Mediastinal Teratoma Tumor, 8mo. post-op Update
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- čas přidán 27. 07. 2024
- It has been 8 months since the 13hr surgery (Double Clamshell Thoracotomy w resection + decortation) of tumor. a brief update / where am I now? Home thankfully, still struggling with several things though unfortunately. Nothing in life comes free or easy, right?
I just want to say THANK YOU, to Everyone who has taken time to follow this, watching / commenting / subscribing hearing my story. It means the world to me. I hope that something in my experience, can help someone one day.
Please let me know if there's something you'd like to know, questions you have, etc..
Thank you all, God bless!
For those asking, I've created a donatiin site here:
givesendgo.com/Teratoma-T?utm...
if that's something you decide to do, I pray God return the favor to you many times over! God bless.
Hang in there, sweetie. I’m keeping you in my prayers. I had PICS, and I can tell you it gets better with time. I was in the ICU for 3 weeks on a ventilator. My kidneys shut down, so I was also on dialysis. My heart developed an arrhythmia and had to be shocked back into a normal sinus rhythm twice. I was given a 50/50 chance of survival. I ended up having a stroke due to the arrhythmia, and spent two months in rehab learning to walk again. I was only 32. To this day, 6 years later, the doctors have no idea what caused all this. Fortunately, I’m better now, but I do get scared that it could happen again. Oh, and Bowser is a cutie.
WOW! First of all, THANK YOU for sharing. Brave and bold. Aside from me, know that someone will see this one day and will I know will be encouraging for them (as well as me)! That sounds terrible. The ventilator is no joke, but I can't t imagine getting the shock treatment. We're you conscious for that??? Sounds like God's got a real plan for you, quite a special gal to have gone through so much and still be here today! I certainly hope you're doing well today and into the future! Don't fear, it does you absolutely no good, just causes more stress and strain on the heart! I guess I'm a bit of a hipocrite for saying that, but I sure do try! Do yourself a favor and don't ever let fear overcome or control you!
Thanks again for watching and writing! I love getting to chat with you all and hear your experiences. Be careful, Bowser's a ladies man and certainly loves compliments! Lol 😂
You’re an amazing young man! So strong & really brave, facing all that while retaining your wicked sense of humor!!!🌸🌸🌹
@@Teratoma-T no, I wasn’t conscious when they performed the cardioversions (shocks), thankfully. In fact, I don’t remember my first two weeks in the ICU at all. I just remember walking into the ER with my family. The third week there was awful. It had its funny moments though I was having all these hallucinations from the stroke, and one I remember the most was the shrine someone was building for Godzilla right outside my room. I try not to worry about it happening again. I guess it’s the fear of the unknown. It does lessen with time, but I don’t know if I could ever go through that again.
@@noelle1225 @noelle1225 WOW.... That's wild. The memory thing is tricky. It's typical to forget a lot of it. In fact some drugs are purposely given to "erase the memory" of the whole ordeal, because let's face it..... It's traumatic. I seem to remember a large majority of my stays, but the memories are all scattered, out of place, and sometimes can't be recalled when I want. It's almost like watching a movie that's totally out of order, the ending happens 15 min in, and the beginning towards the end. All the bits in-between just scattered nonsense. That's what it seems like.
Hallucinations are the real deal. It's amazing how powerful the mind is and how it can't play tricks. I know I had plenty of episodes, most of them in the "mini" variety that would happen as I go through the day / nights, have conversations, etc...
Sounds to me like you're much stronger than you give yourself credit for. I wouldn't wish it upon you but I'm sure youd do it again, even better than the first time. I know the feeling though. I can't even fathom the idea of another surgery in that space. Thanks for writing yet again, so nice to talk to you all and hear your stories / words of encouragement. I very much appreciate it!! Take care, God bless!
Praying for you... the LORD knows... and will continue to carry you through. Keep your eyes on Jesus ❤
🙏 Amen
I am a massive proponent of animal therapy. They are angels on earth. Glad you have Bowser, he’s very handsome. ❤️🇨🇦
Thanks so much for the update. You look wonderful, I'm so sorry you have constant pain. But I'm so glad you believe in God and have your beautiful wife and all of your family for support. When my Mom was 37 she had cervix and uterine cancer. She was very lucky to have it removed and have no chemotherapy. When she was 61 she had a teratoma tumor removed that had skin, hair and teeth. She called it dirty hairy lol. She is now 83 and is going strong. I wish the same for you. I will pray often for you and your family. Keep the updates coming when you can.God bless you always 🙏 😊
Wow, she sounds very funny (and tough). I named mine Terry, never thought of dirty hairy 🤣. No teeth in mine, just loads of hair, and other nasty gunk
I just said a prayer for you, and will continue to do so. Take care of yourself.
Thank you, God bless
Hi young man, the only advice I can give you is ... Never let go of His hand. He will never leave your side. Even if everything looks dim and dark. He will always be there for you and with you. I love your buddy! With love from South Africa ❤
Yes he is, absolutely correct! God is good. Hope all is well with you!
Hang in there! You can do this! I have a relatively rare neurological disease CROS/RSD that causes pain 24/7. I’ve had this since birth and honestly don’t know what it would feel like not to hurt. I’m not complaining. I’ve had an incredibly rich life. But one thing I can honestly say that helps with pain is to keep your mind busy. Take up a hobby, don’t just sit and stare at the TV. I also have a service/medical alert dog. He’s a 7 pound chihuahua - nope, not all service dogs are big dogs. I can honestly say that he’s saved my life in 2 different ways. First by performing the job that he’s trained for. Secondly, and just as important, by being my constant companion. Lean on Bowser. He’ll never tell anyone your secrets and how many times he’s comforted you. I’ve been watching your videos since the first one and praying for you. Be gentle with yourself. Healing takes time and energy. Sending gentle hugs and prayers.
Wow, that sounds frustrating. I agree with a busy mind, problem is mine doesn't work the same post all the anesthesia. Focus, memory, etc.. it's a long process to get "better" for sure. Wish I could speed up that time. Thanks for writing, I much appreciate it. God bless!
From what I understand, teratomas don’t regrow. I’d bet your lung growth is scar tissue. There should be some sort of lung therapy to strengthen your lungs. As far as pain, once nerves are injured (i.e. surgery) it takes at least a year to heal. No doubt, better days are ahead soon. I’m not a doctor, but I do lots of research. Keep us updated, I’ve been waiting for a video since I binge watched your channel. Thank you and take care!
They definitely can, unfortunately. Depends if any was left, if it's a mature or immature tumor, and offer factors. Praying it's scar tissue♡ 🙏
@@shellcshells2902 I too hope so.... But at the same time, heavy dense scar tissue is common with injury for me. So it's likely that scar tissue could affect lung capacity, I'll take that over tumor growth (I think), but maybe will never have that capacity back. Hard to say as of now. Thanks for your insight
They usually don't, is what I've understood.... But they could. And at the same time.... This whole story, I've broken the books, the statistics and norms this entire time. No reason to think I'll suddenly fall in line with what's expected or "normal" 😅
I found your channel a couple of days ago and binge watched your teratoma videos. You certainly have been through the wringer!
These past few years, I have been diagnosed with 3 autoimmune diseases , so I can relate to how your life has been impacted. I do agree with you that we have to have faith in God and trust His divine plan. The Bible says all things work together for the good for thise who love the Lord and are called according to His purpose. God bless you in your recovery!
Thanks for sharing! Sounds as if we've both had a heck of a time. But yes indeed, his plans are so far above our simple in the moment understanding. Stay strong
You're a miracle! I'm so sorry you're still in pain. I got you on my prayer list. 🙏 I done had 3 surgeries just this year. 41 with cataracts surgers (2), gallbladder surgery oct 10. Now I'm waiting for Nov 30 to see my surgeon for my 4th surgery, a gastric pacemaker. So please pray for me. I'm really nervous about having something foreign in me. But I know God's got me! 🙏 ❤🫂 praying for your wife and family, too.
Love from Jackson MS
Thank you! You're in God's hands and will be fine! I had no idea how much foreign stuff they had to use to stitch me up with, like re-creating the sac around my heart because mine was cut to shreds, and the 8 screws and titanium plate!
Didn't know half of it until I was told! Best of luck, God bless you!!!! ♥️
@@Teratoma-T Thank you! That was a scary surgery you had. God is good! You are a miracle. Always will pray for you and your family! Pray things get better for you. 🙏
@@vbrandon1858 thank you, God IS Good for sure!!!!
I had triple bypass surgery two years ago and I still have some pain, especially when I do certain things. The nerves take a long time to heal. Six months before my heart surgery I had a cancer on left lung and had surgery to remove my upper lobe. It's not fun. But I'm doing ok.have a second chance at life. I'm glad you shared your story.
Thanks for sharing yours as well! Glad you're past that, and agree on nerves taking long time (seems like forever). God bless
You are so handsome without all the tubes and hoses.
God bless you and your wonderful family.
They're certainly not a good look!
Continue to be strong. It will all work out.💪💪
Amen to that..... Just a waiting game (I hate those)
Just a side note as I'm watching this, CT scans are very high in radiation and not the best of resolution. MRI's have zero radiation and offer a higher resolution. I refuse CT scans less an emergency situation. I've had too many already and radiation exposure is cumulative. MRI's are more expensive and take more time, thusly why they are not ordered first, and insurance companies don't like to pay for them, so out of pocket is higher. It's about money, not your long term health.
On another note, having a long term or chronic illness is life changing. Chronic pain is a cruel task master and wanting to go back to normal is completely natural. What you underwent was to the extreme, it changed you physically and mentally in a very short period of time without time to even process. Yet, you faced it all like a complete champion. Even the bravest of warriors will often walk off the battlefield needing time, sometimes the rest of their days, to process and recover.
I pray that day by day you get stronger, your wounds heal, your pain reduces and your journey through this storm will bear good fruit, that you did not labor in vain. I ask this in Jesus Name, Amen.
Wonderfully said. Thank you. Yes, I've been wondering that. So far, CTs with contrast half a dozen times since late Jan. X-rays on chest Every. Single. Morning., for a months time plus at least 2 dozen times at other visits. I'm really wondering how much radiation I've had just this year, and what could come of that long term
@@Teratoma-T A docimeter (sp?) a device you wear to measure the amount of radiation exposure. Would be of no consequence at this time. It won't measure how much you've already recieved. Your doctors will most likely brush this under the table, mind you they flee the room and are not there holding your hand during CT scans. Regular x-rays are not as much of a risk, but with that said, a daily dose can't be good for you. If they've left metal in your body from the surgery, you won't be able to safely have an MRI. So if you have metal within, an MRI is off the table. Don't allow doctors to gaslight you. Taking a daily look isn't going to change a thing. I would put my foot down and limit CT's to once a year or less and x-rays to less than once a month. Only you know what they are looking for and I'm not your doctor or you.
Eating or taking anti-oxidants is a good plan. They will also help with inflammation. Certain vitamins are also useful. I take a D3 daily as I have to avoid long or prolonged sun exposure and D3 is also a mood stabilizer amongst other benefits. Eating garlic or taking oderless garlic and onions are excellent for reducing inflammation and are natural anti-oxidants. Vitamin E is good for your lungs, just be cautious as too much is a bad thing. All of the above will also mitigate your radiation exposure effects. Only Iodine tablets will prevent any high levels of radiation from seeping into your bones and I know very little about the risks vs benefits of taking it. I'd guess it would be worth it if I had an inkling to live after a nuclear war or something. I don't.
I believe vitamin E may be a natural blood thinner, so any bleeding risk may have to be weighed against benefits. Be cautious about seeking holistic treatment, some are nothing but charlatans. Yet, God did create the herbs of the fields for mans use and natural therapies are there for us, as well as the knowledge and skill of gifted doctors of medicine. You wouldn't have survived without your amazing and brave surgeon.
I hope this was helpful. May God be with you as you walk the path to recovery. Please don't get discouraged. You've already won the race, you just haven't seen the finish line as yet.
@@coleengoodell7523 wow, very well said, very thorough. Thank you so much! That's been in the back of my mind, but again, too focused on survival and living to let that be front and center. Very valid points that I'm now considering though! I have a big titanium plate and screws, fortunately that's in all essence a non magnetic metal, so should be good to at least ask.
You have shown how someone gets dealt unexpected circumstances and have had your faith and courage challenged to the total limit and gets through it…somehow, someway. Your openness is so needed!!!! 🙏
Bowser looks like an empathetic soul. Quiet company.
I’ve watched all your videos but this is my first comment.
Your hospital staff were incredible.
Your family is so brave. Your daughter is amazing.
Have your hiking buddies come to visit? It can be very difficult for guys to witness pain.
I hope you and your family can go to the lake you showed at the beginning of this video and winter is over soon.
God bless you and them.
He certainly is! Howbwe came across him was a crazy story in itself. Never, ever did I think I'd have a reptile, even though I always wanted a "lizard of some kind" because I thought they were funny. Yes, this is a lake my wife and I often sit on the banks and fish (or try to! 😂), and this was some footage I captured in the past few weeks, trying to find a relaxing hobby (nature photography seems to give me a much needed spark). The hospital staff for the most part really were great. Thank you so much for watching, and leaving a comment! It's so nice to chat with everyone!
On a scale of surgeries, you had 1 of the most grueling, taxing & dicey ones; you're a lucky man❣️ I have no doubts there were other hands 🙏 at play. As I have said, I'm a grieving (but getting better) Daddy's Girl💔 & I'm so SO thankful you are around for your family, especially your daughter.
I know the "why's" they did what they did but wanted to offer this; Be your own Advocate always. Bcuz of your memory of waking being so clear, any time you ever have surgery again, demand to speak w/the Anesthesiologist b4. Let them know what happened. Every body is different & we all react differently. As a personal favor, may I ask that you do your breathing machine (plastic little s**t) as you're supposed to every day🙏⁉️ Lastly, give yourself grace...i think this 🌎 is a better place w/you in it✌️💕🇺🇸🇨🇱
You are as deserving❣️
Kudos on being so open.
P.S. Did you get your brownie ever😉⁉️
Very wise words. Yes, I will MOST DEFINITELY "demand" to never wake on that again. They were very aware of this for my 3rd procedure as I was a total mess thinking about it. Being your own advocate is very important.
Loss is definitely hard, sometimes seemingly forever. Remember that it's ok to be ok. I think some people literally feel guilty about feeling ok after experiencing a loss, but it is okay to be okay.
I did get a few hospital brownies as dessert, not that they're very good. But funny thing is, I'm not a brownie person anyway. Needless to say, I was in another world for quite some time.
Thank you for writing, for watching, and for sound advice and encouragement.
God bless
I’m not a praying person - so I’ll just have to wish you the best of all possible things in your life ahead.
You are stronger than you know, and there would be something wrong with you if you DIDN’T have a little PTSD.
See if you can go to the gym for light, targeted workouts - they burn off a lot of anxiety, and you can track your progress in real time.
Watch out for the pain meds. They will do you dirty in what seems like no time at all. You don’t need more trouble.
Be well, keep walking.
Don’t look back.
You may not be, but I ask you to not turn a blind eye to the idea. I pray one day you (and many others) can witness, like I have (more on that later), the pure miracles that God can do.
Thank you for the kind words! Certainly good advice
You truly have been blessed God is intentional and there’s a reason even if the experience wasn’t pleasant most times it never is ! ❤
You did it you fought so hard we saw your pain and prayed for healing
But you look amazing and everyday will get stronger
“ YOU ARE THE STORM”
Focus on healing an new life and one hell of a journey
Peace and love ❤️
I used to have problems when I slept I would become paralyzed & I could think & knew what was going on but couldn’t move a muscle. I’d scream inside but no one could hear me. I felt like I couldn’t breathe. It finally stopped happening but left me with a terrible fear , panic, ptsd. I went to therapy. It has gotten better so I know you will get through this. I just wanted you to know I can at least relate to that suffocating feeling. It’s horrible. I’m rooting for you. You got this friend. 😊
Sounds terrifying... The mind is incredibly powerful. Glad you've overcome that nightmare
I had episodes of “sleep paralysis”. It is terrifying.
Thank you for this update. I wish you continued healing. Bowser is a cutie. Pets can be a great comfort and stress reliever. ❤
Thank you! Yes they can be, Especially him! He doesn't so much as make a peep. Loves cuddling (since he's cold blooded), and is even more lazy than me on my worst day, lol 😆. Thank you for watching!
Lovely to see you. Dont be too hard on yourself Hun,it takes a long time to recover and recuperate. My husband is still recovering nearly 1.5 years later. Like you he is going to work now,but he needs to take days off at times. I love the way you are getting your story out there,so people from around the world can watch and learn. I love your little buddy hanging out with you. Sending love and blessings to you and your family. Your new friend from Sydney Australia 🇦🇺 ❤
Thank you so much! I'm glad to hear it's not just me. I've always been a bit of a workaholic, so I feel guilty in ways to feel like I need a break, or a day off, etc..
Praying and rooting for you!! ❤🙏 You got this!!!! And love your little buddy on your chest 🦎❤️
Thank you very much. Lol yes, Bowser is pretty cool if I say so myself
🙏 I have been praying for you. May the Lord continue to bless you and your family.Amen
I am sorry you are going through this…just know I am praying for complete healing!
Thank you. I appreciate that and will reciprocate
Hello there, from little ol’ New Zealand 🇳🇿
Thanks for sharing your story. I’ve had 2 spinal fusion surgeries, so can relate to some parts of your journey. Same same but different is what us Kiwis say 😂
Love your beardie ❤
I’ve got a Blue tongue skink and an Eastern water dragon 😊
Very cool! The water dragon looks like the beardies cousin, although it says they don't have relation. Odd. Im assuming he has a personality of sorts like beardies do?
They're so attentive and aware, and the eyesight is incredible. He sees everything lol.
Hope all is well in New Zealand! Looks like a beautiful place!
So proud of you, Tyler! God is using you in a big way! Keep pushing through! ❤ Love you Ty! From your best sister in law 😂
Mmmhmmmm... Where's the other one at??? Guess you get the crown
@@Teratoma-T you know I'm the best! I'll bring you a "Claire" 🤣
Please keep us updated on how you are getting along. I’ve seen your videos and the horrendous amount of pain you’ve gone through. Praying that no surgery is needed anytime in the future. Love Bowser. ❤🙏
Thank you!
Well said. Thank you. I just posted a similar video on my channel. “Let’s get real”. I just listened to it again today because I was feeling like maybe I shared too much. Now hearing you speak to these issues in a similar way makes me feel better so thank you.
Your not alone we are all ❤praying for you and your family
Wow! Your words painted exactly what I was going through and wanted to say about my cancer two years but couldn’t articulate it as clearly as you have today . You’re right about the PTSD. I cried watching your videos because it brought back memories of those painful months and what you were going through and still going through it. To us on this incredible journey. - hello Bowser !
I'm happy to hear you're on the up end. This year has flown by but some of these memories, feelings, they hit you so hard like it's happening right now. Sometimes I just have to let myself have a little "episode" to move past it. Thank you so much for sharing and watching. God bless
@@Teratoma-Tmy family calls them Moments.......and thru life we all have them....my husband had what they call
Pump Head.... after being on the heart bypass machine.... during bypass surgery...he was delusional and acted crazy...they had to re-intubate him for about 5 days...had his lungs drained about 3 times and had 10 unite's of blood products....we were very surprised that he got to come home after Two weeks in ICU.. praying for you..🙏
I am keeping you in my prayers,that was an absolutely horrible experience for you to go through.I was in a house fire we tried to put it out and I got lung damage,went through a lot of the things you did.Hospitalized 7 times in 6 months for weeks at a time,your videos brought back a lot of the feelings I had when I was going through it.I still worry from time to time about having to go through something like thst again,now I am afraid of hospitals,I was stuck and had so many tubes that now I cant hardly get my blood pressure taken without wanting to rip it off.I know God holds our futures and he has a plan for us but when you go through an awful experience of almost dying it changes you.We can just take it one day at a time,take care and God Bless you and your family.
So sorry to hear that. That's terrible.
I can totally relate to the anxiety at the docs. Just the thought of some things is enough to make me very uncomfortable. Still nightmares almost every night. It's a real thing and seemingly impossible for someone who doesn't know to understand. Thank you for taking the time to write. God bless and yes, we'll get there.... One day at a time
Greetings from Vermont. So wonderful to see you at home. I am a firm believer that we heal so much better in familiar surroundings. I've been keeping you in my prayers and wishing you continued healing. The Lord does amazing things, we are Blessed to witness His Grace! 🙏
Thank you very much, God bless you
Thank you so much for sharing! ❤️🙏 Your journey has been beyond amazing, you're one very blessed man! 🙌 Continued prayers for you and your family, I know it's a long road as you said, but "With God All Things Are Possible"! 🙏🙏 💪
Thank you, and yes, that couldn't be more true. He often brings us greatness from ashes, so I try my best not to let things bring me down too much
So happy to see you at home, looking healthier and happy! The last video that I saw you had just been moved from ICU and were still struggling. Have no idea how I came across your videos, but am happy that I did. No one in my family has had a terratoma, but a close relative had a heart valve replacement about 12 years ago. The recovery was complicated, but it saved his life.Might be something to consider, if your doctor's recommend it. Wish you , your wife and family all the best. Btw Bowser looks like a pretty easy going, chill companion.❤
Thank you for that. Yes, they didn't want to remove more tumor from heart as it would require valve replacement, which wasn't needed. So avoidance from going down that path is what they chose. I appreciate it, as I hope to never have instruments in there again! Lol. And yes, Bowser is very chill, very content (not so little) guy. Perfect pet. He's silent, practically no mess, and eats about $1 worth of veggies (and a few worms or crickets) per week. All he wants is heat, and a place to lay.
So happy to see you looking so well! It’s a marathon not a race. Maybe seek out a trauma therapist. Mine saved me from myself. You and your family are in my prayers. Please keep updating!
Thank you, will do
Hi Buddy, I had a big stroke 5 years ago, I had a craniotomy and brain surgery to patch me up .. I was hemiplegic down my right side … I spent time in icu the fear and complete lack of sleep, rest, drugs and the feeling of helplessness I had and still have today has been a tough thing to get through…. Keep going buddy it gets better it’s just slow, your wife and family are doing great too, they have had to watch you go through this and that’s awful for them ….. from Adrian in England 🏴 x
Thanks for sharing. That sounds terrible. And you're still having side effects of it all today, 5yrs later? Wow. Best wishes to you
Your videos WILL help people facing the same or similar tumors/life-altering surgeries. Thank you, sweetie, for sharing. Sending hugs & lots of love ❤️❤️😻🚀🌷🌼
Thank you very much, I sure hope so. It's a terrible process by itself, and while I know not everyone is the same.... I sure would have enjoyed seeing someone else's experience before mine. Kinda scary going into it totally blind. God bless
You are looking so good after going through so much! PICS and medical PTSD are very real. We see it at our hospital all the time. You are giving exceptional insight.
Yes, I am learning they are very much a very real thing. Never would have thought I'd struggle with either, but here I am
I'm curious though..... Does your hospital have a treatment plan / counselor / referral to a specialist, etc... how do they deal with these?
@@Teratoma-T We have social workers who have a wealth of resources. They will talk through options with the patient and/or family. From what I have been involved in, a psychologist who specializes in PTSD is often recommended. A psychiatrist can also be brought in if the patient feels that medication is needed. And these days, even online therapy is available and gives access to hundreds of specialists. I just wanted you to be reassured that you are not crazy ❤️ it’s medical PTSD and PICS as you mentioned. It is a real thing and I feel like the medical community is finally realizing it more and more.
@@TexasAries4 thank you very much!
I think your a walking miracle wishing you a long healthy life with lots of fun and love 👌👏👏💪🙏 xx
Thank you, you as well!
So happy to see you. I know that was a terrifying experience being on a ventilator & all you went through. This was the scariest experience I’ve ever seen. I so hope you get through the ptsd . The pain . I pray for your strength and recovery. This story inspired me. Thanks for sharing. I will follow you as you continue on this path. Hugs
Thank you very much, I greatly appreciate the kind words and your time
Checking in from Melbourne, Australia. Thank you for sharing your journey, what an eye opener. Well done on bravely enduring this life challenge. Wishing you well on your future - you are helping folks.
Thank you very much! I hope this does help, but one day I want to go a few steps Forward and re-visit the part of hospital I was in (especially ICU) and talk with those who don't have many visitors. I can't imagine going through all that alone
You really went through a lot. God’s blessings are upon you
Indeed, Thank you very much
@Teratoma-T you’re home??!
Yess !! You’re a trooper
This is a miracle
Bless your heart. Jesus will walk with us if we just as. He is our only hope for everything in our life. Stay close to him.
Absolutely
Wow! I watched your whole health story from the camping trip to your return home. You are an amazing human to have the inner strength and courage to get through this. Always look ahead to where you're going and not where you've been, that's how you get through these difficult times. You mentioned you've changed. You will always see life differently with a feeling of gratitude and you will be extremely happy with your life once you have healed completely. Best Wishes!
Well said, thank you kindly for watching!
Me too. 3 years ago a late diagnosis of terminal bone marrow cancer. Luckily, my brother was a genetic match for a transplant. I finished my treatment 6 months ago, but I have had lots of other secondary health issues during my recovery. Please do not push it, even though you want to. And to the extent possible, keep active. I was taught some basic stretching exercises to help get ready for the time I started to get out of bed. Best of luck to you.
Thanks for sharing. Glad you're on what sounds like the right track. Yes, it's a slow and grueling process. And you're right, don't push too hard or it can set you back (I know I have a time or two).
But also true, stopping moving really takes a toll on your body. I was basically recliner bound for a few months, now my legs are very tired compared to before. Same with heart and strength in general. So "relaxing" definitely isn't something you want to do forever lol
@@Teratoma-T we will get there!
So good to see you at home 😃, that’s great. Sending you the best wishes for a continued recovery and good luck and healthy going forward. From Canada 🇨🇦
Thank you!
I've been following your medical journey and I can't imagine what it must be like for you to go through it. It's a huge amount of pressure on your mind I'm sure. The unknowns of the future I'm sure bring stress you'd rather not have. Brother I see you have a very supporting family. This is very important and you're lucky to have it many don't. Take it one day at a time and know that God is always with you.
Amen to that. Yes I am fortunate in many ways, but still struggling very much physically, mentally, etc.. Taking it day by day as you said, yr yes very important. God is good, so very good. Thank you so much for following along. Stay tuned for what I believe are very interesting, enlightening topics to come. Many blessings to you!
I just started watching. I know I am very late to the game. I find your journey very compelling. I stumbled across your videos because I have been recently been diagnosed with bladder cancer. Have gone theu my first surgery and will go thru another in January. It is nothing like what you had to go thru. I hope only the best for you. Thank you for making these videos for us. They have been very helpful in helping me deal with my fears,
Isaiah 41:10. Fear not, for I am with you;
Be not dismayed, for I am your God.
I will strengthen you,
Yes, I will help you,
I will uphold you with My righteous right hand.’
You are so much stronger than you know. The instinct of your body is to perservere and live. Yes times will be hard, but there is always something that could be worse. Hang in there, you'll do better than you'd ever thought you could. Don't be afraid to ask for help. Don't be afraid to ask questions, and stick up for yourself and what you need. And you are NOT alone in this, so many other have these same fights. Ask family / friends for support when needed.
God bless
Good to see you up and about. That was an awful experience. Praying for you
Thank you so very much!
Glad your doing better continue praying for you love your little buddy thank you for sharing your videos
Thank you for watching!
Love from the U.K man, stay positive
Thank you!
Prayers
Thank you
My dad went threw similar thing as you did he had cancer had 4 modules on his lung lost half of his lung he had all the tubes and said he hated every minute of it with tubes etc since then he’s had cancer in his other lung and now his ear I’m glad your recovery is getting there stay strong
He's a trooper. They're awful, but.... I would takeb8 of them simultaneously over the healing and pain from the 13hr Double Clamshell Thoracotomy 😅. Hope he starts getting a much needed break. It's hard to reflect on it in any kind of positive way as you're in the middle of it, but here's to hoping that he gains something valuable from it all. Thanks for writing!
So glad to see you home. Just wanted to put it out there that Tiktok surprisingy has a community of people under the hashtag "teratoma".
Yeah, from my view it looks like they have it as like a "monster inside me" type of thing / crazy weird stuff that trends. Mainly because, hair, eyes, teeth, other body parts, can all be within a Teratoma tumor. So they're rather freaky
So glad your home ! I tell my Pt’s think turtle not rabbit go slow it takes a long time for your body to heal . I pray for continued health and healing , and yes the road ahead will have obstacles . Your stronger then you think !
Thank you, I try reminding myself that often, but admittedly does get frustrating. Esp. since before all this I was "perfectly fine!”. That subconscious thought I know plays a big role in trying to rush and push things
Congratulations for getting to this stage.
Thank you, it's good to be alive!
❤
All the best xx
Thanks for sharing your journey. I have watched the videos and the pain you endured was unbelievable. I had never hear of this tumor before and I am sure that this will go down in the medical journals somewhere. Please keep us updated on your recovery. I do have a question. Have you gone back to full time or limited hours? Sending positive healing vibes your way.
Luckily I am back "full time" but mentally and physically, it's a huge struggle that is absolutely exhausting by the end of day. Fortunately I'm paid for my brain and not my body, so I'm not having to do hard physical labor (those years are well behind me thankfully)
Thanks for the update❤
Thank you all for watching!
That tumor patch was right on your aortic root, attempting to remove it would have compromised a very important heart valve, the tricuspid aortic valve specifically, and there would have not been enough tissue left to patch the aorta. The remaining tumor likely will just form regular scar tissue. As for the mass on your lung in s CT that could be any type of thing
Yes, that's roughly what my surgeon had said. They could have rebuilt the valve, but then need to go in and replace it every 10yr or so (no thanks). They're going to watch it w/new scan at least every 3 months for now. Hoping it's not growing, insignificant "junk". Who knows, I've broken the norms throughout this whole situation, don't want to get my hopes up on this all being nothing of concern just yet.
Thanks for writing, good insight.
Were the doctors able to use any part of your tumor for research? I had a thymoma which is also very rare. You're right about not being able to find any info on mediastinal tumors. I scoured the internet and very little info is available.
It went for pathology and I'm sure they're doing something with it, but I did ask the Surgeon about this; since he claims I'm definitely one of his most complex cases in his long career; and he says the hospital group is no longer funding them doing medical journals so the "coverage" of it would be mainly internal
They could possibly do so, but it would be for scientific stuff like stem cell extraction and producing tissue cultures for production of specialty drugs.
@@christopherleubner6633 from your comments it seems like you are pretty close to this field / type of stuff?
I jokingly asked if I could keep bits of it to keep on the shelf, obviously not going to happen but that's why I'm so thankful I at least had some pictures to see. What a nasty thing it was.
Hi there, did you get the shots in the last 3 years?
None in dozens of years. I've stayed natural, far from that engineered stuff. But.... I worked through the "pandemic" around hundreds who did. I've heard about "shedding", but that's not related to this. This tumor has been slowly growing, for likely my entire life.
My lord, I don't understand your language. My language is Portuguese, as you are currently feeling pain.
By affection does it seem like you're okay?
Yes, still tremendous pain from surgery. They say it's very normal for someone that had to undergo this much trauma in operation to not recover for 1 years. It's been 8 months, and while I am mostly going about my life, I am very limited physically, by pain, and shortness of breath (due to pain and likely a lot of scar tissue). There is a spot on my lung where the tumor may be growing again, but for now we will monitor via body scans as it could be excess scarring