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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!
TIMELINE UPDATE - NOV 13, 2013
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
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.
I needed fast. Got it on the ER of the hospital...Nov 13th.
The blue stuff...
Dec 15, 2013. Day number 33 inside the hospital. Half an hour ago.
TIMELINE UPDATE - DEC 1st, 2013
Nurse and technicians, they all say I'm the best patient EVER hehehe
At my birthday
Of course I was in much much pain...
TIMELINE UPDATE - DEC 15, 2013
The way I look now. Hairless and beardless again...SHIT!
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
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...
TIMELINE UPDATE - DEC 20, 2013
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
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
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,
TIMELINE UPDATE - Jan 13, 2014
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
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
TIMELINE UPDATE - Feb 26, 2014
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
If I go, please remember me by this photo! 2
If I go, please remember me by this photo! 3