Family and Friends: I Love sharing my story with you all. As you know my favorite things to share are my kids and people helping people. My goal in to show you how awesome my family is or to make you smile. There is so much negativity in the world i like to share the good things. I don’t share much personal stuff on here so this next post is going to be quite hard for me.
There is a part of my story that I have kept silent for some time now. Every time I open up about it I seem to gain a new understanding or some knowledge that may help me. I am not ashamed, I was just hoping to tell this story from the other side but it’s taking a little longer than I hoped. If you’ve been wondering why i haven’t been around or as involved as much as usual, here’s why!
Feb. 23rd 2017, I got a phone call telling me that I had metastatic melanoma. Yes, a phone call! I had a swollen lymph node on my right side, went to a surgeon and had it removed. Feb. 23rd they called and told me what it was. If you want to hear about how horribly they delivered the news I can tell you in person. But, lets not dwell on the lame parts of this story!. So, here’s the deal. I got some scans immediately and nothing else showed up. I was elated!!! The doctors at SCCA at Evergreen put me on immunotherapy as a “insurance” plan. It’s called adjuvent therapy. Well, this therapy made me super sick last summer. I was sick from the 5th of July until about the 15th. (103 degree temp etc…). They took me off this therapy and gave me a high dose of prednisone. That is the worst good drug out there. If you’ve ever had it, you know what i am talking about. It makes you feel like you drank 16 cups of coffee and you are severely agitated. (sorry Jessie)
Sept. 2017 we did a scan and found 6 new locations of potential disease. Two of which are on my liver (no bueno). I started a new immunotherapy called pembrolizimab (same as Keytruda ads on TV) and this had a mixed response but was not working as well as we hoped so, they placed me on a “clinical trial”. I tried that for a while, it sucked; bad side effects and had to get shots in my stomach daily for a while. The side effects have been rough. I had some serious migraines (which I never suffered from before), hearing loss, ringing in my ears, cluster headaches with stroke like symptoms etc… (Thank you Mercer Island Fire Dept., I hoped I would never have to call you but you were great). Needless to say some of the side effects have sucked! Good news, almost all of them have reversed!!! Yeah! I did some scans after being in the trial for a while and they found that I had 26% tumor progression. They allow up to 20% but 26% was too high so they took me off of the trial. The good news is my tumors were really small so 26% progression means they are still small.
This brings us to now. I recently got in touch with some friends who encouraged me to go to CA to get some opinions. I have seen doctors at UCLA and MD Anderson in Texas. I have been to Texas two times in the last two weeks and have had a couple of tumors removed in the event we try T-cell therapy in the future. Right now I am eagerly awaiting to find out what my next treatment plan will be. I had surgery last week and am still recovering. It has been very painful but getting better slowly. The good news is that although my diagnosis is "stage 4 metastatic melanoma" there are a number of different treatment options still available to me. (the stages are based off of the last 10 years of survival rates. The medications today were not even available 2 years ago) I am an optimist to a fault as you all know. This has been a hard battle and will continue to be hard but I WILL WIN! I repeat, I WILL WIN!. I would love any and all support you can spare. I am a helper and i am terrible at asking for help when i need it.
I want to give a big shout out to my wife Jessie and my Family. There is no way i could do this without them. Jessie has taken care of all the paperwork (there is TONS) so i can just focus on being healthy and not thinking about it until i need to. Jessie is a rockstar and i am thankful for her daily. My parents and in laws have helped us with airfare and hotel stays while traveling to all these appointments. I didn't think having an illness could require so much travel and travel is expensive, especially when it's last minute. Not worrying about the financial burden of these trips has been amazing. Thank you to everyone that already knows and has been helping silently. There are many of you that have provided prayer, hugs, dinners etc.
This is the first time in my life i have been dealt something i can't "handle" on my own. I have learned a lot over this past year and continue to learn daily. first and foremost i have learned i need to lean on other people when i need them.
Don’t be offended if I didn’t tell you about this. I shared this with few people hoping it would be a quick battle and i could tell my story when it was over.
What can you do/How can you help:
-I DON’T KNOW HOW YOU CAN HELP, IM TERRIBLE AT ASKING FOR HELP!
-DO NOT TALK ABOUT THIS IN FRONT OF MY KIDS! (they know but let me handle any discussions about it)
-DON’T TREAT ME LIKE IM SICK (if you do, i may punch you in the throat and ask how you are
This is a part of my story now, what it means to be Kirk Robinson, K-Rob, Kirky, Nino, hollywood, surfer boy or whatever you may call me. I wouldn't have picked this part of the story line, that's for sure. No sense being upset at the cards your dealt, just play them the best you can!
I have met several people along this journey that i wouldn't have met otherwise. I am thankful for their support and their encouragement to share my story! Jim Brown, Ann Jarris Adam Throop, Melinda McKinley-throop, Rob Sweet and my "text prayer group". One group of people Monster and Sea heard my story through a friend and i found a card in my mailbox with some money to help us out. Timing could not have been better! I was so choked up that a group of people would want to help like this. It meant more than you can imagine!
Please keep me and my family in your prayers! I know God has control over this. I pray daily that my eyes are open to the things around me and that i will be healed.
I am a Blessed man, I am so lucky to have the family and friends that i do. I am thankful daily!
HERES TO KICKING CANCERS ASS!!!!! IT'S GONNA HAPPEN!
"Made weak by time and fate, but strong in will, To strive, to seek, to find, and not to yield." Alfred Lloyd Tennison