in my life. The doctors I met with were very kind and the nurse practitioner even gave me a handicap placard for those days when my treatments get me a wee bit fatigued.
Prior to my UCLA meeting I met with the radiology doctor who will be in charge of carrying out my daily dose of what I like to call brain poison. She went through, in quite vigorous detail exactly what I should and will expect going forward with my treatments. Radiation is not healthy nor natural. Radiation pumped into your brain is not healthy. Your brain is your entire being, it is your personality, your memories, your movements and everything in between. Your brain is your sense of being and without it, we would be nothing more then robots. Exposing my sense of being to extreme amounts of poison does not sound pleasing and I am not looking forward to it in the least. This is basically the 'standard' for GBM's and without it, it is said I would probably not make it to my 29th bday. Now I am sure you can see why I am taking this route.
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Tomorrow marks a new chapter in my life. I will begin treatments for one of the most aggressive forms of brain cancer a human can have. The first step was taking the monster out and it was a good first step. I did another MRI Monday morning and can honestly say for the first time in this whole experience I was very nervous and a bit scared. I have now done about 6 or so MRI's and this was the first time I really did not know what to expect. The form of cancer I am battling is known to be aggressive... Extremely aggressive. It can grow back to full size and plus some within less than a month. It had been 3 weeks since my surgery and this MRI was going to show just how aggressive my cancer wants to be. I am certainly not a doctor and I do not know exactly how to read MRI's and judge the different scans, but from my experience looking at them - I think the tumor only grew back minimally. The report which I got with it kind of affirmed this while stating, "Minimal regrowth which could possibly be scar tissue or excess swelling from the procedure." Getting some sort of good news through this is always pleasing, albeit good is becoming more and more of an arbitrary term these days.
The next 8 weeks will be spent in and out of hospitals, driving from UCLA to Kaiser and back again. Thus, I will be moving to LA for the duration of my therapies (except most weekends I will be back in town.) Through Kaiser, I have an apartment not too far from the hospital and 2 cozy twin size beds. So if anyone ever wants to come spend the night and play some intense scrabble or watch a movie, I have a bed for ya! I know I will enjoy anyones company and the more the merrier!
Once again, I want to thank everyone for their support. It truly inspires and motivates me to push even harder, and live even stronger then before. You guys are the reason I am in such high spirits even with such a grim horizon in view. I have cancer, it does not have me. I will beat this and one day we will all laugh at the little monster who thought he stood a chance.
Teddy Roosevelt said it best, "Believe you can and you are already half way there."
FTGF,
Ryan
xx
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Tomorrow marks a new chapter in my life. I will begin treatments for one of the most aggressive forms of brain cancer a human can have. The first step was taking the monster out and it was a good first step. I did another MRI Monday morning and can honestly say for the first time in this whole experience I was very nervous and a bit scared. I have now done about 6 or so MRI's and this was the first time I really did not know what to expect. The form of cancer I am battling is known to be aggressive... Extremely aggressive. It can grow back to full size and plus some within less than a month. It had been 3 weeks since my surgery and this MRI was going to show just how aggressive my cancer wants to be. I am certainly not a doctor and I do not know exactly how to read MRI's and judge the different scans, but from my experience looking at them - I think the tumor only grew back minimally. The report which I got with it kind of affirmed this while stating, "Minimal regrowth which could possibly be scar tissue or excess swelling from the procedure." Getting some sort of good news through this is always pleasing, albeit good is becoming more and more of an arbitrary term these days.
The next 8 weeks will be spent in and out of hospitals, driving from UCLA to Kaiser and back again. Thus, I will be moving to LA for the duration of my therapies (except most weekends I will be back in town.) Through Kaiser, I have an apartment not too far from the hospital and 2 cozy twin size beds. So if anyone ever wants to come spend the night and play some intense scrabble or watch a movie, I have a bed for ya! I know I will enjoy anyones company and the more the merrier!
Once again, I want to thank everyone for their support. It truly inspires and motivates me to push even harder, and live even stronger then before. You guys are the reason I am in such high spirits even with such a grim horizon in view. I have cancer, it does not have me. I will beat this and one day we will all laugh at the little monster who thought he stood a chance.
Teddy Roosevelt said it best, "Believe you can and you are already half way there."
FTGF,
Ryan
xx
I love your attitude and your outlook on everything. I see you reading and learning everything you can to fight this battle. Let's face it, we all stand behind you but your the one who has to do the tough part. What you learn is what you share so the next person in your boat will know they have options. When they see a warrior like you they can to choose to fight and not see this as a death sentence.
ReplyDeleteI spent a great deal of time in a hospital and with doctors with Mom Diane and my dad and I look at it this way. Every day all day these people see and treat cancer. EVERY DAY. It was their choice to go into medicine to do their best to treat NOT CURE cancer. I know one particular nurse who worked on the Oncology ward and then was diagnosed. She wants people to live. It just that sometime its like a deer in headlights. Their attempts seem pointless and their efforts unappreciated. To be emotionally connected is to hard. Because when your patients loose their battle they MUST feel like they have lost as well. I ADMIT MANY of them need someone to snap their fingers in their faces and say HEY I AM A PERSON FIGHTING FOR MY LIFE!!! So SNAP SNAP SNAP away when they make you feel anything less than that. Tell them you are a fighter. Tell them YOU have CANCER and Cancer does not have you. You have the Power RYAN to make changes. Just by sharing and letting people share with you.
I love you as a mom and I BELIEVE YOU CAN!!!
Hi Ryan... I don't believe I have ever actually met you, but we may have crossed paths at some point in life. I went to Rosary C/O 2003 so we at least know a lot of the same people. Since I saw your blog, I have been following and wanted to tell you about my story. When I was 12 years old, I was diagnosed with brain cancer. I had a pilocytic astrocytoma. I know you've done your research, and understand this as non-metastic childhood tumor- but lets be real... cancer is cancer.. Although the usual prognosis of this grade of tumor is good, mine was not the case. My tumor was the size of a baseball- the biggest tumor was surgeon has ever removed from the brain till this day. It was a slow growing tumor, the doc said due to its size and depressions on my skull I was probably born with it. It was crushing my brain stem. A brain stem is supposed to be the size of the pinky, mine was the size of a pencil lead. How I was alive was a miracle in itself. I should've been dead according to all the doctors. I had a tumor termed "the silent killer", but I managed to live with this "monster" in my head for 12 years of my life. My prognosis was 25% chance of death upon removal of the tumor, and IF I lived... I would have extensive disabilities including hearing issues, blindness, inability to walk, inability to talk.. the list goes on. I am telling you this story to prove that the power of your own mind is what will get you through this. Don't get my wrong, I do suffer from several of these disabilities I described, but not to the extent I should have. I am a nursing student.. working on my second bachelors degree. I will be graduating in December; and I plan to work with children and give back to my community. Nobody ever pushed me to get through these obstacles... everyone kind of gives me a "free pass" at life, including my parents.. which is frustrating and humiliating. Don't let anyone tell you that you can't do it. Keep pushing on. You are a strong man and I admire your courage. Please feel free to ask me any questions you may have. Not only have I been in your position- literally- but I am 'practically' a nurse. :) Good luck. You are in my thoughts and prayers.
ReplyDeleteKristina
Ryan, I just want you to know my dad has the same exact form of cancer (glioblastoma stage 4) and after two surgeries and 8 months of chemo, he is tumor free! Keep your head up, you can do this! Ill be praying!
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