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how many more ?

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

how many more xmas ? I asked myself the other night.

As I walked through sydney city looking at xmas display windows, xmas trees really holding both the kids hands very tightly amongst 1000s of other families. I felt like this xmas is extra special for us. i asked myself quietly how many more xmas's with the kids, wife and friends. that includes many here who are friends, thanks for the cards. i see lots of hugs floating around this board these days, real love and care even between cyber friends is so important. the challenging prognosis can have many advantages, in my case one for my is lowering the barriers to being loved that our western life erects.

For one i have kind of done a lazarus ie been away and made a miraculous return. Its kind of an importnt point to make, now all my friends hug me, guys and girls and say " gee you look great" , so on some level the german experiment for me has had some benefits at this point. the kids, and wife love me and miss me. now i am back its as if all the love i missed out on in germany has been saved up and bestowed on me just before xmas. so I am feeling cared for emotionally. I must have looked so bad before i left, but improvement in appearance to friends is consistently commented on. At the street xmas party tonight, A lovely 40 something mum friend and i discussed fixing up a few wrinkles, i said its a great idea if it makes you feel good about yourself. I said I have spent over 100K keeping the body going, a few dollars on the face only seems fair, why not live or die looking good and smiling?

so i am home and on a high and stealing myself from the countless serious issues wanting to disturb my fragile peace of mind.
being in germany for experimental, expensive and for me essential therapies has been worthwhile on many counts.
still no german pet scan result, over a week, but i know prof vogel who does the chemo embolisation said lymph nodes showed some activity, so he treated the liver and lymphs with chemo embolisation. so i know my cea dropped from around 100 approx to 38 with the german treatments, but precisely which therapes did what to what mets i don't know. so diagnostic uncertainty is still a factor in treating the illness no matter what type of therapy you chose.

so for background I had some peritoneal, liver and lung uptake in the august pet, after 12 months rising cea and chose experimental german therapies rather than traditional palliative chemo for my metastatic illness. I am in a strange aware state, and really kind of sad. A wonderful women, Suzan, has passed. so cancer takes another young mother, wife and friend. she was at the german clinic we spent about 8 weeks side by side getting therapies. I don't want to analyse what contributed to her demise here, its the mortality being flagged, because I really loved her in my way. she was so sick on my last weekend, we had lunch. i had the old what do talk about when your really dieing now kind of dilemna. we talked, i helped push her wheel chair from the dining room to the infusion room. she died two hours before her husband and daughter arrived from the states. she was a beautiful, strong loving woman. I am so sad. from her passing to colin's funeral thurday, he was a best good friends father, he passed at 86 and was married 65 years to pat. I hugged pat, she was more worried for me than herself. it was her husbands funeral. it was precious. but the whole death and dieing has been raised by these two events.

I came house full of crap ( my wife is a hoarder ) but a home full of love. We all do our best with our illnesses and limitations. I see this more clearly now, so the time away had a settling perspective. Its personally scary how focussed and peaceful I have become while coping with this illness and all it implies.

this post is about alternative therapies, but not all ones discussed here in the past arguable benefit. I still have an unnatural number of supplements and needles to take daily as maintenance therapy. I am heading back to germany feb 4 and at this point the family is coming for rest of the therapies which will continue until remission or that long peaceful sleep we will all enjoy one day.

the alternative therapy this post highlights, i hope is what they call pyscho oncology, the emotional and spiritual healing path. To get the whole fear of dieing sorted. a very special german friend gave me this book "staring into the sun", i read it on the plane home. so good. and also an amazing dvd about singing your song. so basically living a fully alive is the best way to stay alive. the author claims 50% survival boost using his emotional therapies. So I am disposed to these approaches and I gained confidence and comfort from the book and the dvd. details on my blog.

so how many more ? I am just sharing my gratitude for my life this xmas. for all the gifts around me and the challenges before me. so these 3 school mums came yesterday for the kids primary school with presents and a big basket of goodies. it was so kind and a wonderful surprise. my wife was so angry ) embarrased and paranoid ) that they came into the house, but soon realised they had kind hearted intentions. she thought i was up to some plan to cleanup plan again. I am keeping my energy for my survival, i cannot invest any more in curing my wife. She still has no effective insight into her hoarding illness and possibly never will. I daughter did help me in a small cleanup so we can cook in the kitchen, she cleaned out the fridge of rotting and really foul stuff.

loving life everyday, that includes wife and kids and friends. i hope this makes sense. the answer either zero or 100 does not alter my joy at living today. the budest ideas really have helped me cope with the uncertainty that our illness can bringing some some.

hugs,
Pete

ps its late like 2am, so i will pop a few digestive enzymes and have some maf314 gcmaf yogurt just in case.
pps and yes i do have some seacumbers in the freezer and yes tomorrow for them and my tcm.

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

I know I sometimes am tough on thinking about your posts.. I want to believe we are doing what we each need to do..I want to believe God only gives us what we can handle.. but then how do we account for all the failings and the deaths around us. It sounds like you have seen alot lately and more than your share.. I am sorry for that.. but yet you still are here and still sharing with us your story.. GOOD for you...

How many more any of us have.. is not a question I think anyone can answer but I want to believe we treasure and honor each we get and everyone we encounter.. from here on out..

I am wishing you well and a joyous Holiday.. Donna

PS.. are you going back to germany after the holidays.. if so safe travels and please let us know how you are doing..

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Pete -
I always enjoy your posts and find them brave and inspiring.
Wishing you a peaceful holiday and feeling better from your treatments in Germany.

I never ever would have guessed where life would challenge and take us with our cancer diagnosis.
We have to believe we are doing the best we can do.
Barb

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

We want to share with you a small Christmas story.

May peace, love and prosperity follow you always!

 

Have a merry Christmas and a happy new year!

 

Four candles burnt in the Advent wreath.  It was very quiet.

So quiet that one could hear when the candles began to speak. 

The first candle sighed and said, "My name is PEACE.  My light shines, but the people do not keep peace. 

They do not want me."  Her light became smaller and smaller and finally went out completely.

 

The second candle flickered and said: "My name is FAITH.  I feel superfluous.  The people don’t want to know about God.  There is no reason for me to burn."  A draught blew through the room and the second candle went out.

 

Quietly and very sadly the third candle voiced,  "My name is LOVE.  I have no strength left to burn.

The people put me to the side.  They see only themselves and not the others whom they should love."

And after a final flicker this light also extinguished.

 

Then a child came into the room.  The child looked at the candles and said, "You should burn and not be out."  The child was sad and nearly began to cry.  The fourth candle spoke up reassuringly, "Do not be afraid.  As long as I burn, we will be able to light the other candles again.  My name is HOPE."

 

With a little piece of wood the child took light from this candle and lit the other candles once again.  The room brightened and filled with peace, faith, love and hope.

 

Merry Christmas and a joyful New Year!

 

 


 

candles

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

What an absolutely lovely little story that is.  Thank you so much for sharing it with us.

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Pete -
I always enjoy your posts and find them brave and inspiring.
Wishing you a peaceful holiday and feeling better from your treatments in Germany.

I never ever would have guessed where life would challenge and take us with our cancer diagnosis.
We have to believe we are doing the best we can do.
Barb

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

To have a few kind friends, what else does a man need. well a few things, but friendship sustains us on this challenging game of life.

its wonderful how well i feel from the german treatments. All the mum's from the school at the xmas eve mass kept on saying how good i looked. its not vanity, maybe just a little. But they look me in the eye, give me the deepest hugs. to feel loved the best medicine. some of the mum's have had cancer.

my xmas with the family has been very peaceful. I hope yours was as well and full of love.

i never could have guessed how much i have changed from being the money hunrgy greedy capitalist, to what i am today. I prefer the life i have today even with the cancer. thats a brave thing to say, but its the truth. of course i want life and a cure, but not at any cost and on my terms.

I gave my self the best xmas present, a crystal rat, the zodiac to remind me of removab, my son a crystal heart because he has a beautiful heart, my daughter a crystal rabbit because she loves her rabbits and is a gentle as a bunny, my wife a crystal necklace becuase she is gorgous and my german friend a crystal owl's because she is wise and strong like the owl and great to talk with.

on xmas night I made up; 8 days of my pill and supplement regime. it took about 2 hours. I have started dca and metformin and i am so happy with the maintenence regime i have while away from the clinics. it would be great if the cea keeps on falling. time will tell.

hugs,

Pete

 

ps and i did my thymus inject and artemisin plus iron injection and then watched a movie with wife.

manwithnoname
Posts: 390
Joined: Jun 2012

Hi Pete, good to hear you still so positive, just wondering where you get the DCA from, Canada?

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i got dca from hallwang clinic germany.

i feel good, being depressed now would be ungrateful.

i am making a remote control car with my son, xmas is special.

hugs,

pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i hope you son enjoyed it.

hugs,

pete

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

its sad, but loosing friends comes with the territory with a cancer diagnosis. its bitter sweet, the friends i have lost, i love in my way, they stay with me in my heart and effect me each day, hopefully for the best.

the question, to me does not need an answer. but in its asking it gives me peace as I know I appreciate the love and kindness of xmas day in a special way. whatever happens is good, if this happens to be the last, its good, if i have 100 more xmas its good.

to be fully alive, and to fully appreciate what i have got, the ultimate gift this xmas. the gift of awareness. for that i am grateful.

maybe xmas is the day when rest of the world get cancer. my wife and kids know about mortality, they love and care for me more. they take my life, but then other lives, and ultimstely their own lives a little more preciously. less influenced by commercialism and more open to loving relationships.

We spent the day with grand parents, they are wonderful but really old, it may be our last xmas, for me , for them. thats the joy of life, its fragility and for me its temporaryness and impermanence.

 

hugs.

Pete

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

I am still unsure... 

How were you able to put those words out there... that this may be you last...

I can't put that in writing.. I think it and have even probably said it .. but to put it down in print is so scary to me..

God Bless you Pete.. I hope the holiday was all you wanted it to be.

Donna

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

getting the feelings into thoughts, and then into print.

facing my challenge head on is my style, possibly a bit blunt some some of my friends here, but as often been said, better out than in.

being optimistic and still realistic at the same time is a strange duality i have to explore, but my life is great.

my holiday has been wonderful so far, the wife, the kids, the friends fantastic in many respects. 

god bless us all donna, maybe putting some of my feelings into print may help others, it helps me.

sometimes I may be percieved as slightly to positive if its possible, but I am a real person with  real challenges. so far life has equipped me well to deal with my challenges.

this illness is just a part of life, i think i'll give it the energy and attention it needs, but no more. coming home to be honest was more confronting in some ways than i imagined, but i won't go into that here. just to say, my family life aint the brady bunch by a long shot. how many more times can i come home to the family to cleanout the fridge and the kitchen ? that's really anotheralternative  theme of this post. but that more to do with my wife hoarding illness.

hugs,

Pete

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

you are a great inspiration for all of us! i admire you for your wonderful outlook on life. thank you for sharing . now here's wishing you many many many more Christmases!  safe travels

hugs

judy

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I think its good to delve into our hearts, might as well do it while we are alive, its just to dam late if we are in the box.

ironically delving into our hearts and emotions is apart of the wholistic healing model i am into, so to some extent these more emotional posts are actually apart of my therapy.

but i write the posts because i am motivated to do so, not as some therapy thing i have to do. that said i look back on the posts or my little messy blog and i think my friends and family know to some extent whats going through pete's mind , his fears, dreams and yes his desire to survive and his attempt at such.

the inspiration thing is important to me, really. the idea that i can be me and in some way inspire a few friends is humbling, possibly the most amazing accomplishment of my life, its something i am very proud of, so thanks.

thats so sweet, what else are friends for. I note how caring you are for so many here, its wonderful and needed. godbless you, godbless us all.

hugs,

Pete

Kathleen808's picture
Kathleen808
Posts: 2300
Joined: Jan 2009

Pete,

It is always great to hear from you.  Thank you for sharing your story in such a way that you, your family and your friends come alive to us.  I hope your days continue to be filled with peace and that you continue to look and feel good!

 

Aloha,

Kathleen

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

peace of mind has been my goal for two years now and despite illness progression and regression and family troubles i still have it in increasing amounts. something i am very grateful for.

its lovely to hear from you and i hope that life is good for you, dick and the girls. to some extent the more real we make our stories, the more we share i think the more i get out of csn. even if the cancer survivors network is largely conventional, i think the fact it tolerates a survivor with my approach is optimistic that the wholeist approach one day will be the norm.

hugs,

Pete

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