ago my life changed. I got a cal at work and my world got flipped, turned upside down. It is still strange and foreign to me and this battle is far from over, in fact it has just begun.
I have never been able to sit still, I don't call it ADD because I have no problem focusing or paying attention, I simply always felt as if I was wasting my time by not doing anything. I sometimes have a hard time watching television shows because I feel like I am wasting time not being productive for myself or someone else, and this was before I was diagnosed. I also know that part of the reason I felt so wasteful in doing nothing was because I always knew I was meant for something, anything more than what I was in life. After I was diagnosed, this multiplied by about a thousand which is quite troublesome and contradictory to what every doctor suggests I do. They all want me to heal, not be active and stay in bed. There is a problem with this, because laying in bed now unless it is past 10pm or before 9am gives me anxiety. I am 99% sure I will beat this and be an exception, but in the back of my mind I CAN NOT deny what I am up against. I know the statistics, and I know that this will be a part of me for the rest of my life. I also know that what I have put into my body these last 3 months will almost certainly lead to an earlier death than anyone would hope for. I really had no choice in the matter and I accept that, but I am hoping and praying I still get at least another 30 years out of this thing we call life, but even that is not guaranteed.
Yesterday was the 5 month 'anniversary' from the day I found out I had tumor slightly larger than a golfball in my head. Yesterday was also supposed to be the last day of my second round of my chemo injection, until it was not. I drove out to UCLA, which after a nice detour and quick tour of South Central due to my fathers uncanny navigation skills led us astray for about 30 minutes turned out to be the longest drive to LA ever. We arrived at my doctor and I was already feeling quite drained, nauseated and weak. My nurse came in and said my blood work which I had done on Tuesday came back low and they wanted to re-test to see if it had gone back up in the past 4 days at all. Well after my 247th blood withdrawal the results came back far worse than they were on Tuesday. My white blood cells had dropped to under 1.5 and my total immune system counts were down to .7 where the .5 mark is the panic button. This is by far the lowest my counts have ever been and now I realized why I felt so terrible. I was told my counts were far too low to continue on the chemo and I needed a break. If I continue to trend downward, they would have to take counteractive measures to help boost my immune system back into shape and so, I am now BUBBLE BOY! I will re-test again on Monday to see where my counts are and I hope they start working their way back up because from what I hear about the counteraction methods they have to boost immune systems, they do not sound like fun.
This new 'bubble boy' lifestyle I will live for the next few days is not what I had planned for this weekend. I try my hardest to stay busy and productive with every second of every day and sitting around now more than ever makes me feel like I am literally wasting my life. On top of that, I can't even exercise or do anything active because my body is fighting a major internal war and needs all the energy it can muster and there is absolutely no extra fuel in my body right now for external activity. I can not see friends and for the most part I feel like leaving my bedroom could be dangerous. (I now have a new understanding for people suffering from agoraphobia!)
No, this was not the news I wanted to hear and after all of the good things that have happened in the last month, this is just a minor setback and to be honest should have happened long ago. Most everyone faces this hurdle at some point during intense chemotherapy treatment and I was lucky to go as long as I did before having to deal with it. I will be just fine and I am certain that when I re-test on Monday I will be right as rain and back to my 'normal' life again. The only thing is they wanted to increase my chemotherapy dosage AGAIN and I can guarantee that will not happen. I am willing to do anything to beat this, but putting myself into a potentially life threatening state due to treatment seems kinda counter productive, right?
__________________________________________________
On a side note about The Little Kings Foundation:
We have been progressing steadily, but slowly. We want to figure out the best and most sustainable option for our foundation that will also allow us to be most productive and beneficial to our mission. We have been talking with lawyers, other similar foundations and countless people who have been of immense help to Ryan and myself. I am a grand optimist and I know that, I also know the reality of most non-profit foundations and the road that they usually lead down, but I think with all of your help and the amazing support of some amazing people- The Little Kings Foundation has the potential to be something very big. I hope one day it can be a platform to help every young adult facing a tough cancer live his or her life to the fullest. We have nearly nailed down our logo and things are moving along nicely. It is only a matter of time before we start our little part in something big and I hope you all will want to join us.
Have AN AMAZING WEEKEND!!!! Tell your friends you love them and compliment everyone who you encounter.
FTGF,
Ryan
xo
We can't always change the world alone, but we can play our little part in something big and try like hell.
I have never been able to sit still, I don't call it ADD because I have no problem focusing or paying attention, I simply always felt as if I was wasting my time by not doing anything. I sometimes have a hard time watching television shows because I feel like I am wasting time not being productive for myself or someone else, and this was before I was diagnosed. I also know that part of the reason I felt so wasteful in doing nothing was because I always knew I was meant for something, anything more than what I was in life. After I was diagnosed, this multiplied by about a thousand which is quite troublesome and contradictory to what every doctor suggests I do. They all want me to heal, not be active and stay in bed. There is a problem with this, because laying in bed now unless it is past 10pm or before 9am gives me anxiety. I am 99% sure I will beat this and be an exception, but in the back of my mind I CAN NOT deny what I am up against. I know the statistics, and I know that this will be a part of me for the rest of my life. I also know that what I have put into my body these last 3 months will almost certainly lead to an earlier death than anyone would hope for. I really had no choice in the matter and I accept that, but I am hoping and praying I still get at least another 30 years out of this thing we call life, but even that is not guaranteed.
Yesterday was the 5 month 'anniversary' from the day I found out I had tumor slightly larger than a golfball in my head. Yesterday was also supposed to be the last day of my second round of my chemo injection, until it was not. I drove out to UCLA, which after a nice detour and quick tour of South Central due to my fathers uncanny navigation skills led us astray for about 30 minutes turned out to be the longest drive to LA ever. We arrived at my doctor and I was already feeling quite drained, nauseated and weak. My nurse came in and said my blood work which I had done on Tuesday came back low and they wanted to re-test to see if it had gone back up in the past 4 days at all. Well after my 247th blood withdrawal the results came back far worse than they were on Tuesday. My white blood cells had dropped to under 1.5 and my total immune system counts were down to .7 where the .5 mark is the panic button. This is by far the lowest my counts have ever been and now I realized why I felt so terrible. I was told my counts were far too low to continue on the chemo and I needed a break. If I continue to trend downward, they would have to take counteractive measures to help boost my immune system back into shape and so, I am now BUBBLE BOY! I will re-test again on Monday to see where my counts are and I hope they start working their way back up because from what I hear about the counteraction methods they have to boost immune systems, they do not sound like fun.
This new 'bubble boy' lifestyle I will live for the next few days is not what I had planned for this weekend. I try my hardest to stay busy and productive with every second of every day and sitting around now more than ever makes me feel like I am literally wasting my life. On top of that, I can't even exercise or do anything active because my body is fighting a major internal war and needs all the energy it can muster and there is absolutely no extra fuel in my body right now for external activity. I can not see friends and for the most part I feel like leaving my bedroom could be dangerous. (I now have a new understanding for people suffering from agoraphobia!)
No, this was not the news I wanted to hear and after all of the good things that have happened in the last month, this is just a minor setback and to be honest should have happened long ago. Most everyone faces this hurdle at some point during intense chemotherapy treatment and I was lucky to go as long as I did before having to deal with it. I will be just fine and I am certain that when I re-test on Monday I will be right as rain and back to my 'normal' life again. The only thing is they wanted to increase my chemotherapy dosage AGAIN and I can guarantee that will not happen. I am willing to do anything to beat this, but putting myself into a potentially life threatening state due to treatment seems kinda counter productive, right?
__________________________________________________
On a side note about The Little Kings Foundation:
We have been progressing steadily, but slowly. We want to figure out the best and most sustainable option for our foundation that will also allow us to be most productive and beneficial to our mission. We have been talking with lawyers, other similar foundations and countless people who have been of immense help to Ryan and myself. I am a grand optimist and I know that, I also know the reality of most non-profit foundations and the road that they usually lead down, but I think with all of your help and the amazing support of some amazing people- The Little Kings Foundation has the potential to be something very big. I hope one day it can be a platform to help every young adult facing a tough cancer live his or her life to the fullest. We have nearly nailed down our logo and things are moving along nicely. It is only a matter of time before we start our little part in something big and I hope you all will want to join us.
Have AN AMAZING WEEKEND!!!! Tell your friends you love them and compliment everyone who you encounter.
FTGF,
Ryan
xo
We can't always change the world alone, but we can play our little part in something big and try like hell.
 |
| Me and Iggy are gonne be BBEEESSSTTTTT friends for a couple days! |
Ryan,
ReplyDeleteYou are being tested and it is a test that you must face alone. You have so many well-wishers and a wonderful support system, but you are like David facing Goliath, alone on the field of battle. You know what I mean.
With the greatest respect,
SRH
Ryan,
ReplyDeleteWhat is an email address we can reach you at?
John.coffelt@laverne.edu
Delete