While We Are Waiting…..A Sundance Rant

Sundanceh

I’m not known for rants and raves too much – I try to stay steady and calm in the face of adversity.

But, quite frankly, I’m a tad bit “upset.” This must be one of those times when Shayenne used to say that Her Lion was “roaring.”

And I am roaring mad – mad at a disease that continues to chip away at my body, my mind and my soul. Mad that we have not found more humane ways of treating this affliction. Mad that we are treated with “medicines” that are more harmful to us than the disease itself.

Did I mention that I was mad?

I’ve been engrossed in my scan results ever since I’ve received them. I’ve pored over them and over them again. And I’ve been doing my research on all of the terminology that was presented – and what has shocked me is how much these “Surgeries and Treatments” have done to me over these years. No wonder I’m a wreck and a useless husk of a man that I have become as a result of all of this mess.

It’s upsetting – it’s maddening – it’s infuriating – and it’s my life now – and I’ve got to live with it the rest of my days and try and make some sense out of what has happened and what I’m going to do to get me to the finish line with as much of the “Original Equipment” as I have left.

“THE CURE” is really becoming worse now than the disease itself.

This “Addition by Subtraction” method of dealing with Cancer in the medical community has got to come to an end – and I mean Pronto.

This last year of chemical warfare and all of the associated surgeries and treatments has taught me that I cannot continue to keep doing this forever. I remind myself that these are “Treatments and Not a Lifestyle.”

Like the waves of the ocean against the rocks, a little bit more of me gets washed into the ocean with each procedure – reduced from rock to mere sand, until one day there might not be anything left of me to even bury.

As the time passes, I’m inclined to believe what John23 has said about the debilitating effects that western medicine treatments afford us, if we stay on them for long enough.

And this post is especially relevant because there are so many new people just starting out for the 1st time, or in their first or second year – but after 7-years in this toxic waste dump that is my body, more and more truths are becoming more self-evident to me with each passing day.

I wish it were not so, but I’m not the type to “bury my head in the sand.” And I never will be. The Truth – the Whole Truth – and Nothing but the Truth is the best remedy for us all.

I can’t just sit here and pretend that none of this has happened to me and stay with the status-quo. I’d be a fool to not entertain other ideas and seek out new ideas from the pioneers that have the courage to stand at the fork in the road – and then choose the path less traveled.

What good is my journey if I can’t impart to myself and to you what I am discovering – the good, the bad, or the ugly?

I guess the conclusion I draw out of all of this is… if we can – do the surgeries and treatments and then jump off the train and get out of there as soon as you are able. . Of course, I as well as anyone, knows that this is not always possible.

It’s been said that “Knowledge Equals Power.”

But, I also think now, that “Knowledge Equals Choice.” And that’s not bad a thing either. A choice or a chance is really all we are asking for anyway.

After I told my onc that I almost cancelled his appointment, he told me, “You’re not a doctor – even if you think you are.”

LOL:)

Well, maybe not, but I play one on the board:)

But, what I am is a “well educated and well informed patient”, who is going to have to take his treatment options to even newer heights if this Cancer doesn’t get the message and bounce.

While I’m on a roll….let’s go ahead and talk about the BAD on the scan report and put this portion behind us.

I’ve got Bronchiectasis – it is an uncommon “disease” and can be categorized as a chronic obstructive pulmonary disease manifested by airways that are inflamed and easily collapsible, resulting in air flow obstruction with shortness of breath,

A by-product of two major lung surgeries and 7-wedge resections of my right lung removed? Hmmm. No wonder I can’t catch my breath anymore since the DaVinci surgery. Coincidence?

Next, my Gallbladder has “collapsed.” That sounds pretty ominous to me. The research I did on this did not reveal too much. I found an entry from a doctor that said this is nothing to worry about. Really? Are you sure?

Next, Retroperitoneal and Pelvic Lymphadenopathy. This is swelling, or enlargement, of the lymph nodes. Swollen lymph nodes may be brought on by a variety of reasons. Some occur due to local infections, while others can appear due to systemic conditions or “diseases.”

Next, Avascular Necrosis of the Femoral Head. This is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone's eventual collapse. The most common joint affected by avascular necrosis is the hip. Avascular necrosis worsens with time. Avascular necrosis most commonly affects the ends (epiphysis) of long bones such as the femur, the bone extending from the knee joint to the hip joint. Risk factors or conditions associated with avascular necrosis include radiation treatments and chemotherapy.

When I first started out in my fight back in ‘04, I was preparing for my rectal resection and did 25x of external beam radiation into both hips. There has been pain there ever since. I always suspected a correlation but my research has now confirmed this.

Splenomegaly – enlargement of the spleen. Responsible for platelet production and for regulating white and red blood cells. My white blood cells are down and my platelets now sit at 71,000, down over 32,000 during the six-months of Folfiri treatments alone.
Chemo induced? You betcha! Oxaliplatin really did a number on them and permanently I’m sorry to say.

Are we having FUN yet?

I think it becomes so clear to correlate the “side effects” of the treatments and surgeries and the “after-math” or “fallout” from treating this deadly disease. It stands before me in black & white print. There is no denying it – and I’m certainly not in denial. Only a fool would pretend that this doesn’t exist or happen to us. It certainly did to me.

This further clarifies my point that the longer we “stay in the system” and keep taking these dangerous drugs and treatments, we are paying a high price for our continued survival. As time drags on, I’m beginning to think it could get to be “too much.” At least for me.

I’m still functional to a degree, but everything is so much harder on me now. There is still some “Quality” but I see it fading with every treatment. Too much more of this and I can see it slip away from me.

The body was just not designed to take this sort of abuse indefinitely. It’s a wonder machine, but it does have design limitations.

The Lion has “roared.”
-Craig

wolfen

Oh, Craig
In our eyes, you are far from a husk of a man. You are the port in this terrible storm so many are going through. Your knowledge, wisdom, personality and just being you are so appreciated here.

I am appalled that your onc didn't think it necessary to discuss these things with you. He may be the "doctor", but you are the human being.

Luv,

Wolfen

lisa42

Hey Roarin' Lion!
Hi Craig,

I'm glad you "roared" and got it all out! It is most definitely lousy that the drugs we rely on to save our lives also do so much harm to our bodies in many other ways.
The worry of "how long can my body keep taking chemo?" is what got me researching into the natural/holistic path. I am still doing chemo at the same time because I am afraid to go off it with such a high CEA count and my last scan showing some tumor growth. I still don't know if what I'm doing with the many supplements, the detox cleanses, and and the sauna treatments are helping work on the cancer itself yet, but I DO know that it has all GREATLY helped my blood counts. The biggest and most common side effect of the Gemzar that I'm on is a risk of low to dangerously low platelet counts. When I first started taking it, that was definitely a problem and my dose of it had to be lowered. Recently we upped my dose again and my onc was very worried about what would happen to my platelets. Well, about the same time is when I started all the holistic stuff and guess what? My platelet count has remained completely normal- not low even one time- and my onc is amazed. My red counts have been really good too & they suffered a lot before starting all the supplements. Recent testing (last week) at the naturopath's office showed that my liver function has improved, candida albicans (yeast) problem that I had before is gone, several bacteria that were discovered in me are now gone, and my heavy metals, pesticides, and other chemical levels have gone down significantly.

I'm hoping and praying now it will all start to chip away and blast away some cancer cells too. Worst case scenario- even if it doesn't- I still feel I have benefited by helping my body to function better overall. Oh another note- I had lymphatic massage to release any "clogged or sluggishly working lymph nodes". I was also told that cancer patients should only have lymphatic massage IF they are also doing detox at the same time (which doesn't just have to be sauna- supplements can be taken for it) because lymphatic massage can stir things up, then the detox will flush it all out of the body. My CEA test a few days after my first sauna detox week showed that it went up. I was bummed, but okay with it later because I was told that all I did during the sauna detox weeks could temporarily stir things up, causing a temporary rise in the CEA. "Give it a few weeks" is what I was told. I hope and pray things will show good on the next test!

Also- with your bone necrosis (I forgot what you just called it), I bet there are minerals that can help with that. I've discovered through my naturopath and through taking minerals myself recently and currently that a lot of my joint and bone pain was also caused by the fact that chemo really depletes your body of important minerals & once they are supplemented back into the body, it really helps control that pain. It did for me, anyhow.

So, here's one "pioneer" trying to rustle the cattle- cattle being you, Craig
I know money is an issue for you and it's unfortunate that insurance does not pay for naturopaths. But, you could probably consult with one maybe once or twice and get the info you need. Their prices are all different. I also know when I asked about pricing at the place where I go to, they then said, "Well, we can schedule you for a 1/2 hr appt instead of the usual hour long appt and the cost would be half." So perhaps you could find a place to work with you on that.

Best wishes my roaring lion!

Hugs and prayers,
Lisa

johnnybegood

lisa42 said:

Hey Roarin' Lion!
Hi Craig,

I'm glad you "roared" and got it all out! It is most definitely lousy that the drugs we rely on to save our lives also do so much harm to our bodies in many other ways.
The worry of "how long can my body keep taking chemo?" is what got me researching into the natural/holistic path. I am still doing chemo at the same time because I am afraid to go off it with such a high CEA count and my last scan showing some tumor growth. I still don't know if what I'm doing with the many supplements, the detox cleanses, and and the sauna treatments are helping work on the cancer itself yet, but I DO know that it has all GREATLY helped my blood counts. The biggest and most common side effect of the Gemzar that I'm on is a risk of low to dangerously low platelet counts. When I first started taking it, that was definitely a problem and my dose of it had to be lowered. Recently we upped my dose again and my onc was very worried about what would happen to my platelets. Well, about the same time is when I started all the holistic stuff and guess what? My platelet count has remained completely normal- not low even one time- and my onc is amazed. My red counts have been really good too & they suffered a lot before starting all the supplements. Recent testing (last week) at the naturopath's office showed that my liver function has improved, candida albicans (yeast) problem that I had before is gone, several bacteria that were discovered in me are now gone, and my heavy metals, pesticides, and other chemical levels have gone down significantly.

I'm hoping and praying now it will all start to chip away and blast away some cancer cells too. Worst case scenario- even if it doesn't- I still feel I have benefited by helping my body to function better overall. Oh another note- I had lymphatic massage to release any "clogged or sluggishly working lymph nodes". I was also told that cancer patients should only have lymphatic massage IF they are also doing detox at the same time (which doesn't just have to be sauna- supplements can be taken for it) because lymphatic massage can stir things up, then the detox will flush it all out of the body. My CEA test a few days after my first sauna detox week showed that it went up. I was bummed, but okay with it later because I was told that all I did during the sauna detox weeks could temporarily stir things up, causing a temporary rise in the CEA. "Give it a few weeks" is what I was told. I hope and pray things will show good on the next test!

Also- with your bone necrosis (I forgot what you just called it), I bet there are minerals that can help with that. I've discovered through my naturopath and through taking minerals myself recently and currently that a lot of my joint and bone pain was also caused by the fact that chemo really depletes your body of important minerals & once they are supplemented back into the body, it really helps control that pain. It did for me, anyhow.

So, here's one "pioneer" trying to rustle the cattle- cattle being you, Craig
I know money is an issue for you and it's unfortunate that insurance does not pay for naturopaths. But, you could probably consult with one maybe once or twice and get the info you need. Their prices are all different. I also know when I asked about pricing at the place where I go to, they then said, "Well, we can schedule you for a 1/2 hr appt instead of the usual hour long appt and the cost would be half." So perhaps you could find a place to work with you on that.

Best wishes my roaring lion!

Hugs and prayers,
Lisa

i hear you roar
i have said to my family and to myself since my recurrance dx in january2011.how much of this chemo can a persons body take before it just totally shuts down and can no longer handle anymore.i guess this depends on the person.i respect you to the fullest my friend for going thru all you have been thru as for myself i dont think i would want to be on this poison for that long.i dont blame you for being mad if you want to roar then by all means let us hear you.....Godbless....johnnybegood

PhillieG

Craig, or is it Greg?
There is much I can relate to being in the game for as long as I have, but my experience has not been the same by any means. I wish you had a similar experience as I have had. While I am still in treatment and have had no significant break over my journey, it is like comparing a scratch to an amputation. I do not know if I have the fight in me that you do my friend.

John23 makes some very good points with the potential side-effects of "western medicine". Sometimes the drugs work as they hope they would, yet other times they can cause more problems like you said in your post. If the disease don't kill you, the cure sure as hell could. Should you jump on the other train or ride this one out? When is enough enough? My past 4 years were nothing like my first 3 years. If they had been, I'm not sure I'd still be in the game. Maybe I might have tried the "alternatives" or maybe I'd try "THE alternative".

You're ALWAYS a hell of an inspiration Craig and a hell of a great guy.
Maybe this cancer can get your body but it will never get your spirit and that is the REAL YOU.
Love ya Bud
-phil

Annabelle41415

Treatment
You just never know what all this treatment is going to do to the body. Think it is strange too that your doctor didn't want to go over this report with you. Is it time to get a new one. Glad at least you made an appointment for tomorrow to see what he has to say about it. Maybe they can shed more light and information on the scan. Good luck at the appointment.

Kim

ron50

G'day Craig
That is some heavy crap you are looking at. I did a double take when I saw bronchiectasis. I was dx with that when I was two years old. I was not expected to make old bones as a result. The treatment in those days was two drops of creosote in a glass of milk every night. I did that off and on for nine years,any wonder I got cancer at some stage. The terrible part of the story is that I never had the disease at all. I was born with a hiatus hernia(dx at 27)and the bubbling they could hear in my lungs was my stomache resting on my lungs.


Gall bladdere seems to be a common victim of chemo and or bowel ca treatment. I lost mine since ca. They never seem to look for it tho. Mine announced itself by lodging a small stone in the pancreatic duct causing acute pancreatitis. It is quite amazing how much pain that area of the body can generate. First choice for the cause always seems to be heart attack so you get to appreciate some first class agony while they play chase.


I am in the reactive arthritis phase of side effects now. They tell me (they being doctors)that If it is not treated by drugs that slow down the progression of the damage as opposed to drugs that limit the pain from the damage I will suffer severe loss of mobility. My rheumatologist lets me set the timetable for trying new drugs as I have had bad reactions to all of the arthritis meds I have tried so far. I see him this month to try ,in his own words, my next lot of poison. (The guy is an ex oncologist).


In comparrison to you Craig I only had a short treatment ie 48 sessions of 5fu and 24 treatments of levamisole. The further I get away from the original dx of ca ,the more and complex long term side effects I am finding.

I have nothing but admiration and compassion for you Craig, despite all that is said about the improvements in ca treatment, the results still seem to be cut,burn or poison. I have copped a few serves in the past for stating that opinnion but it is one that I have earned the hard way.

You are in my thoughts and have my best wishes mate to make the best of what you have left,Hugs Ron.

Lilmiss82

ron50 said:

G'day Craig
That is some heavy crap you are looking at. I did a double take when I saw bronchiectasis. I was dx with that when I was two years old. I was not expected to make old bones as a result. The treatment in those days was two drops of creosote in a glass of milk every night. I did that off and on for nine years,any wonder I got cancer at some stage. The terrible part of the story is that I never had the disease at all. I was born with a hiatus hernia(dx at 27)and the bubbling they could hear in my lungs was my stomache resting on my lungs.


Gall bladdere seems to be a common victim of chemo and or bowel ca treatment. I lost mine since ca. They never seem to look for it tho. Mine announced itself by lodging a small stone in the pancreatic duct causing acute pancreatitis. It is quite amazing how much pain that area of the body can generate. First choice for the cause always seems to be heart attack so you get to appreciate some first class agony while they play chase.


I am in the reactive arthritis phase of side effects now. They tell me (they being doctors)that If it is not treated by drugs that slow down the progression of the damage as opposed to drugs that limit the pain from the damage I will suffer severe loss of mobility. My rheumatologist lets me set the timetable for trying new drugs as I have had bad reactions to all of the arthritis meds I have tried so far. I see him this month to try ,in his own words, my next lot of poison. (The guy is an ex oncologist).


In comparrison to you Craig I only had a short treatment ie 48 sessions of 5fu and 24 treatments of levamisole. The further I get away from the original dx of ca ,the more and complex long term side effects I am finding.

I have nothing but admiration and compassion for you Craig, despite all that is said about the improvements in ca treatment, the results still seem to be cut,burn or poison. I have copped a few serves in the past for stating that opinnion but it is one that I have earned the hard way.

You are in my thoughts and have my best wishes mate to make the best of what you have left,Hugs Ron.

Hey ROCK
Everyday I ask myself how much longer can I do this. To feel sick more days than I feel better? Is it really worth it? But than I say "YOU'RE BEING A BABY!!" CRAIG HAS BEEN KICKING A** FOR 7 YEARS!! QUIT YOUR WHINNING!" You inspire so many people and I will admit you have impacted my life and encourage my fight. You rant/rave as needed it's healthy to get it out. I do support the fact that chemo is pure posion and that is why I have chosen to also seek the advice of a natropath. It's expensive yes, but I can't put a price on my will to live. And you are just as important, maybe if you like I can tell you what I'm taking and you can go to your local health store and try some of these things out?? Let me know ROCK I got your back :)Melissa

christinecarl

Rawwwrrrrr
You have always been such a help to me. You've got plenty of roaring left to do my friend.

MrsJP

Thoughts
Sending a big Hug your way....
JP

MrsJP

Thoughts
more HUGS...

Kathleen808

Craig
Craig,
You are an amazing man. Your words are so strong. Aloha to you my friend.

Kathleen

pete43lost_at_sea

roar baby roar and then snore
craig,

you got the news and just process it your way. i think getting the details off your chest is essential. now do your research of course and try to REST.

a good sleep maybe the secret to better health we have all been missing.

re
"After I told my onc that I almost cancelled his appointment, he told me, “You’re not a doctor – even if you think you are.”

well mate you are a blooody expert patient, you have an honors degree, a masters degree in crc and if the onc could listen to you he would learn. at least some empathy and maybe some medicine.

yesterday i heard about qidong its breathing therapy in the forest, its supposed to be excellent for health and cancer.

your always welcome in the walking post, it offers special benefits.

hugs,
pete

Unknown

pete43lost_at_sea said:

roar baby roar and then snore
craig,

you got the news and just process it your way. i think getting the details off your chest is essential. now do your research of course and try to REST.

a good sleep maybe the secret to better health we have all been missing.

re
"After I told my onc that I almost cancelled his appointment, he told me, “You’re not a doctor – even if you think you are.”

well mate you are a blooody expert patient, you have an honors degree, a masters degree in crc and if the onc could listen to you he would learn. at least some empathy and maybe some medicine.

yesterday i heard about qidong its breathing therapy in the forest, its supposed to be excellent for health and cancer.

your always welcome in the walking post, it offers special benefits.

hugs,
pete

This comment has been removed by the Moderator

idlehunters

unknown said:

This comment has been removed by the Moderator

Sooooooooooo?????
Whats up Whats up!!!!

It sure was nice to see a post with so much information. From ya'll. I too...like you.... don't want my head stuck in the sand.... EYES WIDE OPEN..... I want to know the low down all of you go thru...good or bad..... it is what it is. These are not statistics... no sir.... these are hard core facts from REAL people... people LIVING it... That's why I came to this forum from day 1.

Craig, obviously you have not shared the entire scan results...... although I do soooooo relate to your side effects..on a much lesser lever of course...... YOU KNOW WHAT NEWS I AM WAITING FOR!!!!!!! So...still patiently waiting........ HUGS!

Jen