Defying the Odds, yet Losing
Here I recount my battle with cancer,
from near-death experiences to moments of triumph.
From
AlexTestria
28.07.24
11 mins read
Cancer Type »
Rhabdomyosarcoma
Location »
Entire lower body
Survival Odds (General) »
<30% Adults in Stage IIIB
Terminal? »
Yes, again
When? »
2022 - now
Most Recent Update
AlexTestria
18.08.24
2 mins read
I am sitting on a Gunpowder barrel!
Hello everyone,
That last update was a long time ago wasn’t it huh. In the meantime I were on a 5 day vacation with Adelina (8.5/10) and struggled a lot with health at nights.
More about that in detail now!
My current health situation
Most interesting part first. My health currently is like a Gunpowder barrel. Ready to explode any time and somewhat scary, with nothing really you can do.
1. Tumor in my lower pelvic floor is growing despite experimental drugs. Like I said I am TERMINAL now. My death, if no new research is released in the meantime is almost certain medically seen.
2. I’m suffering under obstipation and nausea almost every day now. The tumor is pressing on my colon making it really tight. Just yesterday I was thinking going into hospital therefore. Obstipation ileus can be deadly in 25% of the cases and I cannot be operated anymore… Scary situations every 3rd day…
3. Platelets (blood clotting value) is extremely high. Meaning I could suffer a stroke, heart attack and stuff like that any time. Normally you get drugs against that when you have cancer, but in my case I could bleed internally. Reason why we just take the risk and stay alerted.
4. Anemia: My body is running on half the blood volume a healthy person has. Making me sleepy, weak and very very short of breath.
On Monday I’m getting Iron infused at my doctor to hopefully gain some blood again.
5. Severly underweight: My BMI is about 15. I am in such a calories deficit that I can only think and exercise when I’ve eaten something right before. No fat reserves, no muscle reserves to burn in between meals.
How I feel is different!
Despite all these lacks in my health, I’m pretty much doing okay. Otherwise I couldn’t work on Brickcraft or anything else!
And most important of all I use the time I have on this planet and went on my dream vacation with my fiancè Adelina, alone!
My dream vacation
Oh my god how much I love the Austrian Alps!
I drove 8 hours by car into a 4 star hotel we got to afford with some heavy discounts. 😊 (Thanks my patrons for that by the way!)
There we visited the biggest Ice cave in Europe (42km long). That guided tour started with 700 stair steps upwards (300m uphill) and no breaks! I was soooooooo dead after that, but managed to keep up with the group. Adelina pushed me the last 100 steps upwards, phew!
Then we had a 10 course menu in a restaurant that almost received a Michelin star! With 4 exclusive wines fitting to the menu. The hotel gifted us this experience because they heard of my cancer disease! How awesome and kind is that please!
Another highlight was the “top of Salzburg” a 3029m mountain top. The air is soo thin up there and even though I am short of breath I managed to climb another 200m upwards slowly and reach even better viewing points! I’m soo proud I managed that!
Best saved for last: Back at home I wrote a very detailed 5 star review for the outstanding hotel we stayed in. One day later on mine and Adelinas first year anniversary the hotel director calls me. He heard in the hotel that I have terminal cancer from the barkeeper I talked to and wants to invite me and Adelina as soon as possible back for three nights on the house! He want’s to help and bring back the best vacation I’ve ever had! VERY BIG SHOUTOUT TO Großarler Hof
So instead of me paying for my room, I can invite my family to go on a second trip with me soon. I’m just waiting until I feel better again! 😊
I love you all!
Thanks for being here. I’m sooo grateful of what we achieved together!
If I had a second chance at life, I’d do it the exact same way again!
Special thanks for everyone who donates on Patreon! Without you I couldn’t have had the best vacation in my life!
After these awful months on my death bed, this was a real breath of fresh air!
Thanks sooo much for your support!
Outdated Update
AlexTestria
18.08.24
2 mins read
❤️🩹 Seems like I'll live a while longer!
Hello, everyone
Like I said in the last post, every day is a roller coaster and has challenges on its own.
Right now it seems like the bleeding is getting a bit better every day and that my body can keep up with the blood loss.
I should now gain some more time, with the new medication I got specifically targeting my tumor.
There aren’t that many side effects, so I’ll just make the best out of the extra days I got! 
Thanks for all those kind words I got when I was feeling so bad and it seemed like I was reaching the end of my life.
I’ll let you know if my health is getting worse again or keep on becoming better. ^^
I love my community so much, I love you
Cheers Alex
Outdated Updates
AlexTestria
15.08.24
3 mins read
Uncertainty in the Face of Death And New Options
Hello, everyone
It was my wish to die at home and now I’m finally there.
Everyday is a fight on its own right now and I’m trying to make the best out of it. To create some beautiful and meaningful moments.
Uncertainty
As the title suggest we are not quite sure how I’ll die or exactly when. Today morning it looked like I had only a few days, because my kidneys were bleeding excessively. Now on the evening they are not bleeding anymore, instead my kidneys are failing and making me pain. So it really is a roller coaster of having days left, to weeks left. So much uncertainty!
New Options
My oncologist has given me a new experimental treatment. One that isn’t a chemotherapy nor immunotherapy.
Its a special very experimental inhibitor drug that blocks a very specific protein, that blocks the tumor from requesting new blood veins and hinders its growth.
This should slow the tumor or even reduce it in size, and if I’m lucky gain me some time.
How do I feel?
Some days are very hard for me and other feel easy and refresh my energy. I’m pretty much as ready to die as someone can be. I’m preparing for my death for a long time now. Yesterday I was in bed the entire day and today I walked around pretty much all day long.
My entire family is now by my side and are giving me strength. I’m as accompanied as well one can be.
I’m even working a bit on my art!
We had a professional photo shooting in the hospital park!
It was the biggest wish of my mother to have some nice pictures with me, because she has so few.
My fiancé was so kind to organize a photographer to make a photo shooting with me and my close ones in the hospital park <3
Outdated Updates
AlexTestria
05.08.24
4 mins read
Cancer is back again, and I am very likely going to die
This time the tumor has spread to my small intestine, bones, back, etc. Parts that you cannot remove surgically.
Meaning I am Terminal again and there isn’t a real hope, except a real wonder.
I am already on extremely strong painkillers making my mind fogged all the time.
How make use of such little time?
Well, there is no right nor wrong way of how to use your last moments. To me, this means spending time with my new girlfriend, family, and friends and working a bit on Brickcraft. I know it is pointless working on a resource pack that I will never finish, but my work brings me joy and that’s the only reason I ever need to continue doing what I love. The only important thing is letting your family feel loved as much as possible.
My Mini-Life version
I think I played a full life in mini version. I got a wonderful girlfriend, had some great success in work (for my age), seen some other contries, met wonderful people around the globe and had a loving family. The only thing missing for a fullfilling life are own children and a marriage. Its okay that I don’t make it all. Maybe I just played life on Demo version. Whatever! I enjoyed every second of it!
How can we help you?
It would mean a world to me if this discord got a bit more active. Just talk with me, keep me busy and make me feel a little important. There is no nicer feeling of being cared for.
If you are a @YouTuber/Streamer 
or TikToker
please make a video about Brickcraft and my disease.
Brickcraft is my life’s only real artwork and I want as much people to see it around the globe.
This would mean a world to me! 
Outdated Updates
AlexTestria
28.07.24
2 mins read
Cancer-Free: Celebrating a New Chapter in My Life
Hello everyone,
I have some deeply emotional and uplifting news to share with you today. After a series of recent MRI and CT scans, I received the most encouraging news: the tumor is gone—for now. This is a huge victory in my battle, filling my heart with immense gratitude and hope.
However, this journey hasn’t been without its challenges. My body has undergone significant changes, one of the most noticeable being how my stomach has sunken down to fill my empty pelvic floor. It’s a surreal and disconcerting physical change, a daily reminder of the trials I’ve faced. Managing my digestive system has also become a struggle, with significant difficulties in digestion and obstipation due to my stomas. The discomfort and frustration are real, but I choose not to let this darken my days. 🙂
Despite these hurdles, I’ve been diligently working to strengthen my body through regular muscle training. With only 70% of the blood volume of a typical person, every workout feels like a mountain to climb. It’s challenging, but I’m extremely happy to be able to work out again! I have something incredibly exciting to look forward to: my first vacation with my fiancé to the breathtaking Austrian Alps. The thought of this trip fills me with joy and anticipation. The Alps are my comfort place where I can switch off completely. It’s a real treat to afford this, but one I desperately need after these two years.
Thank you for being part of this journey with me. Your support means more than words can express, and it gives me the strength to face each day with hope and a sense of being cared for.
With all my heart,
AlexTestria