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The fight - Second round is on...
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The fight - Second round is on...

 
The fight - Second round is on...

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Page By: PAROFES

Created/Edited: Dec 15, 2013 / Feb 26, 2014

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Well, not seeking points on this, just updating the news to you guys since most of you know the second round is already on. I'm afraid to say I lost the first one. Had no remission which was the intention the whole eight months of treatment. But hey, shit happens...So what happens now is I'll stop to update the first article (it got too big anyway...),and just as the first one, I'll update the news to you folks with a timeline system, easier this way I guess..is that okay?

So it begins...

To read the first one, please access: The scariest moment of my life

Oh, yeah, again, sorry about an article with no mountains or muntaineering. Trully sorry.

TIMELINE UPDATE - OCT 14, 2013

Yeap, exciting news at last!

Went on a appointment with Dr MC and she told me the best news ever, the bank found me 4 possible donnors, 2 in Brazil and 2 overseas. Isn't that great? They already started testing the first one for the compatibility. Fingers crossed!!!
There are 4, but this is  a very costly process, so they'll test one by one, this can take some time...

All I have to do is to wait for a phone call!

\o/

TIMELINE UPDATE - NOV 13, 2013

The LAST blood test somone...
PLASE ZOOM IN TO SEE NOTES!!
This is when the whole new situation started, with this DAMN blood test.
Please, SP doctors, look at this, this is bad, BAD! And I was hiking with this blood just a couple days before.

 

TIMELINE UPDATE - NOV 17, 2013

Me, closing by the true summit
As sick as I could be, always in last. Photo courtesy by Tacio Philip.
Just got back from a recent trip to reach one more summit on Itatiaia NP, and the task was so, so hard for me I came to the hospital just two days after I got home. (got home at 11th in the afternoon, hospital first light on 13th)

The result is this, and today is my 5th day admitted here:

I had for some time on (probably a couple weeks alredy): Acute sinusitis and pneumonia. (and I didn't know about it)

So, think about that, I was hiking above 8,000ft with acute sinusitis, pneumonia, with only 12.000 of platelets and 5.1 of hemoglobin, my blood was able to carry only a third of the oxigen healthy blood does. So this 2.500m mountain to me was actually a 8.000m peak. Without artificial oxygen use.

Did again myelogram and bone marrow biopsy, and here it is, the devastating news, the cancer is already back, and in a couple days the chemo will start again, a"re-induction", with different compounds, to strike harder the sickness.

Well...I'm too sad now, but ready for the fight.

Wish me luck, I'll need it to survive this ordeal all over again.

Cheers folks

Parofes

Some Images

Me, sucking up platelets.
I needed fast. Got it on the ER of the hospital...Nov 13th.
This chemo is called Mitoxal
The blue stuff...
Lilianne just saw me, shot from 25 minutes ago
Dec 15, 2013. Day number 33 inside the hospital. Half an hour ago.
 

TIMELINE UPDATE - DEC 1st, 2013

That was my birthday
Nurse and technicians, they all say I'm the best patient EVER hehehe
And more nurses
At my birthday
The B-day!!!

Of course I was in much much pain...


 

TIMELINE UPDATE - DEC 15, 2013

Admitted for re-induction chemo: Day 25
The way I look now. Hairless and beardless again...SHIT!
Well...

All of you must be asking "what a hell happened between all this time? I'll tell u right now...chill...
As we had almost sure about the back status of the leukemia for some time on, Dr S and I decided to do another myelogram and bone marrow biopsy to be sure. A few days after that came the confirmation, I had already 11,6% of blast cells infiltrating my bone marrow (5,1% were already inside), and that's why I was feeling sicker and sicker. The decision was quite obvious, re-induction right away. By this time I was already with frostbites on my toes by fear, not fear of die, but fear of another deadly and painful intestin infection. That was a hell for me...

He told me the drugs would be different, stronger of course, to strike the leukemia with a hard fist. I agree with the idea, to kill or be killed, fuck it. What do I have to lose anyway?

So the whole process was between nov 21 and no 25 (consisted in three sets of chemo: Vepesid, Maxitol (the blue stuff), and my old friend aracityn). All okay, no headaches no nauseas, no vomits, nothing, so I made a few jokes about it, so I was just like an idiot since I know the worst about chemotheraphy is about five days later. 

And the shit came. Killing headaches, like someone was trying to rip out my eyeball literally by hand, and at the same time, this pain, lighter a bit, comes down my cheeck all the way to my jaw, where it hurts more. So eating became a problem too...Just to be clear, all this only on the LEFT side of my face. So the only option was, against my call, heavy drugs to stop or minimize the pain: morphine of course.

So the "pain team" of the hospital came to see me. This is a team that works ONLY with pain and define the course of treatment according to your type of pain. So they gave me again the damn morphine blue bomb, the one I press the button for each dose. I hate that thing, it feels like I am a drug addicit. But what could I do? I was in a great deal of pain...After talking to me for like one hour and looking at some exams, they reached to a conclusion that my problem could a "triplet nerve" (wft???), and that pain could take up to 18 months to go away, of course not with the same force all the time, like fading away...

I was devastated by the news...First thing I thought was "As soon as I get out of here I'll go to Itatiaia NP again and kill myself on Agulhas Negras Peak, like simulate an accident". And after just a couple minutes I stop, and thought again how unfair that would be to Lilianne, to Miriam ( my mother in law), to my systers Gabriela and Ana Paula, and to all of you guys who sent me all good vibes possible and think about me everyday.....Don't get up the chair folks, that crazy idea died in like no time.

Once again my position was to fight for my right to live, and to live with quality. Fuck this stupid pain...I'll deal with it.

Days passed...the pain got lighter....and like a week later it doesn't bother me so much. It is a constant don't get me wrong, but perfect manageable.

Today is my day number 33 inside the hospital, "D plus 20" after chemo, so we expect the bone marrow to wake up soon enough so I can go home next week. That d be great, I didn't get Lilianne her present yet.

Oh, at december 1st I completed 36 years old, inside the hospital, in bed, with killing pains...what a fuck up birthday that was....

So far that's it. Feeling good, hoping to go home soon...unfortunately no mountain any time soon because is already rain season here so it rains pretty much by the hour....

Any news, I'll be back folks.

SO far, 61 days of waiting and nothing about that 4 possible donnors. Figured....   :O(
My country SUCKS big time.



TIMELINE UPDATE - DEC 19, 2013

Hello everyone,

Yep, it doesn't look good for me folks.
There's a drug called granulokine (granulocyte) which stimulates the bone marrow to produce white blood cells even after chemotherapy. I have been given a daily dose for around 21 or 22 days now, and isn't working. My bone marrow doesn't give one finger out the water just to show it's alive, and the current situation is:

D 29 with chemo
D 24 without chemo

It should be up already like five or six days ago, but nothing happens, nothing. 

So Dr S is obviously worried, and we're gonna do a 17th myelogram test, fuckinx needle inside my bone again, to suck out some of this useless juice called bone marrow I have, to see what's going on here...

Depending on the result, I'll have to do a re-re-induction. Fuck me...I don't know how much more of these I can take...too much chemo...just too much...

Today I am in peaces, literally without strength left to even think about this anymore. I'll have some sleep.

Sorry to give u guys such bad news...

Parofes


TIMELINE UPDATE - DEC 20, 2013

Hello everyone,

Impressive how one attitude can practically change the whole day you're about to start. I woke up around 08:20 with the screams of the front patient. We have rooms, doors and all, but he was in a lot of pain (back surgery the day before). So, as I prepare myself to get up, Lilianne walks in the room!!! My eyes started to bright, I was so down the night before and shit, and she came to literally save me from another disaster day. She hugged me and said "I'm here my love..."

Wow...that made my day. I was already fit for anything.

She spent most of the morning with me and after that, work of course, somebody has to work on the family hehehe (Mussarella is alwys hungry hehehe).

So, Dr S came by around noon and he was worried, but talking serious with me and making some jokes sometimes, I know him. That means he is onto something or thinking something good about me and my bone marrow. He gave the exam. Fuck yeah!!! White blood cells made a move last night, just 100 units, buts it shows recovery!!! So, my numbers so far are like this: 

       Date       Hemoglobin       Leukocytes       Platelets           C-Reactive Protein    Day including chemotherapy               Days without chemotherapy
14/12/2013          9,7                      500             33000                         8,41                                  D24                                                     D19
15/12/2013          9,5                      500             20000                         7,33                                  D25                                                     D20
16/12/2013          9,0                      460             54000                         5,16                                  D26                                                     D21                      Platelets transfusion (last one)
17/12/2013          9,0                      500             36000                         5,05                                  D27                                                     D22
18/12/2013          8,6                      500             30000                         5,50                                  D28                                                     D23
19/12/2013          9,5                      600            28000                         5,86                                  D29                                                     D24
20/12/2013                                                                                                                                   D30                                                     D25

Anyway, that little change we see in white blood cells (leukocytes) gave us a damn great hope that the bitch (my bone marrow) is starting to wake up.
So he did what he had to do, ordered the myelogram exam.

By 5:30pm the doctor A came to do it, so I ask her "do you mind if I record this in full HD?" She said: "No, not at all, how do u wanna do it?" ahahahahahahah
Can you guys believe it? I just did my 17º myelogram and with my go pro silver 3, I did a 5' video with the full test so you can see it. Damn! ahahahahhaha so happy about that.

So, back to the story, she said to me she saw the chemo I just did, the re-induction, and she said "Boy that is one of the strongest, it kills trolls!. The recuperation from this is like 30 to 35 days". I said REALLY???

Do you guys get it? I not even had to ask the question, she already gave me the good news, so I'm on time, not late, wow...so happy...

To finish for today, I'll leave a video I did to encourage leukemia patients to exercise. I walk miles every day inside my floor...for real, and I did a short video telling that my corridor is only 24 meters long, so I have to go in and back like hundreds of times to reach a great number. Today I walked the impressive mark (remember, I am a leukemia patient, in full aplasia, and you have my blood numbers above as proof!) of 8,28kms (5.14 miles)!

Tomorrow, my goal is at least 9 kms. I raise up a little bit every day hehehe...

Enjoy the video, and as soon as I get to upload the myelogram test video, I'll put it here, be ready for some real walkind dead action! Hell Yeah!. Cheers mates.



TIMELINE UPDATE - DEC 22, 2013

Hello everyone,

40th day inside the hospital, I'm losing here!!!
So, lost my main fun way to spend the day, my "hiking in the corridor", got myself a muscular calf injury, which was going on for some time. But as I was walking more and more, it got really bad. Pain, pain and more pain...damn it...

Anyway, as promissed, I could get the video on youtube of my myelogram exam! Wanna see some cool shit? Hold on the chair heheheh


(the better is your internet connection, better you'll be able to see details, this was filmed in full HD)

This is me!!! hehehehe
Of course, the first two injections are local anesthesia, but it covers only tissue and a thin membrane covering the hip bone or Crest of Ilium, the membrane name is is...is...oh yeah, (working on it). After that, when the medical doctor uses physical force in repetitive movements she is making her way into the bone to get into its center were the bone marrow is, no anesthesia here budy! Suck it up and take it! It doesn't hurt so much even by the look of the size of the needle she uses for the test (and trust me, for bone marrow biopsy, which I did twice already, it's even bigger and thicker!), but it hurts. Anyway, have been on this same page now 17 times. Damn...
After that she makes the punction of the bone marrow itself that looks like blood, the one part of my bone that is broken.

Enjoy the video.



TIMELINE UPDATE - DEC 26, 2013

Hello everyone,

Bad news folks...

The re-induction failed. My bone marrow is now like a castle of cards falling down at the slightest breeze...

I probably don't have much time left. A month or so.
We're gonna try an even stronger set of chemo, a "re-re-induction", to try to reverse the status, but there are no guarantees it will work...

So, I guess this is it. The final line, I'm so close to death now I can even see it, and the funny thing is, I'm not afraid. I feel like I lived a happy, joyful and fulfilling life, for a 36 years old.

The only thing that makes me sad is the fact I won't be able to give Lilianne the life I promissed her. This is it, my only regret...

So...I guess this is it...I don't know when or if I'll log in again in SP due to the power of this new chemo comming on my way...

I wish you all the best, 

Farewell my friends,

Parofes





TIMELINE UPDATE - Jan 13, 2014

Hello everyone,
The dreaded Zavedos. Fear!!!
The dreaded Zavedos. Fear!!!

Wow, time is going by so fast I kinda lost track of it for a while...
Okay, I was a little dramatic when I wrote "I probably don't have much time left. A month or so.". Sorry about that. I wasn't thinking right. Disturbed by the news I guess.
Turns out that I just finished the re-re-induction chemo, again, 5 days set, with some strong chemicals, and one of them, a orange stuff, causes mucosites in all patients, and I already feel my mouth very sensitive, so I'm trying my best not to talk or keep my mouth wet all the time, a fresh water can help a lot. Icecream too.

Magnetic resonance of my Tibia
Magnetic resonance of my Tibia
Today is Day 1 without any chemo, and Day 3 without that toxic orange shit (I got it only in the first 3 days on this set). So far, I'm holding, feeling good, just eating almost nothing.

No headaches, no nothing. Just one vomit at day 1 of chemo (jan 8, 2014), probably because it was my first contact with the strong stuff. But that was it.

Well, my leg got way way south. When I left the hospital it was just a muscle pain, nothing much. But it got bad, really bad, and then it got worse...

So, at day 2 inside the hospital I did a magnetic resonance, which discovered the true nature of the pain.

I have two tumors, one on my thigh and one on my calf muscle, in the Gastrocnemius lateral head area. The second one they even could measure the damn thing: 4,7cms x 1,7 cms x 1,7 cms. Both of them can be called as a secondary cancer caused by the AML itself. Damn, I didn't see that coming...Both are malignant tumors, but the one that made mine and the doctor's hair fall off is the one in the calf muscle.

That is a known complication of the Acute Myeloid Leukemia. But rare. Off course, all they say "it's rare" happens to me. After all, I am a lucky bastard hehehe

So, the course of my treatment doesn't change until we check the results of the action of this chemo I just finished. It can destroy both tumors by itself and get my bone marrow back in track in remission (that's the intention). It can get me back in remission without cause any harm to the tumors, anyway, we have to wait and see...

If the chemo does nothing to the tumors, I'll have to do radiotheraphy as well. And this will be the only change of the treatment whatsoever.

If radiotherapy doesn't work, well, I don't know...

For a couple days here I wasn't able to walk, so much pain...So I was in a wheelchair. I felt so sad...But I don't know if it was the chemo or the meds, I felt better, and now, a week later, I can walk with no pain.

As soon as I get the image of this little SOAB I'll put it here.

Anyway...good to be able to come here and share this. Bad news, but I have hope, always! Hope doesn't die for leukemia hehehehe

I continue listening to music a lot, it cheers me up, and Lilianne come visit me whenever she can, after all, she works very hard. 
Someone has to pay the bills! :P

Wish me luck, I expect to get out in the first week of march, well, I hope...and in Remission of course.

Day admitted: Jan 3, 2014.
11 days inside already. So far, Okay.

Wish me luck folks!

All the best

Parofes






TIMELINE UPDATE - Feb 26, 2014

Hello everyone,

So sorry to bring such terrible news on you guys...The so called tumors were not tumors, they were sacs of a fungal infection caused by the worse enemy I could possibly get at this point: Fusarium spp. It attacks leukemia patients with extreme low white blood cells counts, and it's mortality is of about 75%. Cool ah? The treatment is long, too long...first they started with 14 days of the drug to stop it, now there's gonna be 14 days more.

I begin to think I'll never get out of here...I feel like a criminal doing time.

Today is my day 55, never been inside for so long, and I still have at least 20 more to go. If I live.

One more and the true bad news: The re-re-induction failed...My bone marrow has already 15% of blast cells inside it. So, I don't know...Think it's just a matter of time now...days, weeks, some months...

So, so sorry to tell you guys about it.

My current body weight is just 58,7kg, never been so thin...I feel like a walking dead from the show...(for reference, my regular weight is 77 - 78kg)
My Dr is trying to fix me with a home care so I can be with Lilianne and Mussarela, miss them soooooooo much...I cry pretty much every day, some days, several times...

I wish u guys the best

Parofes



If I go, please remember me by this photo! 1

If I go, please remember me by this photo! 2
If I go, please remember me by this photo! 2
If I go, please remember me by this photo! 3
If I go, please remember me by this photo! 3




Images


Comments


[ Post a Comment ]
Viewing: 1-20 of 53 « PREV 1 2 3 NEXT » 

Liba Kopeckovakeep fighting...

Liba Kopeckova

Voted 10/10

Keep fighting Paulo… mountains are a piece of cake after all the pain you have to go through and suffer. Don't give up, you still have to run up Everest.
Posted Dec 16, 2013 4:57 am

PAROFESRe: keep fighting...

PAROFES

Hasn't voted

Yeah I'll keep doing that Liba, you can be sure about that.
Run up Everest? Impossible, too much traffic heheheh
I rather run up Ojos Del Salado! :P

Cheers my friend
Paulo
Posted Dec 16, 2013 7:16 am

Liba KopeckovaRe: keep fighting...

Liba Kopeckova

Voted 10/10

Ok, let me know and I will go up Ojos Del Salado with you.. Just get better, stay strong, I will be praying for you and will try to send you some energy...
Posted Dec 16, 2013 8:54 am

PAROFESRe: keep fighting...

PAROFES

Hasn't voted

You got yourself a deal.
:O)
Posted Dec 16, 2013 8:56 am

markhallamKeep climbing...

markhallam

Voted 10/10

your Everest. We'll all keep praying for a speedy bone marrow match. I think you'll find Ojos too easy after what you are going through at the moment.
best wishes, Mark
Posted Dec 21, 2013 2:25 pm

PAROFESRe: Keep climbing...

PAROFES

Hasn't voted

I'll tell u Mark, if I pull through this alive and well, I promisse to climb Ojos and the damn Aconcagua too, which I'm against for, a mountain of money...
All the best
Paulo
Posted Dec 22, 2013 7:32 am

markhallamRe: Keep climbing...

markhallam

Voted 10/10

Yup - you better do that too Paulo. You will have looked across at it from the top of Vallecitos a couple of years back - and having seen it dominating the horizon how could you miss it out? You keep these dreams in your head as you do your next few km's up and down that hospital corridor - and a lot are praying and generally exuding positive vibes to help you make the dream come true.
Keep it lit mate
Mark
Posted Dec 22, 2013 10:51 am

PAROFESRe: Keep climbing...

PAROFES

Hasn't voted

I didn't miss hehehe. Not going to Aconcagua is a personal decision based on many factors...
But I did took some photos of it

Look: http://www.summitpost.org/aconcagua-ameghino-and-the-hitch-rider-astronaut/849077/c-697635

Look: http://www.summitpost.org/tupungato-and-aconcagua/808307/c-153722

Look: http://www.summitpost.org/aconcagua-ameghino/796440/c-150197

Hope you like them! ;)

Cheers
Posted Dec 22, 2013 12:40 pm

lsheenYou are an inspiration, my friend!

lsheen

Voted 10/10

Your strength and bravery are fine examples of the best of humanity, Paulo.

I will (as always) keep you in my thoughts and prayers - wishing for a compatible and willing donor, and then a speedy and full recovery for you.

God Bless,

Big Lew
Posted Dec 22, 2013 2:58 pm

PAROFESRe: You are an inspiration, my friend!

PAROFES

Hasn't voted

I don't think I'm as strong as you guys say, I just show a lot of it so people can understand what a leukemia patient has to take on the road...
And the road just completed 2 years now.
Anyway, thanks for the great words Lew...
Happy holidays for you and yours!
Paulo
Posted Dec 22, 2013 3:58 pm

sharperbluethe Math

sharperblue

Hasn't voted

Paulo, you're facing what we all must face, and with a sound mind and humor and dignity and gentleness - all luxuries that most of us will not have when facing our own time; how many of us will envy your courage one day! It means that you walk towards the dark like an adventurer and explorer - not as a broken and witless old shell. Nothing is ever planted to no purpose. Thank You so much for your posts and updates - they will help others when they desperately need to see a light on the path. You are not alone. Most or all of us have known the deaths of friends, and perhaps you do too. If so, then you know that those who remain think of them each and every day, miss them, hear their voices in our heads, and smile at the good times we had with them. Listen up; I'm not a man of faith, but in this I have absolute faith: one day, you will open your eyes again. The universe and everything that is has nothing but time, and time is limitless. With limitless time comes limitless chances, limitless opportunity. Every occurrence, eventually, will happen again, even if it takes ten trillion centuries of stars being born, dying, and new ones being born again from their components. You will walk in the hills again and feel the sunshine on your face on some summit or desert morning again one day. It's just math, my friend. See you then!
Posted Dec 26, 2013 11:48 am

PAROFESRe: the Math

PAROFES

Hasn't voted

Your comment is just beyond comprehension to many many people, but not to me. Trust me, I was too excited to sleep after I read ahahahahha...

Thank u very much! ;)

Parofes
Posted Dec 30, 2013 7:24 am

AlbertoRampiniYour mighty light!

AlbertoRampini

Voted 10/10

My dear Paulo, all of us would have the great light you keep inside yourself, illuminating your way...Nothing is lost! Keep on fighting.
Alberto
Posted Dec 26, 2013 12:18 pm

PAROFESRe: Your mighty light!

PAROFES

Hasn't voted

Still fighting!! To the last mannnnnnnn!!!!

Happy new year Alberto!
Posted Dec 30, 2013 7:28 am

yatsekWith you

yatsek

Hasn't voted

My thoughts and prayers are with you, Paulo.
Best wishes,
Jacek
Posted Dec 26, 2013 12:53 pm

PAROFESRe: With you

PAROFES

Hasn't voted

Positive vibes on my way from all over, this is the BEST!
Thanks man!
Happy new year!
Parofes
Posted Dec 30, 2013 7:29 am

Deltaoperator17Brother

Deltaoperator17

Voted 10/10

Paulo Roberto Felipe Schmidt (Parofes)-

We love you an want you to stay with us here on the earth. We know for certain that we (all of us) are going to die, some on the way to our beloved mountains in vehicles, some will parish on the Mountain, some will pass on when our body is done
(old age) and some will leave us too soon. I appreciate that you have shared this journey with us, I know it has brought you some comfort in doing so.

I love you Brother! I pray that we all meet in a better place than this someday.

Eu te amo irmão! Rezo para que nos encontramos um dia em um elugar melhor que este.

Estevan
Posted Dec 26, 2013 7:20 pm

PAROFESRe: Brother

PAROFES

Hasn't voted

Calm down Estevan, not all is lost, I am still strong enough to kick some ass before I go, hehehe
Wait and see!
Cheers and happy new year!!!
Parofes
Posted Dec 30, 2013 7:30 am

Silvia MazzaniHere...

Silvia Mazzani

Voted 10/10

...you have a lot of friends, Paulo, staying with you, praying for you...Don't give it up!
Silvia
Posted Dec 27, 2013 1:19 pm

PAROFESRe: Here...

PAROFES

Hasn't voted

I won't give up, the war is upon me, and I am a damn good soldier!
Soldier of the mountains!!!
hehehe

All the best Silvia, happy new year!

Parofes
Posted Dec 30, 2013 7:32 am

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