Round II - This time I will KILL IT!

[korn469]

I'm wishing you the best Pekka.

Also btw, I pronounce your screen name as peck-ah is that right?

[Pekka]

korn, it's pronounced like that, yeah.

My daily routine has surely changed. I literally thank the universe and its leaders after I wake up. As in still being alive. Because I just don't know for sure... it might not even be months, it might be weeks, or days. Or today. Or tomorrow. Sure I still go for the YEARS - category in my mind but you never know, so doesn't hurt to be thankful. It's bitter sweet though, it's thankful mixed with bitterness too.....

It also sucks because every time something goes a bit numb by sitting on it, or being in the wrong position or what ever, most liekly medibles, the thing that comes to my mind of course is that "hopefully this is not it.... hopefully I'm not going into paralysis or abotu to have a stroke..." some terrible thoughts... but I'll keep going forward. I have half marathon to run in the summer. Cannot afford paralysis now because I have to do chemo and radiation too for 6 weeks starting Monday so extra paralysis before it would almost ruin my half marathon.

[Pekka]

Well damn it... the treatment did not start today. I had mixed up some dates... today was the chemo drug day, where my nurse told me how to take it and how it works and the looong list of side effects (don't pay too much attention to these was the tip...)... and a long list of other drugs to counter the side effects, establishing the whole chain of drugs. Quite intimidating. And they said this is not much, because I'm young and excluding brain cancer, in excellent shape so my drug list is minimal. Still quite intimidating.

SO it starts Wednesday, next week. So we have a date then. It was quite nice to know that the nurse will be my nurse for the whole journey from the start of chemo/radiation to the end of it. I've always had a different doctor/specialist, never the same for twice. So to have one person consistently with me/on my case is good. Plus she seemed like a rational person.

She put it quite nicely: "Think about future... you had two young kids? Think them... don't let anything dilute your dreams and ideas about the future... think of this as an unexpected bump in the road or detour on your journey". She didn't say this word to word, but this was the exact meaning of it, I kind of liked that.Doctors have not sort of talked this way ever. Like come to my level, give me hope. Even if it was false hope, this is talking to ME as someone with needs and desires and fears. I really liked that

[pchang]

Good to hear. Let me know if you want to start looking at trials now too. You can never start too early. Getting into one can take a bit of lead time.

[notyoueither]

SO it starts Wednesday, next week. So we have a date then. It was quite nice to know that the nurse will be my nurse for the whole journey from the start of chemo/radiation to the end of it. I've always had a different doctor/specialist, never the same for twice. So to have one person consistently with me/on my case is good. Plus she seemed like a rational person.

She put it quite nicely: "Think about future... you had two young kids? Think them... don't let anything dilute your dreams and ideas about the future... think of this as an unexpected bump in the road or detour on your journey". She didn't say this word to word, but this was the exact meaning of it, I kind of liked that.Doctors have not sort of talked this way ever. Like come to my level, give me hope. Even if it was false hope, this is talking to ME as someone with needs and desires and fears. I really liked that

That is awesome! Very glad you have someone like this in your corner for the fight.

[Hauldren Collider]

Good luck Pekka! We're all rooting for you.

[Pekka]

Thanks, it's a good feeling to know lots of people are in my corner and supporting me. That's GOOD thing that comes with cancer. It's good because you often don't have that support and open warm stuff, and now that you do, you can totally take advantage of it and focus on that, not all the negative stuff.

And together we will be even stronger after we kick this cancer back to its cave once more.

Also, I read few articles that had studied the drug I will be getting... it said that combined with THC, it will be even better.. I mean it will be a better drug to kill the cancer cells... not to mention THC kills cancer cells and alleviates possible side effects of the chemo drug.

So? I'm totally thinking chemo is a good idea!!!

I think it is irresponsible for our doctors to disregard such recent scientific studies... but hey, we'll keep together and figure it out as we go. We can later tell the doctors how we did it.

It is strange my friends... My general feeling and status is just so much better now. I'm happy. Weird but true... You can see it in my face, my body language, the way I talk.. everything. Especially if you knew me before. The best part is I know exactly how to keep this up. Not health necessarily, but the status quo if my body stays somewhat intact. I'm no more thinking what I want is to be done with my body, but how body fights. I'm not worried what they're going to do, I'm thinking my moves rather. For what they're gonna do, I'll react for sure and follow up my game plan. I'm not worried. Not now. I'm preparing. I've learned things. One of the things I liekd about myself that I've learnt is that I'm extremely calm. The more pressure is put on me, the more relaxed I become. It's not actual relaxation, it's survival thing, but it kicks in. It' slike a drug. I just become stone cold and calm. Evne when facing death, I relax for the reason of finding otu how I can escape this. So I can count on that at least. I've found things that I don't like about myself but I'll be addressing those somewhere else

[pchang]

BBC article says vitamin C injections improves chemo effectiveness. Might be worth asking your docs about it.

[Pekka]

Yeah... I'll ask.

Good news and bad news:

First good ones:
We've finally moved into our newly-built house and we love it. Kids are goign crazy.

they now know more about my tumor and there are lots more clinical trials for it I'm sure.

Bad news:
They've changed the diagnosis ONCE again. Now it is Gliblastoma Gradus IV. I read it myself from the paper, my oncologists did not bother to mention this little fact to me. I'm pissed off. And now - even more scared.... now I've got the boogie monster of brain cancers. I've now descended to the low point of horror levels 1) cancer -> 2) brain cancer - 3) Gliblastoma -> 4) Gradus IV.

Well, this is the most common of all brain cancer's so at least this is most likely the one they'll try to fix first. Also due to its lethality... unfortunately it's REALLY fast. I'm f***ed my friends....

This one will be difficult to bounce back from. It is like this: I'll fight, but I get hit in the head like every two weeks with a piano full of ****, that says "take half away from that prognosis....", we have shaved years off so many times I'm depressed now.

First when I got this I was in shock about the prospect of not growing old. You know, no retirement with my wife and kids. Then I got angry and sad about not seeing my grand kids... then, half a year ago was this double the size crap theydidn't bother to mention until the last minute. I was disappointed, then I was "oh crap, I might not live to see my 50s".

Then this **** happened.... first, suspecting it was Gradus III but with such fast development, "oh crap, I might no tlive to see my 40s).

Now? It's like good luck seeing next Christmas. Let alone Christmas after that, almost impossible.

According to statistics that is, I'll try to beat them for sure. I'm just sick of having to shave off and lower my life expectations so many times to so low.... at least it can't get much worse. Hey, they see weird stuff, I still feel relatively OK so I must be OK. They could be even wrong about the diagnosis.... to me it seems they are screwing things up and then just don't bother talking to me about it.

[Pekka]

Relatively OK... I'm emotionally tortured and beaten... and tired all the time. And stressed. I should avoid all those things... but I can't just sleep all the time and I don't want to. I'm afraid to be with my kids while my wife is at work because if I have a seizure, they don't know what to do, it'll be scary for them and I might not survive such seizure anymore. That really stresses me out a lot.

[Aeson]

Good to hear you're in your new house. I hope you get time and some peace of mind to enjoy it with your family

If it's not too much to ask, how about some pics?

[Kidlicious]

**** those statistics Pekka. You are going to live.

[dannubis]

Monsieur Pekka, you are in my toughts. I sincerely hope this will turn out all right for you and your family.

[notyoueither]

Fight hard, Pekka! If anyone can beat it, you can.

[Nikolai]

Relatively OK... I'm emotionally tortured and beaten... and tired all the time. And stressed. I should avoid all those things... but I can't just sleep all the time and I don't want to. I'm afraid to be with my kids while my wife is at work because if I have a seizure, they don't know what to do, it'll be scary for them and I might not survive such seizure anymore. That really stresses me out a lot.

I feel you. The possibility of letting your kids see that must be terrifying, I can barely imagine. I think it is a good idea to be two adults present at any time, so the kids don't experience that. Do you have friends of family who could take on themselves to be there when your wife must outdoors? Also, if you don't mind me saying, try to make some good memories with them now when you can. They will need it if you get worse. My dad is not dead, but when he went loco and basically became that to much of my family, me included, the good memories of old days was what made me get through it.