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#fuckdesmoids

Posts tagged as #fuckdesmoids on Instagram

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UPDATE:  The road to nowhere will always have a destination in the end, the decision is yours to enjoy it. I have found that when I let go of the expectation I enjoy the outcome so much more. I have worked out the kinks in my insurance and have finally gotten the approval for the chemo I’m going to be doing. I start Tuesday morning and will be on it for a unknown period of time. But I’m ready for this next challenge. I hold little fear but great optimism in what the future holds. Be strong today. #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #heavenaintready
There have been too many times that my life should have been taken, this tattoo might be the most meaningful one on my body. I truly know that I’m here for a reason, to give back, and to share my experiences with others so that they can find strength themselves. I don’t know why I have been given this life, but I am eternally grateful for everyday I have here. #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #heavenaintready
A friend of @fuckcancer is a friend of ours 🤝 Love ➕ Support to @lyon_herron “Today was another emotional rollercoaster but it’s all good! Hopefully my insurance clears the chemo by next week so I can start going at that. But also found a trial that has a potential promising outcome if I can get into it. All in all I should have nothing to complain about. Thank you to everyone who sent love and support. I will keep you all updated as I find out more. Till then, I’ll stay positive and keep living!” #fuckcancer #fuckdesmoids #family #friends #beersandballs  #goplay  #love #lovealwaysbeatscancer #pma
Today was another emotional rollercoaster but it’s all good! Hopefully my insurance clears the chemo by next week so I can start going at that. But also found a trial that has a potential promising outcome if I can get into it. All in all I should have nothing to complain about. Thank you to everyone who sent love and support. I will keep you all updated as I find out more. Till then, I’ll stay positive and keep living! #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma
Still so stoked from this weekend! Knowing the side effects of what I’m going to have to go through in a couple of days really seems easier after having such a fun filled time with such rad people! Thank you @fasthouse_ & @41kenny for refilling my happiness jar! And thank you @d.p._33 & @n_petracca333 for the hospitality! I’m ready for battle now! #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #fasthouse #ditd21
What an amazing weekend at the @fasthouse_ #dayinthedirt. I had the pleasure to race the team races with my good buddy and fellow cancer warrior @n_petracca33. It was such a fun time to get my mind off of everything that has been going on. A quick reset button to get me ready to start chemo in 4 days. Also was finally able to show my ever so supportive girlfriend, @danicalocker what I love to do! Thank you @41kenny and everyone over @fasthouse_ for putting on such great event! I’m one happy man! #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #fasthouse
I woke up feeling extra thankful this morning. I have a roof over my head, my mom has a house to live in, I have a beautiful girlfriend, I have people in my life that truly love and care about me, and so much more. I find myself talking to people and a lot is about what they don’t have, we need to be remember to be thankful for what we do have. Enjoy today, hug your loved ones, give a helping hand to a person in need, and remember everything we go through in life is only temporary. Love you all #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #thankful
MEDICAL UPDATE.  Just went over the gene sequencing results with my oncologist. Not really what I wanted to hear but it is what it is and I’m not giving up, EVER! The tumor has not changed it’s sequencing therefore I am still not compatible or responsive to any treatments or clinical trials. They also checked to see if I would be responsive to any immunotherapies and my stubborn tumor came back highly unlikely to respond to that as well. We have put a game plan in action... I will start on a Chemo that I did in the past next week, Sorafenib: I didn’t see any shrinkage but from what we recall, we didn’t see any growth. Then in a month I am going to try and get insurance to approve the immunotherapy drugs and try two of them at the same time. 🙏 Maybe if I come at it through different aggressive angles it will at least stop growing. I am continuing the CBD and everything else I have learned to do to keep my body at optimal health. One day at a time, one more mountain to climb 🙏 I love you all ❤️ #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #pointdumebomberos
Alrighty then... MEDICAL UPDATE.  Just went over the gene sequencing results with Lyon and his oncologist. Not really what we wanted to hear but it is what it is and we are not giving up, EVER! The tumor has not changed it’s sequencing therefore he is still not compatible or responsive to any treatments or clinical trials. They also checked to see if he would be responsive to any immunotherapies and his stubborn tumor came back highly  unlikely to respond to that as well. We have put a game plan in action... he will start on a Chemo he did in the past next week, Sorafenib: we didn’t see any shrinkage but from what we recall, we didn’t see any growth. Then in a month we are going to try and get insurance to approve the immunotherapy drugs and try two of them at the same time. 🙏 Maybe if we come at it through different aggressive angles it will at least stop growing. He is continuing the CBD and everything else he has learned to do to keep his body at optimal health. One day at a time, one more mountain to climb. 🙏 #fuckdesmoids #wegotthis #cancerdiaries #lovebeatscancer We love you all! 💜
Today I was able to make my peace with our long lost home. This week has been a roller coaster of emotions for a lot of us. I’m so proud to call Malibu my home and to have my friends by my side. You all carry me when I fall. We are in this together and we will move forward as one. PDB for life. Medical updates coming tomorrow. #pointdumebomberos #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma
Through all the chaos of the fires, the eminent fear of my medical future, and life in general, THIS is my constant form of joy. There are only a very few things that give me extreme freedom and this is one of them. Our future will be bright no matter what the circumstances are. I’ll get results back from my needle biopsy on Tuesday which will tell all for my near future. Let’s all stay positive and keep living. 📷 @rdpics #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #pointdumebomberos
I was able to link up with @bryannabradleyphotography the other morning for a magical session. It was the first time I’ve ever been exclusively shot for surfing. It was a dream come true to say the least! I can’t thank @bingsurfboards surfboards for this amazing opportunity! I’m so beyond grateful for the life I get to live!! I’m riding a 9’8” Pocket Knife. #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #bingsurfboards
In honor of rare disease day I am a rare unicorn 🦄 I’ve been battling my Desmoid tumor for 2 years now with 2 surgeries and countless therapies later. Desmoid tumors are rare, affecting an estimated 1 to 2 per 500,000 people worldwide. #desmoidtumor #desmoidsaredicks #desmoidtumorawareness #tumorstrong #unicornrare #chemosucks #fuckcancer #fuckdesmoids #desmoidwarrior #berare #cancer
This morning I wake up with extra gratitude than normal. I am so thankful for the life that I’ve been given the past 4 years and I have learned so much about myself. I’ve learned to love every moment so much more. I can tell you that it hasn’t been easy, but the rewards have been unparalleled. It has given me love, acceptance, strength, courage, gratitude, and so much more. Thank you to everyone who has helped get me to this place, I love you all. #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #sober
Happy Halloween 👻 get out, have fun, and live! #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma
The amount of love and support I’ve been feeling once again is indescribable. I truly do feel so blessed in this life. I have so much to thankful for today. Sure my tumor is growing and it’s not necessarily in my favor, but I can’t let that stop me from enjoying every minute I get on this earth. I get to go through this journey and to me it really isn’t a burden, it’s a gift to see life through open eyes. So be more grateful for what you have today. #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma
@Regran_ed from @brodyjenner -  SHOW MY BROTHER SOME LOVE!!!!! ❤️❤️❤️ #lovebeatscancer #repost @lyon_herron ・・・ I’ve been in this medical game since I was 4 years old, 22 years later I am facing an obstacle that seems so familiar yet significantly foreign. I feel like I’m sitting in limbo at a crossroad in my future, I don’t know if there’s a treatment that will work and this tumor is inoperable. But with that being said I sit in so much gratitude of how amazing my life is. As much as my mind wants to wander into the future and frighten me, I remember to stay in this moment and not let it all overwhelm me. So stay present today and love more. #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma - #regrann
SHOW MY BROTHER SOME LOVE!!!!! ❤️❤️❤️ #lovebeatscancer #repost @lyon_herron ・・・ I’ve been in this medical game since I was 4 years old, 22 years later I am facing an obstacle that seems so familiar yet significantly foreign. I feel like I’m sitting in limbo at a crossroad in my future, I don’t know if there’s a treatment that will work and this tumor is inoperable. But with that being said I sit in so much gratitude of how amazing my life is. As much as my mind wants to wander into the future and frighten me, I remember to stay in this moment and not let it all overwhelm me. So stay present today and love more. #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma
I’ve been in this medical game since I was 4 years old, 22 years later I am facing an obstacle that seems so familiar yet significantly foreign. I feel like I’m sitting in limbo at a crossroad in my future, I don’t know if there’s a treatment that will work and this tumor is inoperable. But with that being said I sit in so much gratitude of how amazing my life is. As much as my mind wants to wander into the future and frighten me, I remember to stay in this moment and not let it all overwhelm me. So stay present today and love more. #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma
Moments like this make me realize what life’s all about, simplicity. This is Atti and I was fortunate enough to be able to take him for his first surf ever through @therasurf. He couldn’t stop smiling and telling me how amazing it was to fulfill his dream of surfing. I couldn’t help but let out my own emotions as we paddled back out as I shed some tears of pure joy. This is what it’s all about, being able to give back the joy that has given me so much in life. #fuckcancer #fuckdesmoids #lovealwaysbeatscancer #pma #giveback

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