November 19, 2013 |
I always had this idea in my head of fighting like hell, winning my fight with cancer, moving on with my life and living happily ever after. I guess I wasn’t being too realistic with myself since my mentality from day one has been “Prepare for the worst, hope for the best.” Even before I abruptly ended all my treatments I realized that I needed to start working again. My treatment dosages were being gradually reduced and other than the first morning after my chemo I was basically fully functional again. I built up some debt that wasn’t doing anything but getting higher and staying at home all alone everyday was getting really old. After I stopped all Western treatments there was no doubt in my mind any longer, if I didn’t find ways to stay busy I think I might lose my mind.
I remained an employee of my previous employer and planned on returning back there upon completion of my treatment, but situations changed and I was no longer able to return. This was not the news I wanted to hear, but I have had to deal with much harder hurdles in my life and finding another job shouldn’t be too difficult, or so I thought.
My job and financial situation is a very minor problem in life, I still am cancer free and my most recent MRI done last Thursday was all clear! Great news! December 17th will be one year cancer free! The thing I forgot to factor in was all the stress that comes with being “in remission.” I used quotes for that word since I still am far from being considered in a remissive state (9 years to exact). So if you see me, lets just not talk about it cause I really don’t want to jinx it
My new life now consists of worry and stress nearly everyday. Everything is now a symptom in my head and every headache I have I am immediately convinced that the cancer is back. Anytime I lose track of my thoughts or forget something, it’s for sure the cancer. Every weird sensation I feel is immediately something terrible. I feel almost like I am now living my life 2 months at a time waiting for that “all clear” from my doctor so I can breathe again. The worst is the week or two leading up to my MRI when it basically consumes me. I know this will get easier and this past MRI was by far the worst since it was the first MRI post treatment. Don’t let me sound like a Debbie Downer, I am so grateful to still be cancer free facing the worst form of brain cancer there is. I am already in a very small population of humans to go a year without this crap returning. I am thankful for everyday and every hour I have, but the mental games are wearing.
When I was in treatment I had my routine and I knew what, where and how I was fighting my battle. I was never nervous or stressed, I was determined and driven with focus and determination. I had a vision and I was determined to do everything in my power to survive and now I am back kind of just floating. Now I kind of seem out of rhythm. Trying to find a job and getting rejected for positions that frankly I know I am over qualified for is really frustrating, but at this point in my life my job title is the least of my worries. I guess the rejection is the hardest part knowing my capabilities. This is just another stress on top of everything else along with the the rejection which is more of a mental bruise.
I still wonder what is harder, life during treatment of life after.
As of now, my answer is the latter.
I am pretty sure this was one of my bad posts, but I said in the beginning over a year ago I am sharing everything, the good, the bad and the ugly. I know tomorrow I will wake up and I will continue my battle, I just needed to vent a little and I guess this is now my public journal so I apologize if I got a little emo.
On a positive note, I want to thank everyone so much who has donated to my continuing medical expenses fund. I am utterly blown away by seeing how many people support, love and care for me, especially those I have never met. You guys inspire me to continue with this crap hand I was dealt and without your continued support I would literally be drowning in debt. I hate that I have to ask, but I hope I can give you all a little bit of courage to face life a little easier, if not a t-shirt will have to suffice! The shirts are all but done and being printed up within the next week or so and I have something in the works for anyone who is facing a GBM themselves, as I know I have a few GBM fighters following me as well! If you have a GBM, please email me or leave a comment with your e-mail. Stay strong and never stop!
For anyone who wants to donate: Ryan’s medical expenses.
“One day at a time.”
This Chi Chi Rodriguez fail at a trick golf shot should make you laugh, I sure did.
October 22, 2013 |
The longest and most stressful slash amazing year of my life has finally ended. 365 days ago at about 9am I found out I had a tumor in my brain. That tumor turned out to be cancer. That cancer turned out to be one of the worst cancers around. A year ago marked the beginning of a new lifelong battle that has only just begun. 365 days ago I began a road that will shape how the rest of my life will be navigated. When I speak to my close friends about the upcoming ‘anniversary’ they always comment on how fast the year went by. For me, this past year seemed like it lasted 5. I guess being on this side of the fence is a bit different, I am just glad it is finally over! My progress with this cancer has put me into a very small population of people. GBM’s are notorious for regrowing quite rapidly and not a very large percentage of GBM patients go as long as I have without showing any signs of regrowth- lets pray this continues for another 50 years!
It has been quite a while since I last updated everyone and A LOT has changed. It has been stressful and wearing to the point of exhaustion, but I am finally now comfortable enough to share what has transpired over the past 6-7, 8 weeks? Last blog I posted about all the issues with my treatments, the chemo’s were causing all sorts of problems with my blood counts and making it hard to function at times. I was supposed to be done with my 8th round of chemo and starting my 9th as of Tuesday 2 weeks ago, but my counts have now decided they want to stay just below the minimum required for treatment. Being on a trial drug they are mandated and regulated to the max which means deviation from protocol means immediate disallowance from the trial. I was given not one, but two exceptions due to my prognosis, age and overall health (they really wanted to keep me on the trial since I am doing so well against such a terrible cancer.) Two is the maximum number of allowances allowed for this trial so on my third try my tests still came back low which means I no longer had the choice of whether or not I want to continue on the trial, the choice was made for me.
This is change and any change now is quite unsettling when dealing with on of the most aggressive cancers and the most lethal brain cancer around, but at the same time I think that trial was causing more damage than good so I was already about 80% sure I wanted to end it anyways; The decision was made for me and that made it much easier to end it. Driving back and forth from UCLA was getting very old especially not knowing if the drug is even helping in anyway. All I knew for sure was that it was causing me a lot of issues I would not have had to deal with without the drug. I am forever grateful for everyone at UCLA who helped me along this road and whether or not it helped or hurt me, I am still thankful.
Fast forward and I have an appointment with my oncologist to decide my treatment going forward. A week and half later I test my blood counts again and you guessed it, still too low for treatment. Some counts went up, others went down; overall still too low for chemo. After a brief, but informative talk with my oncologist, we decided to stop all treatment. I am testing again in a couple days and the final verdict will be decided when I see how those results look, but I am 99% sure I am done with the toxic chemo (pending a recurrence) which I pray never comes.
The doctors are all very clever when talking to me. The words ‘remission’ or ‘cured’ are never used and when I inquired about remission I was told “We rarely categorize GBM patients as ‘in remission.’” There are always going to be stem cells in my brain with GBM cancer cells growing, mine are growing very slow at the moment and my immune system is able to clean them out without any trouble, but if they do one day decide to speed things back up, that is where in the trouble lies. Am I cured? Who knows, and frankly until my 50th birthday I will never consider myself in remission, this cancer is just too aggressive to truly let off the gas and the evidence is in the fact that my doctor told me that for the rest of my life I will be doing MRI’s every 2 maybe 3 months if I feel comfortable enough.
I am going to attempt to continue doing all of my alternative therapies and am actually adding a couple things in since I am taking things out. I want to make sure and cover every base possible to try and keep this cancer where it is. It is painstaking, enduring and expensive. Insurance refuses to cover any of my alternative therapies because there is not enough clinical evidence to back up what I do (aka there is no money in it,) but they have no problem dispensing pill after pill and IV after IV that is not even a possibility of a cure, only a prolonging treatment to stretch lives out an extra few months, but makes them a boatload of money (ironic, right?)
I have been putting off writing this post because to be honest I am kind of scared. I got into a routine and felt comfortable with my progress as I went about my life. I had routine and comfort in that routine which helped guide me. Once I ended all my treatment I kind of felt like I lost my safety net. It has taken me some time to readjust to another ‘new normal,’ but I quickly found that I need to stay busy or my mind tends to go into thoughts that are not beneficial to my health. Being scared of living without chemo is a bad mentality and one which has taken me a few weeks to fix. In order to stay busy and try and scrounge up some money I went back to help out a close friend and his family’s company part time. It is a weird thing going back to work after such a long hiatus, but after the first day it was like I was never gone.
I am trying to go back to work full time, but even returning to work at my current salary, I will not be able to cover half of the alternative therapies I do while trying to cover basic living expenses. I am for hire though, you name it and I’ll do it! (I also have a really nice camera and have been told I take decent pictures so maybe if you have something you want documented I can help you out… Don’t think I am wedding type material, but birthdays or parties, or showers alike I think I can handle.)
That being said, what now? Well I need some help again. It is so hard for me to ask for help after all everyone has done for me. Help from perfect strangers and friends alike, you guys have truly been the reason I am here today. Without the help I would have been stuck with just chemo and who knows where I would be. The stuff I do outside of insurance is not cheap at all, but I truly believe in it and think it is the main reason I am doing so well and here today. Whether or not it is I may never know, and I hope I never have to find out! I set up a donation site through what I hear is a free service since the first service my sister used took an exceptional amount of the money donated to me. Anyone who donates $40 or more will get a shirt that I am currently designing myself inspired by this last year of my life (please e-mail ryansepicbattle@gmail(.com) with your shipping address, name and size. I will ship worldwide, just give me some time as these shirts will not even be ordered until I can figure out a rough estimate of how many I will need. These shirts will be limited to whoever donates and will also be the first shirt introduced for Little Kings Foundation. I only need some help to get me going and to pay down a little bit of debt that I have accumulated on my year long battle with this little monster in my head. When I started this I didn’t think there was anyway I would burn through over $25,000- guess I grossly underestimated the cost of cancer.
Whether or not you can help me out this time around, I honestly want to thank all of you from wherever the truest of thanks come from. I hope in my year long journey I have helped a couple people along the way. I will continue blogging about my battle and working with the foundation as I gear up for my new life. Stay tuned because the best is yet to come!
Anyone who wants to donate can visit Ryans Medical Fund
I can’t thank you all enough and PLEASE let me know if I can do anything for any of you, if it is within my power I will make it happen!
“What you do today is important because you are exchanging a day of your life for it.”
September 16, 2013 |
It’s been a few weeks since I last post and a stressful slash amazing few weeks they have been. The last post I did was from Portland. I was visiting my family up there enjoying one final trip to the Pacific Northwest before Summer officially ends. It was an amazing trip filled with adventure, memories, amazing scenery and most of all love. Not being able to drive to my sisters homes whenever I want just to chat is often times frustrating since we are all so close as a family. Getting to see them always makes me whatever stresses or worries I have diminish and I am able to forget about the ‘C word’ for a little bit. My last trip closed with some really tough news that I was not expecting at all.
When I started this whole journey I was introduced to and met some amazing people, including some new friends from all over the world. Obviously I have yet to meet a lot of them in person, but we often chat via e-mail or text. The young adult cancer community is quite a bit smaller than the rest of the cancer communities and finding people to relate to what you are going through is often hard. I have only met one other AYA cancer fighter who has the exact same thing as me, she is alive and thriving well over 5 years out! But through this journey I have met some amazing AYA’s with numerous types of cancer, one of which was a friend named Tiffany.
I ‘met’ Tiffany when I was diagnosed and we somehow became friends on facebook. She had been fighting a different form of cancer for quite some time when I began my road and she was always an inspiration to me. She was married and lived in Tacoma, Washington and had the most beautiful smile I have ever seen. We often traded cancer secrets and recommended both healthy food options as well as what our newest ‘therapy’ regimen consisted of. She did a lot of the same things I am currently doing and we joked about how much our doctors hate that we pursue ‘alternative’ therapies instead of just sticking with the toxic chemos and radiation that have never shown any proof of healing our cancers, simply prolonging life. She was a fighter and she never let on that anything was wrong. We both knew she was sick, but she never once said how bad she was.
I spoke with Tiffany a month ago, we did our usual check-in and happy and well wishes. She said she was trying a new therapy that was kinda ‘rough,’ but other than that she said she was doing pretty well. Not even 3 weeks later out of nowhere it seemed, she passed. She was an amazing fighter and though I never met her, I felt like a small part of me left with her as well.
The bond that we share as cancer fighters is something I have never experienced before. When you are facing a potential early departure you tend to attach yourself quite easily to other people going through the same thing. We had a connection that was on a different level than any other friendship I have ever had. The loss of my third friend in as many months to cancer was a bit much and I think I let it get to me a little more than I should considering I am now running and organization that will be dealing with people who for the most part might not be living long lives. The loss of Tiffany, financial stresses and having to try and figure out why my blood counts will not regulate began causing quite a bit of stress. When I am stressed the first thing that goes is my appetite. Then the headaches started coming back and within a couple weeks I was feeling pressure, and having balance, coordination and mental issues I have not had since the tumor was still in my head. Obviously with all the symptoms the first thing that comes to mind is the tumor is back, which only builds on the anxiety already there.
After stressing about this for a couple weeks I finally decided I couldn’t do it anymore and I was getting so anxious that I felt like I was about to have a mental breakdown, and to be honest I kind of did. I finally called my doctor and asked to do a scan so I could appease my mind and at least have a resolution regardless of what the outcome at least I had an answer. He ordered a stat scan and I went in and had it done. When I looked at the scan on the screen after it was done the lady said, “You can look at it, but I can’t say anything and I don’t know what your baseline looked like anyways.” Don’t worry, I might not have proper schooling in reading them, but I have seen enough to know what a tumor growing looks like so she showed me my scans. The second I saw the scans I felt like a 500lb weight lifted from my shoulders. It was a feeling I have never felt before. It was like the biggest ball of anxiety was at once unravelled and released into the air. Confirming that all my symptoms were not related to my cancer was to say the least, one of the best things I have felt in my life.
I have never really let myself feel sorry for myself and really aside from the day I found out I had a tumor I never really let my emotions show in anyway- not because I think I am tough, I really just don’t feel sorry for myself. But when I walked out of that room I felt like I wanted to laugh and cry at the same time. I was bottling up so many emotions for so long I think my brain just couldn’t handle it anymore and I finally let myself have a moment to feel sorry for myself. It was only a couple minutes, but ever since then I have felt like a new person.
I talked to my doctors more and conferred with my doctors from UCLA as well, we were still trying to figure out what was causing all the issues because the headaches made sense due to stress, but the rest of the symptoms suggested there might be something else going on. So I called another doctor who deals in primary care, just so I can do a checkup and make sure there is nothing else going on and sure enough within two minutes of my exam I come to find out I have a pretty decent sinus infection going on- hence the pressure, mental and balance issues coupled with the headaches and pressure.
This all happened on Friday of last week, which was also my lovers birthday. This was the best news I could have ever received because I could now celebrate Tasha’s birthday with peace of mind instead of stressing and freaking out the entire time!
We had an AMAZING weekend filled with dinners, a pool day saturday with amazing friends and beautiful people and a relaxing sunday where my sinus infection decided to peak (I feel 1,000 times better waking up this morning). It was the best possible way to end the summer and I could not have asked for better people to spend it with. I decided that Saturday, just for one day I was going to pretend like I didn’t have cancer. I wanted a day to relax, clear my head and have foods that I shouldn’t eat, drink beers that I shouldn’t drink and pretend that for one day I am healthy again. It was exactly what I needed and the memory of that day alone was worth whatever ramifications may or may not come from it (if any.) I have been so strict with myself that I sometimes forget to just have fun. Sometimes having a couple beers to relax and de-stress is more healthy than the strict regimen I have set in place.
I have enlisted another ‘doctor’ into my cavalry whom I will meet with today to help deal with the stresses I endure through this. I am hoping he can help me find a better way to deal with all the anxieties that come with this game because whatever I am doing now is certainly not beneficial to myself (or anyone around me at times.)
I decided when this summer started that I would make this summer the best summer of my life. I traveled a bit, I saw my family as often as I could, I made new friends and revisited old friends. I smiled and laughed and enjoyed everyday, as summer ends I can honestly say that this summer WAS the best summer of my life. I hope it was as good for all of you as it was for me.
|Tiffany – We will meet for the first time one day down the road, until then…
“Try not to forget why we are all here. We are not here to build fortunes or create empires; We are here for a small time to share a piece of ourselves with the world and pass our little piece onto everyone we encounter.”
August 30, 2013 |
Staying sane while wondering the ‘cancer road’ is not always an easy task. I don’t know how many of you have taken the time to read into the type of cancer I am currently fighting, but of the cancers that are out there GBM’s are not the best option. Obviously cancer is cancer and there is not a single one out there that is in anyway good, but GBM’s are one of the more aggressive and deadly. I try my hardest to not look at statistics and I go out of my way to not read anything regarding my ailment because 99% of the time it is just bad news, but sometimes it is unavoidable. Today was one of those days.
My last post was regarding one of the strongest persons I have ever met. Lauren ‘Lola’ Scott taught me what strength is in a way nobody else could. She didn’t have the same cancer, but hers was just as bad. She fought from the day she was a teenager until her departure at 16. I started Little Kings to keep my mind occupied and help out other people in my situation without putting much thought into it other than I wanted other people to have the help I was so lucky enough to have from all of you. When I met Lola she blew me away and I immediately met one of the best friends I will ever have. It was one day and she changed my life. We texted back and forth after she left and I will never delete our conversation as it is a reminder of someone who I never want to forget even if this cancer eats out all of my memories down the road. When Lola passed away I began to realize what I have signed up for. I am basically going to be spending the rest of my life helping people who are fighting for their lives and many of them will not make it. I lost a best friend in a matter of months and I do not see this trend ending. It is hard to not become attached to such strong, inspiring, motivating and beautiful people such as Lola. She was genuine and loving as can be knowing that she didn’t have all that much time left. Going forward in this journey will prove to be more trying than I could have ever foresaw, but it is the road I want to take.
My family had planned a huge trip in Oregon to go stay in a cabin near Crater Lake. This was a trip I did not think I would be able to afford or even have the ability to attend, but after Lola passed I had to get away. Through my awesome friends (Thanks Kellie!) I was able to get a roundtrip ticket to Portland for $80 and my family assured me my expenses would be nothing more, so I booked what is without a doubt the most last minute trip I have ever done in my life and came to Portland to spend some time with my family. Being at the cabin and forgetting about both myself and Lola for a while was everything I needed. I was able to clear my head in the clean, fresh mountain air. We stayed so busy the entire time that I didn’t have time to think about all the bad even if I wanted to. We had adventure after adventure, thunderstorms and the most insane rain I have ever seen. Oregonian hillbillies that are the epitome of white trash jerks whom I wish would catch cancer (sorry, this guy was the most evil person I have ever met in my life.) We went to some of the most beautiful places I have ever seen and if you have never been to Crater Lake, do yourself a favor and go at least once. It should be one of the wonders of the world. I have seen some awesome things in my life, and this is one of the most epic places without a doubt. Spending time with my family away from my daily struggles was exactly what I needed.
I decided to stay up here for the following week since I did not have any chemo and spending time with my nieces and nephew has been amazing. I don’t get to watch them grow up so visiting them is always a treat. We had great times here and I wish I did not have to leave only to go back for chemo starting again on Tuesday, but such is life.
I have been feeling so happy and just enjoying life and today I got news that someone who has the exact same cancer as I do has had another recurrence, her now 5′th recurrence. She has had 5 surgeries already and is now preparing for her 6′th. She has been fighting her GBM for over 10 years and she is one of the longest living survivors I have heard of. Not many people with GBMs make it past 5 years, 10 years is almost unheard of. I think I have read about one or 2 that have made it 20+ years, but I assure you there are not very many. It is hard to think about a long term future with these statistics, and seeing people in the same shoes as you facing such obstacles only weighs more on me. I am the most optimistic person when it comes to this cancer stuff, but I am also a realist. Cancer like mine does not go away. For the rest of my life I will stress and pray that it stays away, but there will always be an enormous (and almost guaranteed) chance that it will come back. As much as I hate it, that is my reality so trips like this past week are what I look forward to. Time relaxing with the people I love and care about and being able to forget about life even if it is just for a few days.
I am on the tail end of my trip and leave tomorrow at 7am to return home. I know when I get home I am going to be facing a ton of things on my plate of which cancer is just the icing on top, but today for the last 24 hours I plan on enjoying the hell out of my family and my sisters loving dog of 14 or 15 years old whom I probably will never see again since she is not doing so well. When I get home I will worry about my cancer, my never ending chemo schedule, trips to UCLA, doctors appointments, MRI’s, and my diminishing account balances (who would have thought you could burn through $30,000 in a matter of 7 months all thanks to cancer?) Today I am going to try and laugh some more, I want to hug my nieces and nephew and say goodbye to Penny. Today is sunny and beautiful and I plan on enjoying today. I will stress later and put off my mental breakdown as long as I can. Or maybe I should just get it out of the way? I don’t know anymore.
I have about 1,000 pictures I have taken in the last 9 days and I will post them once I get them on my computer and edit them a bit. For now here is one of my favorites.
August 8, 2013 |
People always immediately look for answers or justification when a tragedy happens. We need closure or an answer. We need to find meaning in things that seem so terrible or else it makes it that much harder to cope. Lola’s death is a tragedy. It is terrible that such an amazing young women was taken so early. But that is what death is, it is tragic by definition. It is the ultimate end and the final period. After my diagnosis I have looked at life very differently. I now notice things and understand things that I may not have understood before. Maybe it is just me looking for answers like everyone else, but the conclusion that I have come to is that everyone has a role to play in this little land we call Earth. I could be wrong and probably am, but I believe we are all meat to do something here, there are the bad entities that try to stray us from our path and they are the ones who were lost on their path by someone or something else. Lola’s path was perfect. She did exactly what she needed to do. Her life was cut short, but she has touched thousands of people in one way or another. And those thousands of people will in turn act out in honor of Lola, and who knows who they will inspire going forward- her life is endless in many ways because her life has no doubt started a ripple effect in a positive direction.
I spent one day, not even 6 hours with her and in that time, she left a mark on me that will shape the way I live the rest of my life. In our brief encounter I could feel her energy like a the feeling you get standing too close to a powerful magnet. Her soul resonated with beauty and no matter how much she threw up she managed to smile after. I watched a 16 year old women suffering from a terrible form of cancer that not only caused pain, but wrecked havoc on her breathing and all the fun nausea, vomiting, fatigue and anxiety that we get to endure as a cancer family. Pain is bad enough, she got the trifecta. Sometimes it takes a tragedy to make the world a better place and losing Lola has no doubt inspired me once again. I want to thank you Lola, you truly changed my outlook on what was already a skewed perspective. I am bummed we are going to miss our date in New York watching the ball drop for our first time together, but when I finally go you will be with me. I mourn you today and I am sure for a long time to come, but I know what I have to do and I know you are a part of the reason I have to do it.
In my mind, I know what my end game can be. I know what I am up against and it scares me sometimes. I put on a good face, but there are times where I do get scared and anxious that I might not make it to 30. Treatment is hard and fighting this cancer wears on me. I’ll have been on chemo of one sort or another for over 180 days, 30 days of high dose radiation under my belt, countless IV’s, blood draws, labs, MRI’s, scans, appointments and who knows what else when I finish all of this and then I get to go into ‘remission’ if I am lucky. And even in ‘remission’ I will still be doing MRI’s every 2 or 3 months for the rest of my life. It is a lot of pain, it is hard and it sucks, but watching Lola fight for so long put even more perspective into my life. After watching Lola go through what she went through, I no longer have any of the fears that I had before. Now, I simply hope that in the time I have, whether it is 2 years or 52 years that I can help to inspire some people the way that Lola inspired me.
“I love you to the moon and back.”
Lauren ‘Lola’ Scott
Little Kings- Helping Young Adults with cancer.
July 20, 2013 |
I have been waiting for this moment for the last 2 months. I am now halfway through treatment. I have finished 6 rounds of chemotherapy. The last 6 months have been the most amazing, dramatic, joyful, sad, happy, peaceful and maturing months of my entire life. I have experienced and been through more in these past 6 months than some people do in their entire lifetime. It has been a lot of bad with a million times as much good. Incredible highs with collapsing and devastating lows. The longest 6 months of my life. 6 months that have reshaped me for the rest of my life. 6 months that I will never forget. 6 months of pain, and 6 months of joy. 6 months down and 6 months to go.
Yesterday was quite bittersweet. I had chemo in the morning which marked the halfway point of my treatment and buried an amazing women in the afternoon. It was a long day to say the least. The service was beautiful, emotional and the perfect ending to a life lived in happiness and love. She left behind a loving family and a ton of friends. I can only imagine how much fun she is having up in heaven now, kinda jealous. She passed away from cancer. One of my good friends is not feeling too well right now. Because of cancer. We lost an amazing 13 year old idol and hero to millions. Because of cancer. There has been tragedy, but there has also been some amazing things to come from all the devastation. Nobody ever claimed that life was easy, not in the least. But through all the bad there is so much more good. That is why we wake up every morning, shower and go to a job we might not like very much. We stress and worry, we complain and can’t seem to get a lot of stuff right. We see torture and pain all around us, but we carry on. We do hard labor and mundane tasks to live on this earth. Each day you pay a price and that price is a day of your life. But through the punching in and punching out, if you look deep enough past all the crap and all the evil out there, there are millions of moments that make every minute of life worth all the nonsense we have to go through. There is beauty all around us if we just open our eyes and block out all the crap so see it sometimes.
I started this blog as a way to communicate my progress through a tumor, which then led to my blog through my journey fighting cancer. I have started to grow a small, but loyal audience and I thank you for following and supporting. I think a big reason that you all keep up with me is because I am able to take this ‘terminal cancer’ and turn it into such a positive thing. It truly changed my life for the better and I am able to joke around about it. I never take my treatment too seriously and I can laugh about the pain instead of complain about it. I don’t think too many people take this approach and maybe that is the appeal, whatever it is I feel like I am getting too emotional and dramatic now. I have been going through some tough stuff personally and the treatment has been a rollercoaster and it seems to be coming off in my writing now as well- I think, (don’t know for sure because I don’t really re-read my blogs, kinda just wing ‘em for the most part.) Spell check makes sure I don’t sound illiterate and other than that I’m quite un filtered.
Going forward I want to go back to how I started this blog. I want to make anyone who reads this laugh. I want you guys to all be with me through this till the end. I can check analytics on my blog and everyday on average over 150 people check my blog. When I post that number is exceptionally higher. It has been viewed almost 100,000 times in 6 months and I can not thank everyone enough for simply reading these and checking up to make sure I am still doing well. You guys are what keep me writing and I hope I am somehow helping you guys as well.
I have been waiting for this 6 month mark for a while now. After today I will be on the downslope of treatment and in turn, a new ‘normal’ life. The next 6 months will also be exceptionally awesome as LKF is already starting to catch some steam. We are genuinely excited to continue this endeavor for a long time to come, but we will certainly need everyones help! I love you all and if there is anything I can do for anyone who reads this please ask, and that is not an empty gesture. If I can help, I will figure out a way to help.
This quote is dedicated to my father and for anyone who knows him will totally understand.
“People who think they know everything are a great annoyance to those of us who do.”
|The day it all started, 20 minutes before my craniotomy.
July 17, 2013 |
When you are diagnosed your life changes and pretty quickly. It’s like an onslaught of anxiety, information, depression, acceptance, anger and every other emotion all mixed into a bag and left out to ferment. The beginning is absolutely terrible, and then you start to find a routine. You get a support system, you start your treatment and you start to feel comfortable in your new life. You get used to getting poked by needles about 3 or 4 times a week. You learn terms that most people couldn’t pronounce without assistance, you learn all about blood tests, MRI scans, medical jargon and actually know what they mean. Taking 75 or so pills A DAY doesn’t seem all that bad after doing it for months on end. You start to accept that for the most part, your life will never be the same.
For me, I found direction and purpose, others aren’t always so lucky and often others let their prognosis and diagnosis overwhelm them and give up. What I am also finding, is that I have met some of the most amazing people through this journey. People who are in the same fight as me and some of which are not doing so well. I started the Little Kings Foundation wanting to help people that were in my shoes not thinking about the fact that the people I am going to be helping will for the most part be in the hardest time of their lives. I have made friends with people that to be honest, will not make it another year. I have seen children going through the worst treatments imaginable, chemos that make mine look like a frosty beverage on a hot summers day. I have grown to love my fellow warriors, and signing up for this life, I am going to watch a lot of them die. I still don’t know how I feel about this and I have heard of ‘survivors guilt,’ (not that I am a survivor yet, still wayyyyyy too early to be certain about anything) but I don’t know if thats what I feel. I know my purpose is to be alive and help so I don’t feel bad for being alive, it’s more the fact that I have to watch some of the most amazing people I have ever met die and can not help them. This is what angers me more than anything.
When I was first diagnosed I started looking at random blogs, Instagram hashtags, and countless other peer outlets for young adult cancer fighters. I couldn’t tell you how, but I somehow stumbled across an account of the sweetest and most beautiful young lady; her smile was astounding for her current situation and all of her pictures were full of life and energy. I started following her and reading more about her and it turns out she has been fighting cancer for a few years now (She is now 16). I then went to the Stupid Cancer’s OMG young adult cancer summit in Las Vegas and I saw her. I never said anything to her and I never even made eye contact, the only time I saw her was in passing down one of the large corridors at the Palms Casino. She was walking with her chin held so high, that was the first thing I noticed about her. She was so confident and she seemed like she didn’t have a care in the world even though she was fighting just like the rest of us. She was wearing these combat boots that made her look even more bad-ass! She moved me in that one instant and I can still remember her mom with her halfway grown out ribbon shaved on the side of her head in support of her sick child. The both of them were fierce and unwavering.
We left that summit and I grew more interested in her and kept up with her more and more. She never knew I existed until very recently when she took a turn in a not so good direction. Treatment was working and then it decided to suddenly stop working and actually speed up the tumor growth. This caused a tumor on the bottom of her lung to grow to a pretty large hot dog looking tumor causing her pain. The cancer has not been easy on her and it is being very tricky to say the least. Lauren or Lola is now taking the time she has whether it’s 5 years or 80 years to do what any 16 year old girls wants to do. Little Kings Foundation along with a number of other amazing and inspiring people are doing everything we can do get all of Lola’s wants taken care of.
Lola came down for the first part of her ‘bucket list’ trip last week on Tuesday, July 9th. She flew into OC Airport and went straight down to Santa Margarita for the first meeting with Tamara, another person who was met at OMG in Las Vegas. I had a close and amazing friend Kelsey come up from San Diego to do her makeup professionally. After getting her makeup done we set out to Tustin to meet and hang out with the amazing tattoo artist Dan Smith, owner and artist at Captured Tattoo in Tustin known from Kat Von D’s show LA Ink and lead singer for the band The Dear and Departed among other ventures. We spent a good amount of time chatting and learning about the tattoo world with Dan. After an amazing visit at by far one of the nicest tattoo shops I have ever been inside of, we went to dinner at Rutabegorz across the street. We finished the day a little earlier than we hoped, but she had a long few days ahead of her so we didn’t mind.
The following days were spent with other kind people (all of whom were met and befriended at OMG) doing countless amazing things. She had a massage on the beach, she did yoga on the beach. She went out in LA and spent the night in Beverly Hills. She lived a normal life and how a 16 year old should spend her time, not caring. She was able to forget what she is facing everyday of her life, and for the past 3 years! She laughed and glowed with energy a mere 2 minutes after she was vomiting in the bathroom like someone who had 20 or so too many shots. It didn’t matter because she lived in the moment and the happiness she spread made everyone around her that much brighter. Lola went home a day early, not because she was filling sicker, but she wanted to rest for a couple days before she heads to New York for the second half of her fun filled adventure which will take place this week!
Lola is an inspiration to me. She puts me in check when I think my life seems a little crappy. Lola is the ultimate fighter who takes on her goliath opponent with a smile and a wink. Things don’t always go her way, but she won’t back down. Like all of us in the crappy unchosen war for life, we know what the end game can be. We do not try and hide the fact that one road leads to an unwanted early ‘exit stage left’ and the other door leads to a life well lived. Our theater’s are much more dramatic than most our ages and we carry on. Lola spreads joy and amazing energy and she does this by having peace with herself first and foremost. There is no time for weeping while we are still alive. Feeling sorry for ourselves gets us nowhere quickly so why waste the time we have here doing it? If it is another year or another 80 years, Lola has already inspired more people in her short 16 years than many do in an entire lifetime; and who knows who those people will one day inspire through Lola’s actions. I only hope that I help people the way that Lauren helps me.
Lola always reminds me of one of my all time favorite quotes,
“To live is the rarest thing in the world. Most people exist, that is all”
Follow Lola on her journey as she slays cancer on Instagram @lola_scott1 and Love Like Lola
July 13, 2013 |
Visiting with Debbie a a couple days before she passed away I was brought back to my little one bedroom apartment where I took care of my mom for so long. Seeing her lay in her bed all but in a coma with all same noises and the smell of sanitizers and medicines brought back a flood of memories. All kinds of memories; good, bad, emotional and happy and sad. Debbie was sick for a long time. She fought like a true warrior and no matter how many of her vital organs decided to stop working, her heart was so strong that it refused to stop pumping the fluid of life through her veins. Even after she said her last word, she laid there for a over a week motionless except for the few involuntary twitches brought on by neuropathy, tumors, medicine and who knows what else. She remained strong until the end, as well as beautiful as the day I met her over 22 years ago. If her head was not shaved she would have simply looked like she was sleeping. She did not lose color, she did not lose her positive energy and she did not lose her spirit, even though she never said a word, she was a strong presence.
I met Debbie over 22 years ago and she quickly became one of my ’5 moms.’ We all grew up in the same neighborhood in Anaheim and our families evolved into the closest group of friends you could imagine. For about 10 years between the kids in the families and the adults being just as close of friends, we were with each other nearly everyday in one way or another. As we aged and went to different schools, the kids didn’t see each other as much, but the original parental groups stayed just as close. My father has spent nearly every weekend of the past 22 years with that group of friends in one way or another. Camping trips, river trips and family vacations galore; Debbie was always the one who maintained herself when most of the group couldn’t put down their beers down even after they probably should have. She was the logical thinker who talked the group out of numerous things that no doubt would have led to possible imprisonment or fines. The calm little butterfly with a heart of gold.
In my mind it is hard to understand the bond that they had with each other. I have a very small group of exceptionally close friends, most of which I met in high school and the others my childhood friends. It seems odd that our families did not meet until my parents were well into their 30′s with established jobs and pre-existing friends, but none the less when we all met it was almost as if we became one large family over night.
Debbie was always the quieter one. She was the calm little flower that kept the peace in those times where friendly tempers flared or when things got a little rough. She was the backbone that kept her husband and children together through all the stuff they had to go through. Jessica has always been her pride and Little Mike has always been her joy. Her husband and her have been inseparably in love since their youth and nothing could tear them apart. Debbie fought till her last breath to try stay a little longer just so she could feel her families presence. She was so close to seeing her first grandchild that it is tragic, but through her children’s and husbands memories she will live on in all of her grandchildren’s lives. She will not be forgotten anytime soon. She was one of the most genuine and humble people I have met and was always willing to do whatever she could do to help people.
Even when she was in the middle of her treatment fighting breast cancer, she always supported me through my cancer. She had such a huge heart that when the doctor told her she’s not going to do as well as they had hoped, she was worried about me, not herself but who would take care and help me? She was and is like a mother to me, to all of us. Debbie unknowingly adopted 10 more children when she moved to Anaheim. We all love her just as much today as we did the day we met her. Now you get to watch all of us grow old from afar and one day we will meet again.
Now go party with my Mom and Uncle Charlie until the rest of us get up there and save us a seat!
Cancer really sucks.
“Seeing death as the end of life is like seeing the horizon as the end of the ocean.”
June 26, 2013 |
The road I am on is rapidly becoming more and more interesting. What began as a shocking and devastating blow to myself, my family and friends has somehow morphed into something that I thank God for everyday. Being diagnosed with a ‘terminal’ cancer turned out to be the greatest thing that has ever happened to me. Allow me to explain.
Through all the white noise and chemo, something has emerged from the dust like a phoenix rising from ashes. A part of me died on December 17th, a part that needed to die for me to properly live. I was living a lie and had been since my mother passed away nearly a decade ago now. I knew what I wanted to do with my life the moment my mother passed away. I wanted to dedicate myself to helping others who are fighting a terrible and debilitating illness- cancer. I tried finding jobs in the sector a few times and every chance I had I would attend any type of fund raising event that could help others, especially breast cancer events. I slowly started turning away from that path as I was being let down by job inquiries and the realization that working in the non-profit sector almost certainly meant a life of little to no money and most likely more closed doors than welcoming entries.
The day I was diagnosed I had two thoughts. One: I’m not going to make it past 27. I never told anyone this up until very recently, but I was thoroughly convinced I was going to die at 27. In my life I have known about 8 people who have died, my mother included. The vast majority of the others I knew all died at 26 or 27 of different and absolutely random things. A sprained ankle, turned blood clot that travelled to a heart, a heart attack, a deadly allergic reaction to a prescription drug, a car accident and a suicide to name a few. The people around me who died at 27 had no common thread in any manner other than me. None of the people had mutual friends and I knew each person through different groups of friends. 6 of the 8 people I knew personally died at age 27. I was diagnosed with a mass the size of a baseball at age 27 with 4 months left until my 28th birthday. The day they told me I had the mass I accepted my early fate and I felt as though my deal was sealed. I was living in fear from the day I turned 27 and I felt like my diagnosis was my cue card for the beginning of my end. My second thought was, No. I am not going to die, in fact I am using this as a springboard to start my new life. I made it to my 28th birthday and never looked back.
I am now on a road that will allow me to do what I have always wanted, no needed to do. I have met some of the most amazing, inspiring, motivating and loving people through this. It is absolutely amazing how many people are in this world that truly want to help other people no matter what the cost. I was seriously doubting the direction this world was taking and since being diagnosed I have fully restored my faith in humanity as a whole. You just have to look around and you will find people who want to love and help you. Sometimes they get blurred away by the evil and darkness the media feeds us, but I assure you they are out there.
Before leaving for Portland I went and had a Vitamin C IV. Upon entering I saw a couple younger men around my age, which was a shock because I was so used to entering TLC and seeing only older and semi-sick people. These two young men turned out to be in town just doing an IV as a preventative and health conscious way of being proactive. One of the men turned out to be an NBA athlete and the other a sports manager of sorts. We had a long discussion about life, religion and why we are where we are in life. For nearly an hour we talked and swapped stories. It was a chance encounter, a 1 in a billion chance encounter that introduced me to two amazing humans. This is just another example of how the sequence of events leading up to and post diagnosis have given me new faith not only in God, but a purpose for my life. After their IV’s ended they departed, but no before exchanging information. This morning I received a text and hopefully it is the beginning of another part of something that will help some people who need help at their most fragile time.
I am now on vacation in Portland typing away on my sisters computer. I never realized how imperative vacations can be for de-stressing. This is the first vacation I have had in almost a year. I had to get away from my cancer life, if only for a week it has been the most relaxing and fulfilling vacation I have ever taken. My nieces and nephew light me up with their energy and my sisters smiles bring me back to my childhood when we all lived in our little 3 bedroom mobile home in Anaheim circa 1990. The outdoors in Portland are unreal and my brothers have taken me to some amazing places, including an awesome white water river rafting trip. (COLLLLLLLLLLLLDDDDDD!!!!)
I will be back to real life as of Monday and chemo starts up again on Tuesday, this round will be a milestone as upon completion I WILL BE HALFWAY THROUGH CHEMO!!!!!!!!!!!
This bible verse was sent to me by my new found friend this morning and it resonated immensely with me:
But he said to me, “My grace is sufficient for you, for my power is made PERFECT in WEAKNESS.” Therefore I will boast all the more gladly about my WEAKNESS, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in WEAKNESSES, in insults, in HARDSHIPS, in persecution and in DIFFICULTIES. FOR WHEN I AM WEAK, THEN I AM STRONG.
2 Corinthians 12:9
|Can’t stop smiling. 60 degree water and rapids!
June 7, 2013 |
On June 17th it will be exactly 6 months since the day they cut open my scalp, sawed into my skull and removed a tumor nearly the size of a baseball; which turned out to be one of the most aggressive forms of brain cancer around. I was told everything under the sun could happen to me and the severity of this cancer was almost notorious for immediate regrowth. I prepared myself for a road that I had no idea where would lead, buckled down and changed the entire direction of my life in one day. I guess cancer has a way of doing that.
6 months has almost passed and I went and had another MRI done on Monday. It was the first MRI I had gone two months in between scans and up until the friday before I was overly excited as I was feeling better than I have since before my surgery. And then Friday night I started getting the headaches again. And they seemed to be more severe this time and were almost out of nowhere. I had a very sleepless Friday night going into an ever more symptomatic Saturday. Just a little about me before I go any further, I am very ‘mental.’ Not in the schizo crazy sense, but I analyze EVERYTHING. I have been this way since I can remember and having cancer only made it worse. I am also quite intelligent at times and am very good at finding and recognizing things most people would probably never think twice about. So once I started getting the headaches again, the only baseline I had for anything like that was my tumor. So this lead me to believe there was something going on up there that might not be so great. Needless to say, I was a nervous wreck the next 2 days and during my MRI.
The MRI itself was the longest 30 minutes of my life. I had to try and lay still while fighting of nausea, heavy breathing and the want to get out of the most claustrophobia inducing machine on earth. Once the technician let me out I took the biggest sigh of relief and went to greet Natashia. I told her I did not even care what the MRI said, I was just glad it is over.
So off we go to see Emily, my oncologist to see how my progress is going. We arrive at her office, wait about 15 minutes and the nurse brings us back to her office. I enter her office and she sees me first. She was on speaker phone with another doctor and the second she saw me she picked up her phone and asked the doctor on the other end if he was in his office and if she could go visit with him for a second to go over ‘something.’ After another second she hangs up the phone says “I’ll be right back.” And she is off.
Emily’s office is not very big and I could easily see her two computer monitors of which one was my current MRI and the other was my chart. Well, panic isn’t even close to the right word, but it is the first that comes to mind. After the longest 10 minutes of my life she comes back in and sits down casually and says, “Lets see how the rest of the MRI looks.” I said wait, what was that? ”Oh that wasn’t about you, that was another patient and I can’t talk about other patients in front of you.”
After a near panic attack, anxiety attack and every emotion under the sun she tells me that! I pretty much prepared myself for bad news and an inevitable second surgery, more radiation, who knows!
Well after recovering from that we went over it in depth and my MRI came back absolutely perfect!!! No new regrowth, no residual swelling and I am actually healing quicker than expected!! All good news and no bad news, those are the days I love.
Thank you all again for following my progress and supporting me. It means the world to me and I love hearing stories of people telling me I inspire or give them a little perspective on life, because lets face it, we don’t have it all that bad, do we?
“Make your time here meaningful, leave a mark on the world people won’t forget for anytime soon. Even if it is only your family, make sure people know you were a force for positivity and an example to follow. Who knows who you might influence.”
|Finding ways to entertain yourself while waiting for doctors is always a chore.