Tuesday, October 22, 2013

One year later.

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."

1 comment:

  1. Hi! I stumbled across your blog-I'm being treated for a midbrain astrocytoma at UCLA, and just had a consult with Cloughsey's team today.

    I wish you well in this battle.