New and in search for answers

Themannzachy671

Hi beautiful people, 

I‘m 22 years old and was diagnosed with Stage 4 Colorectal Cancer, more specially called Goblet Appendiceal Carcinoid back in January of this year. From what the doctors say, I’m a Unicorn. No one around my age has been diagnosed with this type of cancer in the US, but globally there are only 34 others like me. My story can be a little confusing because of how fast everything happened, so I’ll jist cut to the chase. I’m from Guam but go to CU Boulder in Colorado. I was about finish up my bachelors until my symptoms got traumatically worst when I was home over the winter break. Trying to make this long story short, my mom and I had to temporarily relocate to Los Angeles due to the lack of resources back home. When I got to USC Keck Medical Center, doctors thought it would be a simple bowel resection but once they opened me up, my tumor had grown larger and lies directly over a major artery in the abdomen—they had to leave in the tumor and declared it as stage 4 because it had spread to my bones and then later broke through the colon wall. After a post-op infection and a week and a half in the ICU, I finally started chemotherapy in April. My oncologist decided the right course of treatment was FOLFOXIRI, which is from my understanding the most aggressive course of treatment. After 6 rounds I was referred to UCSD for the HIPEC surgery, but due to the location of my tumor, I was not a suitable candidate for the surgery. After discussion with my oncologist at USC, (and as I’m getting ready for round 9 tomorrow 8/12), the number of rounds is indefinite and kept at every other week. 

 

My Family and I came back from a recent trip back home and it was beautiful, and much needed because I was reminded of the incredible power of love, but it made me realize how very fragile and beautiful our lives are. It’s been a horrific journey, and to be quite honest, I’m exhausted. I feel like my cup has runneth over but yet I’ve also decided to catch everything overflowing— I don’t want to quit. Im not able to get treatment back home where there is a larger and better support system because my doctors are scared of not being able to micromanage me and Guam does not have  resources either. There’s no one here besides my mom and there’s nothing here but pain for me. When I was back home, friends and other family members gave me a reason to continue when I didn’t want to.  I mean, there’s a lot more to this conversation than what I explained, but my main questions are how did you get through it? Also, am I wrong to think this way (the possibility of stopping)? I’ve had to seriously sit myself down and think about my mortality. Every time I go through chemo, it makes me feel like I want to die for the 3 days I’m on it, and then having the side effects last for the rest of the week on top of having a fissure (an interior anal tear—I’ve had it since starting). I’ve lost recognition of and stopped loving myself. I feel like I’m a withering wallflower watching everyone’s lives move on as I watch, unmoved and useless. I don’t want to quit for me and my amazing family, but when is enough...enough? I visualize my future and I see it—it’s radiant and warm, but it feels like only that, a dream. I’m going to check out another support group here in LA because the one I went to was once a month. The one I’m going to on Thursday is weekly for ”young adults”. Maybe that’ll help me too, but please...from a lost and confused person, how did you get through the worst possible thing in your life?

Sincerely,

Zachy

beaumontdave

Welcome to the group no one

Welcome to the group no one wants to join, I looked up your type of cancer and it is so rare there's not much to read on it. That and your youth does make you exceptionally rare, but the adaptations and mental adjustments are the same for any late-stage, life threatening disease. Click on my name/moniker to get my story, it will save time and typing. One of the first things we learn is to live in the moment, something you seem to intuatively understand. It's clear you have much your fighting for, the way you speak of home, and the folks that love you. Holding those things close is a big thing when you're sick from treatment or facing surgery again. At the very worst of my path, when I was facing my third major surgery to get the cancer out of my liver, and the wife was in and out of another hospital for complications of the brain tumor that would take her, I only thought of the next step in front of me; work, food, sleep, I found joy in ice cream or a Packer's game, anything I could lose myself in for awhile. I took Xanax to sleep occasionally, or to meet with the doctors, I learned and read on mindfulness, meditation, and stoicism. Any discipline that trains the mind to not to go over and over facts and fears and future possibilities, is useful. You educate yourself on the science and treatments of your particular cancer, but dwelling on things is just how we humans seem to make fear and pain so much worse. Live in the moment, find things you can enjoy where you are, I walked, sometimes until I was too exhausted to think. Tell yourself that you're at the beginning of a long road, that you will get used to and through these hard times, it's always terrifying at first, then we adapt to the circumstances, at least give your self time to see if things improve. Your young and strong with plenty to fight for, imagine guys your age who went to war, how awful the change and painful the experience was, yet many endured to come home again. If it gets to the point of no hope and no quality of life, then you'll be right to make whatever decision you choose, it is your life. Best of luck to you..........................Dave

Kazenmax

I'm heartbroken to see you

I'm heartbroken to see you joining this group. It's so unfair! It's terrible that you must faced this awful disease at such a young age.

Ok, now to the fight! Everyone in this group understands what you are going through. It won't be easy but you have to gather  strength from your friends and family. I know you are not home with them but through social media they can support you. We will support you as well.

You face an uphill battle but you are young. As Dave said live in each moment because ultimately it is all we have. Look for the positives. Wait and see what treatment accomplishes. There have been many on this board who have overcome the worst and continue to live. 

Do not take this lying down. I wish I could say more but we each go through our own struggles. Know that we are with you.

Sending peace, love and strength to you. Feel free to lean on us when it gets hard. 

K

wifetojeff69

I'm so sorry to hear about

I'm so sorry to hear about your situation, I have a son your age and couldn't imagine him having to go through what you are. My thoughts and prayers are with you on this journey, I agree so much with Dave. I am a person of faith so I keep my head always looking up. Hope you can find joy in the midst of all of what you are going through. Family is so important and it seems like you have a wonderful caring support system.

wifetojeff69

beaumontdave said:

Welcome to the group no one

Welcome to the group no one wants to join, I looked up your type of cancer and it is so rare there's not much to read on it. That and your youth does make you exceptionally rare, but the adaptations and mental adjustments are the same for any late-stage, life threatening disease. Click on my name/moniker to get my story, it will save time and typing. One of the first things we learn is to live in the moment, something you seem to intuatively understand. It's clear you have much your fighting for, the way you speak of home, and the folks that love you. Holding those things close is a big thing when you're sick from treatment or facing surgery again. At the very worst of my path, when I was facing my third major surgery to get the cancer out of my liver, and the wife was in and out of another hospital for complications of the brain tumor that would take her, I only thought of the next step in front of me; work, food, sleep, I found joy in ice cream or a Packer's game, anything I could lose myself in for awhile. I took Xanax to sleep occasionally, or to meet with the doctors, I learned and read on mindfulness, meditation, and stoicism. Any discipline that trains the mind to not to go over and over facts and fears and future possibilities, is useful. You educate yourself on the science and treatments of your particular cancer, but dwelling on things is just how we humans seem to make fear and pain so much worse. Live in the moment, find things you can enjoy where you are, I walked, sometimes until I was too exhausted to think. Tell yourself that you're at the beginning of a long road, that you will get used to and through these hard times, it's always terrifying at first, then we adapt to the circumstances, at least give your self time to see if things improve. Your young and strong with plenty to fight for, imagine guys your age who went to war, how awful the change and painful the experience was, yet many endured to come home again. If it gets to the point of no hope and no quality of life, then you'll be right to make whatever decision you choose, it is your life. Best of luck to you..........................Dave

Dave, I just read your story.

Dave, I just read your story. I didn't know that you could do that. Itt was very encouraging and sad, I'm so sorry for the loss of your wife and what you both went through let alone at the same time, but your positive attitude and approach is very encouraging, thank you for sharing your story. And congratulations on your 5 year NED. 

MDee-16

The group no one wants to join

Hi Zachy,

You are a very brave young woman and I salute your strength.

 My husband has stage 4 colon cancer and although my connection is obviously not direct,  I can tell you that as collateral damge I hurt and feel for him as I do for you.

 I can only say that it is hope and positivity that should direct your heart and your mind. Sometimes, it is that little light in the dark that glows the brightest within our spirit 

 Keep brave and strong and know you are not alone.

Best to you,

MDee-16

 

shofram

The group

Hi everyone, and hey Zachy- I'm so sorry you're going through all this. It's been difficult for me to find other young people with similar experiences as you describe in your moving post. I'm a 29-year-old male, my name is Sam, and I was 28 when diagnosed August 2018 with stage IV appendiceal carcinomatosis, which had spread throughout my abdomen via my peritoneum. My oncology team told me that my cancer type was rare. I was prescribed bi-weekly FOLFOXIRI (my docs charmingly called it "the big guns"), of which I received 14 rounds before cytoreduction/HIPEC in February 2019. I've been cancer-free since then.  

This could be lingering depression speaking, but there is very little I feel I can offer, in terms of advice, because I recall feeling so desperately sick each treatment session that the only thing that could possibly help was to stop receiving it altogether. I can't assume that you want advice, either, but maybe sharing some of my experience helps. 

Receiving FOLFOXIRI was horrifying, and I sympathize with the "feel like I want to die for the 3 days I'm on it" and the awful, poisonous way the effects continue to torment for many days after being disconnected from the drugs. I had similar complications (anal fissure), and I had a similarly dark relationship with my mortality, as it felt like I was living in a nightmare from which there was no reasonable escape. I considered quitting chemo often, because the pain it caused me and my family didn't seem to be worth it. I was also hopeless, and the chemo was so debilitating that I was always scared, always in pain, and physically unable to help myself. 

While your experience is unique only to you, know that you are not completely alone, and you'll never, ever be wrong to think about yourself and your wellbeing. Please feel free to contact me if you want to talk about anything at all. 

 

Sincerely,

Sam