Round II - This time I will KILL IT!

[Nikolai]

This is too darn sad to read Pekka. Hope you find a way to reach 40.

[notyoueither]

Those aren't great numbers, but you have a great attitude, Pekka. If anyone can make it, it's you.

[Pekka]

The numbers are absolutely horrible and depressing - and I'm a number's guy too. I just got used to the old brain cancer too, with it the prognosis was like... 5 to 10 years, it was very passive too, so this is very recent for me. Found out about it just before Christmas, and just some months ago that I might not see next one, if statistics apply. Well, just have to prove them wrong I guess.

Actually I came here to say I'm doing OK, physically, mentally struggling but getting better, it's those damn hospital visits that sets me back mentally, the lack of empathy and hope they present is just so damn obvious and tangible. I need fighters in my team. I strongly believe I will live longer than this year.

Yesterday I was a bit depressed (it comes and it goes) but I just felt how great my life is. I have everything I ever wanted. Everything. A great beautiful house that we built (dream house for us), two beautiful children, a wife (we're getting along better now..), enough money to live (for now), so no financial problems... only worry is the health issue. But that is it. People get these death sentences all the time, it's not like it is the truth. They just know that in most cases this is what usually happens. It is still not the truth of the matter. I don't think I am in a denial because I was in a denial, anger etc phases a long time ago when my cancer was passive (this started in 2009). So I'm actually fairly experienced with this issue and dealing with it. Of course this new thing is a whole other ball game but what I take from it is that it's the final boss, and I have been challenged and I'm up to the fight, ready to battle. Well not ready, but it's not liek you can get "ready" for these things anyway. Do I have regrets? Few, I know I could have done some things better to prepare myself and I swore earlier that I would but never got around to it but at the same time it is this worrying that sets people back. What I need is a relaxed mind, low blood pressure, try to be in a zone once I find it and just go from there. So regrets. One more thing: to battle cancer is an individual sport in a sense that there's no one way to do it, no one truth. So I jut have to be brave to listen to myself and follow up. It's actually very difficult... but I know I can do it. The last regret you don't want is "Oh I wish I would have... ". Like yeah I want to eat pizza and get drunk all the time now but I don't. That would only accelerate the growth of the cancer. And yeah if I get a fever (even low) I have to go to the ward now but I'll make damn sure my wife will bring me food so I don't have to eat the hospital poison food, which is the cheapest, most additive including, low nutrition, high on sugar type of stuff. I think this is why many get bad results, and they get depressed and recover from their beds. I don't blame them, this is very hard, easily the hardest thing ever for me. None of them are quitters. It's just what people think is best, for example I think many people genuinely think that being in a bed is the best way to recover - to not make your body work too much. I bet there is some truth to it because too much is too much but I can't do that. I have to exercise, I have to keep eating no sugar, no additives, no processed foods, lots of veggies, some meat (no to low on red meats), weigh myself every day, check out my body fat, blood sugar... I know cynics thinks "well that didn't help" after I'm gone but it's how I do it. It's my way. It also keeps some of my stress away.

And yes, I do drink beer. And I keep making future dates, things to be done, soon and far away. I'm telling myself this is not the end of me. The end of me will be when the time comes. Hey it might be today, or tomorrow, from anything. It might be in 5 years, or 10 years. I just don't know. I will die, we all will die, we know this. I just know what is likely to kill me. And that's just likely. So at least I can fight it. How do you fight a truck smashing your car on a free way? you don't. I have a shot at realising I have to live right now and the more I live, the more it adds to my quality and quantity of life. So in a sense, I'm sort of fortunate as well, yes? We all have desperate moments, and the time will come when we realise we're going to die and we'll have to think about it, we just push it until "OK so now we REALLY have to think about it". I've thought about it, extensively, and my conclusion is that it'll come, so don't worry about it. It's the time in between sometimes that makes it sad, like for my friends, obviously family, they're the ones this really hits. And this is the torturous part for me because this is what I worry about. I keep thinking about (when depressed) how my children will be sad about losign their father so early. It is their sadness that brings me sadness and breaks my heart. Then again, they will get over it, lots of children lose one parent (or both!) too early. It is the unknown that often troubles us, and so it is for me as well. Would it make a difference? I know my wife is a great mother and our families are very supportive, and then as far as my kids and future, they will have all the opportunities they need. For this I just have to place my trust in God, universe and everything that things are going to be OK for them. I was not able to set money aside for them (I planned to do so but time is getting short and my earning abilities are slim to none now), but the best I can do si add to my quantity and quality of life for them as well so I'm not chasing money. I realise they need me, not money. They need as much normalcy as possible, not stressed out dad who is desperately trying to make a quick buck while sick.

Plus I have few aces up my sleave still... You know like life is a story, or everything can be a story, even in bad situations there are always at least one positive twist at some point. I've had none so far, so even statistically, to make this a story, there will be a moment of true hope. I have few ideas where they might come from, changing my team is one of the twists. I know only good things can come out of it

[Pekka]

Don't be worried, A sense of desperation in my messages sure exists, but I'm still fully mentally and physically capable. In fact, I should be in worse health right now. In fact, I'm in full working mode as well, I mean health, but I strongly thinkg if I was working 100 %, I'd deteriorate fast. I know I've been bashing our health care system, so let me bring up some good things about it: 1) I get to be home adn my compensation has been adequate (then again I'm a high earner so it is a percentage of that, since you pay massive taxes beforehand for cases like this) and it's been smooth for me, 2) radiation therapy was very high tech (stereotactic) and they were good (don't know if it helped but they were good), so taht was state of art and it costed me like 8 euros per visit, so that was practically free, and I got practically free taxi ride from home door to the radiation place daily, can't complain!!, 3) drugs practically free, I'm getting lost of very expensive drugs but it's all covered, I pay like 3 euros for drugs that would cost me 600 euros, and if in a single year I pay more than 500 euros (or something), the rest is then free, so no financial issues there either, adn the drugs themselves are also state of art or what would be given in any other place, 4) blood sample monitoring is smooth and can be taken in a lab 1 mile away from our new house, so that's a nice walking distance, in fact about to take it in 15 minutes... a nice coffee shop/restaurant on the way so I'll stop for a coffee/salad afterwards.

So there's lots of good things. I'd go as far as to say that when it comes to technical things, it's really really good. When it comes to individuals, humans and humane interaction, it's REALLY bad. Service absolutely SUCKS but otherwise it's really good. Then again, I want service int erms of this is my life, I want to know what I can do, help me. I don't want to surrender to the process where peopel become a statistic or are treated as one. I want to make a difference for myself and others in teh same predicament. If nothing else, then at least make it known that they have to step up.

Like today (came back from blood test), excellent wheather, about to go and continue build the sauna soon.. TOmorrow I'll go see my mom again, it's been great, little things... seeing your family more, goign to see TWO buddies of mine on Friday, friends coming over on Saturday... just great times... Monday we'll be having an Easter party and people coming over, celebrating my son's second b-day at the same time. What's not to love?

[molly bloom]

... Monday we'll be having an Easter party and people coming over, celebrating my son's second b-day at the same time. What's not to love?

Pekka, I can't say I'll pray for you, as that would be meaningless. However, you're in my thoughts, now and over Easter. In a good way, I should point out...

Loved this news from Finland :

A nipple, shapely buttocks and a muscular, moustachioed man smoking a cigarette – a new set of three stamps, to be issued in Finland in September, are among the most daring ever seen in the philatelic world. The images are by Tom of Finland, the legendary artist who was born in south-west Finland in 1920, and died in 1991. He created an archive of erotica with a distinct aesthetic – vast-shouldered men in leather, denim and knee-high boots – that is said to have influenced figures including Robert Mapplethorpe, Freddie Mercury and the Village People.

http://www.theguardian.com/artanddesign/shortcuts/2014/apr/15/homoerotic-artist-tom-of-finland-official-stamp-approval

Three cheers for Finland !!!!!!

[notyoueither]

I have a shot at realising I have to live right now and the more I live, the more it adds to my quality and quantity of life.

Words to live by.

I know my wife is a great mother and our families are very supportive, and then as far as my kids and future, they will have all the opportunities they need. For this I just have to place my trust in God, universe and everything that things are going to be OK for them. I was not able to set money aside for them (I planned to do so but time is getting short and my earning abilities are slim to none now), but the best I can do si add to my quantity and quality of life for them as well so I'm not chasing money. I realise they need me, not money. They need as much normalcy as possible, not stressed out dad who is desperately trying to make a quick buck while sick.

Great to hear!

Plus I have few aces up my sleave still... You know like life is a story, or everything can be a story, even in bad situations there are always at least one positive twist at some point. I've had none so far, so even statistically, to make this a story, there will be a moment of true hope. I have few ideas where they might come from, changing my team is one of the twists. I know only good things can come out of it

Cheers, buddy!

[Sava]

Pekka

[notyoueither]

Don't be worried, A sense of desperation in my messages sure exists, but I'm still fully mentally and physically capable. In fact, I should be in worse health right now. In fact, I'm in full working mode as well, I mean health, but I strongly thinkg if I was working 100 %, I'd deteriorate fast. I know I've been bashing our health care system, so let me bring up some good things about it: 1) I get to be home adn my compensation has been adequate (then again I'm a high earner so it is a percentage of that, since you pay massive taxes beforehand for cases like this) and it's been smooth for me, 2) radiation therapy was very high tech (stereotactic) and they were good (don't know if it helped but they were good), so taht was state of art and it costed me like 8 euros per visit, so that was practically free, and I got practically free taxi ride from home door to the radiation place daily, can't complain!!, 3) drugs practically free, I'm getting lost of very expensive drugs but it's all covered, I pay like 3 euros for drugs that would cost me 600 euros, and if in a single year I pay more than 500 euros (or something), the rest is then free, so no financial issues there either, adn the drugs themselves are also state of art or what would be given in any other place, 4) blood sample monitoring is smooth and can be taken in a lab 1 mile away from our new house, so that's a nice walking distance, in fact about to take it in 15 minutes... a nice coffee shop/restaurant on the way so I'll stop for a coffee/salad afterwards.

So there's lots of good things. I'd go as far as to say that when it comes to technical things, it's really really good. When it comes to individuals, humans and humane interaction, it's REALLY bad. Service absolutely SUCKS but otherwise it's really good. Then again, I want service int erms of this is my life, I want to know what I can do, help me. I don't want to surrender to the process where peopel become a statistic or are treated as one. I want to make a difference for myself and others in teh same predicament. If nothing else, then at least make it known that they have to step up.

Like today (came back from blood test), excellent wheather, about to go and continue build the sauna soon.. TOmorrow I'll go see my mom again, it's been great, little things... seeing your family more, goign to see TWO buddies of mine on Friday, friends coming over on Saturday... just great times... Monday we'll be having an Easter party and people coming over, celebrating my son's second b-day at the same time. What's not to love?

I would think that finding lots to love is crucial to beating the odds. Keep these spirits up and you have a better shot than most people.

[Pekka]

Thanks for everyone's kind words

I keep posting a lot here but it also helps plus it's proof of life.. the fact is, I'm doing pretty great now, I have new plans to extend my longevity, we'll see how that works. Also found a great study that is local, emailed them but they are also in a pre-clinical stage and have no funding so that's a no go for n amount of years (I'd say 5 since they have to apply for funding...), however, the findings of the study were sort of known in the world and the treatment IS available in the US using the exact logic, except they've got experience with it + a wide range of more of that stuff. SO they kind of validated them, so all I now have to do is get **** loads of money (it's out of my reach right now). Breaking Bad time? I don't know. I have but one rule, and it is Do not Hurt others. So no breaking bad time in reality but I've got to score some serious cash, but even that is a good thing, I know that there are things to be done, just have to find a way. Or lend the money. See if it works and if it does, let it be a positive no-money problem.

I honestly think that the reason I'm still in good shape is because of the many things I'm doing daily to keep my fitness and killing cancer cells with aggressive stuff I do (exercise, nutrition, supplements, THC, yoga, all that stuff). At least I'd be doing worse if I didn't do all this stuff, I would feel worse. I don't know, maybe I'd be dead already. So... this is working for me now, have to keep doing it.

Today is a good day, it's going to be sunny yet again (the rest of the week will be), I go shopping for myself (stuff that I actually need) and then I'll go to my mom's place for a dinner and get back home to the family for the night. It'll be awesome. Then Easter time soon and the extended family and friends will be here. Exciting, like the rest of the week My sick leave is now until the end of July, so I've got time to do my things in relative peace. Relative because you'd think you've got time, well, we also have 2 kids so it's not like I have the house to myself, it is a lot of work with one 3 and one 2 year old... both active and LOUD! So no, i have not seen a 1000 movies, read 100 books like I planned. But that's just fine, the kids need normal time at home.

And yes, extra prayers won't hurt, I'm getting more into the spiritual side of the world, it does give me some comfort and positive things to think about. It's not religion that has rubbed me the wrong way in the past, mostly some of the things in its organised way and maybe some people, but obviously there's so many people that judging it like that would say more about me than others. My mom is a pastor, so a lot of it is - I think - my own rebellion. But she has really been strong with me during this case and it's clear she would do _anything_ that helps even just a bit, and I trust her 100 % so that counts a lot. I'd say this has brought us much closer and I feel happy about that. She is also the one who has pushed me to find private docs, and found the ones we are going to see. Sometiems I have to soften what the docs have told me because she gets so angry that I'm afraid she's going to go there adn demolish their offices. I like it, after 10 years in the US, she has become a demanding customer, but in a good way, polite but stern way. Like if it isn't working, she will tell you about it (without nagging or whining). So I've got some strong people in my corner and after we have upgraded our medical team, it'll be even better.

Funny thing, my oncologist is in fact the SAME in the private clinic than in the public sector. They are definitely not allowed to discuss about it in the public side. I understand that. It'll be interesting to see what she says once we are paying customers. I think it'll get a whole lot different fast. And even if not, she is positioned as their junior doctor (she is senior at the public side), and on top of her is an army of seniors. But at least she won't have any gag orders. OK! Time to go shopping -->

[SlowwHand]

You're one of the greatest people I've ever known. No matter the time you're allocated,you could get hit by a bus tomorrow, enjoy the small things. Enjoy birds singing and clouds. No one ever knows when it will end.

[dannubis]

Wel, Sloww, that was nicely put.

And of course: Pekka

[pchang]

What is this treatment that is available in the US? If we can figure out who manufactures it, we might be able to petition for compassionate use (either free or at a big discount).

[Pekka]

pchang, what treatment are you referring to? The Novothreapy one?

Anyway, tomorrow starts my new cycle of chemo (triple dosage) so I'm a bit anxious about that... interestingly enough, right now, I'm not afraid. I'm mostly anxious if I get sick from it. I feel good, I feel great in fact.

Easter was nice, lot of people came, great food, lots of fun, and many unexpected people also came (who usually pass or don't show up), so all in all it was great times to be had. One of my cousins, who I certainly like but have never been very close to said he'll come Friday and visit me again and starts to come over more. I really liked that, he's a fun person. It would go into the category of things that I could have done better (be closer to him). So that's a check!

I'm going to my mom's again today, so another adventure planned for today

I've got to say, I've solved one of my personal mysteries that troubled me for years. Ever since first diagnosed, I was unable to deal with it. I figured that I have to fight, to not give up, and if I sort of accept it, it equals giving up and that I ill die earlier as a results. Sort of logical in a sense but th efeeling itself was strong so I did not dare but keep that position. So then I thought if I'm in a denial and staying in denial is also harmful in long term so where was I? In denial, trying not to give up, not able to accept, I was for sure in constant anger. It was survival.

But now I think differently. I'm accepting this as my battle, that may take my life, but I will not give up, I'm in it to win it. And I will forgive myself if I lose. SO no anger about that, not going to increase the pace of illness by giving up either. In fact, I'm starting to think it's no an illness per se, it is part of me and I just got to keep fight it, like diabetes, I can declare war against it but it probably don't understand my rhetorics anyway. This has resulted into an ability to be between fighting and relaxed state. Kind of like boxers and athletes before their performance, I'm sure they're afraid and scared, but they might take a good nap before entering the ring in a relaxed mind set. To give the best performance. THat's what I'm seeking to do and getting there slowly but surely. I think this will increase my quality and quantity of life. I recommend it to everyone else as well, even if you are not ill. It just means opening up totally and surreneding yourself to life as it comes, removing some of the filters, saying "yes", being truthful to oneself and following your own heart more. I used to follow what I considered rationale, yes it served me well for years, but all of it means nothing when it comes down to this.

One positive more positive thing, I'm decreasing my cortisone intake, so I'm less swollen now. It was to a point where my legs and hands were aching quite a bit and I thought how fat have I gotten but now it's going down fairly fast so I guess I've put on some weight but not THAT much LIke I outgrew one of my pants. They fit again.

edit: minus all the typos.. don't worry, I'm just a lazy writer and my fingers are still in fat mode.

[pchang]

The treatment you mentioned in post #327

[Pekka]

Umm I'll have to re-check it...

in any case, today I had my triple dosage of chemo and no nausea or any other noticeable side effects, at least not today. So there is a good chance I will be avoiding nausea altogether

I was so nervous today but now I feel great