Stage IV survival without chemo...it happens

kristasplace
kristasplace Member Posts: 957 Member

Back with a fury! Actually, passion is a better word!

This is a looooong post, so please bear with me! There's at least a little twist at the end!

First of all, I'm so happy to see so many of my old friends still on here that I haven't talked to since I left the board in 2010. I know a lot of us left soon after Donna died; it was just becoming too much, and the stress from that, coupled with other 'weird' things that were happening on the board, drove a lot of us away. Instead, we congregated on facebook. There's still the constant losses that happen with cancer, but instead of letting the pain devastate me into an abyss like it used to, I grieve as I need to, and then remind myself of what a special honor it was to get to know them and share a small part of their lives.

It was my strong belief (and it still is), that support groups like this one are an absolute necessity. I honestly don't think I'd be doing as well as I am if it wasn't for some key people I met on this site that gave me the incentive to do what I felt I had to do. I also believe that if the groups become too stressful and doing more harm than good, you have to step away from the constant thoughts of what cancer can do, and make yourself sick. 

Over the years, controlling my stress has been my number one priority. Many people will argue with this (especially the doctors), but my cancer was triggered by a life-altering, stressful event that lasted about two years (It was a nightmare divorce). I knew for certain it was stress because of two, big factors; before my diagnosis, which took two years to figure out, every time I'd experience any kind of stress, my symptoms would flare up and get progressively worse as the months and years went on. The factor that sealed this assumption for me, was my surgeon aging the tumor to the exact length of time when the life-altering event was taking place. Divorce occurred during the 3-5 years before diagnosis, and the tumor was 3-5 years old at diagnosis.

Knowing what triggered my cancer was VERY important. There's no better way of stopping something from happening if you know what's going to cause it to happen. The same can be true for curing or treating some illnesses. I knew my diabetes was caused by my weight, so I lost weight and the diabetes went away. Of course this won't be true for everyone or for everything. I can't undo my neuropathy because I can't go back in time and not do chemo.

I knew right away it was detrimental for me to keep my stress levels down and to learn how to control it when I did experience it.

It took a long time, and a lot of study and practice was necessary, but I got to the point where I was able to let a lot of stressful events simply bounce right off of me. I haven't mastered it, that's for sure, but I did get a much better understanding of how the brain works; particularly when dealing with stress, and I learned how to separate myself, or exclude myself, from any situation that was outside of myself. Things I couldn't control and could never control were outside of me, and beyond me. Things like getting stuck in traffic, or an angry person verbally attacking me, or even the anticipation of the results of a scan. When I really thought about it, I found that a lot of the things that stressed me out were outside of me, and the only thing I could control was the way I chose to percieve it and react to it. It required a lot of "checking"; or stopping to think about the situation before I chose a way to react to it, if I chose to react at all. 

I was living in a very precarious situation beginning in 2009 that constantly tested my ability to control my stress. I was getting a recurrence about every year, and I began suspecting early on that it was mainly because of how and where I was living. I was able to get rid of a small lung met that popped up by consistently juicing for a month, but there was a bigger lung met; one they found in 2008, but didn't treat because it remained stable, that began to grow exponentially in 2012, right after I had a horrible confrontation with a relative.

The confrontation wasn't only mean and unexpected, but included several other people she used to bully me. It put me into one of those life-altering, stress events that caused a chain-reaction of even more stressful events that occurred over the course of a few months. I had been able to control my stress levels during most of her angry confrontations with me (the big one hadn't been the first) for the most part, but she was so hell bent on doing whatever she could to control me, she pushed me above and beyond my stress-handling threshold. To explain the whole situation would take a novel...well, it sort of did, but here's a short summation: I was the sole caregiver for my dying, nearly bed-ridden grandmother, but one of my other relatives was involved who was basically a type-A control-freak, who for some unknown reason, thought I was HER indentured servant.

I lived in the house and was a 24/7 caregiver for seven months until I got too sick to do it full-time anymore. Hired caregivers were brought in to relieve me for a few weeks while I recovered from surgery. When I went back to it, I started off with only three days per week, and the hired caregiver took four. The four day break was such a freeing relief for me, I wanted to keep it like that. My relative didn't want to keep it like that and insisted I take more days to save the family money. I was already saving the family money by caregiving three days a week, and I didn't feel I could handle any more than that and be able to maintain my own health. That wasn't anywhere near the only issue, but it was the one that sent her on a mission to do anything and everything she could to get what she wanted.

I loved my grandmother, but I knew it was of the utmost importance that I got the hell out of there and away from that relative.

As fate would have it, two weeks after my lower left lung was removed in 2012, the relative (who really didn't have the authority to do so, and probably thought this one, last move would finally push me to give in to her demands), kicked me out of the house. I had been threatening to leave for some time, but other relatives begged me to stick it out. By gettng booted, I no longer had a choice. It was either work as my relative wanted me to, or leave the care of my grandmother solely in the hands of strangers.

So I left.

It was such an unbelievably horrible situation for me AND my grandmother; that relative wasn't nice to her, either.  

Once I broke free from that, my regular recurrences stopped. 

Then I made the mistake of getting into a serious relationship that didn't only end in heartbreak, but in a way that was almost identical to the way my marriage ended. I soon got another recurrence, and wouldn't you know, it was in the exact same spot as my original, or 'divorce' tumor had been. 

I had NOT been able to control the onslaught of stress that came from that last break-up. It hit so hard and was so devastating, I lost the feeling in my left leg immediately and was only able to gain partial use of it for four months. It hasn't regained full function since. When the same event happened during my divorce, I lost the feeling in both legs and couldn't walk for fifteen minutes. I think it was worse the second time because of the neuropathy I have from chemo treatments, but I really don't know why my body reacts in such a debilitating way to that kind of stress. Maybe I'm just sensitive.

At first I was concerned that the stress from the break-up would make the cancer come back somewhere, but when my next two PET scans came back clear, I thought I was out of danger and didn't think it was going to come back at all. I wasn't considering the fact that cancer doesn't always show up quickly unless it has a high mitosis. When the PETs started lighting up in the exact same spot as my original tumor a year later, I knew I was probably going to have a problem.

So to get to where we are today:

Colorectal cancer diagnosed in 2007, took the typical 5FU pump with 30 radiation treatments to shrink the tumor. Surgery for cholectomy and gallblader removal in January 2008; temp ileostomy given. Went ahead and did the Folfox for six months. First recurrence of a lung met discovered in November 2008, but I didn't find out about it until I read my medical record in March of 2009. Two docs thought it was cancer, but my onc didn't, so nothing was done about it.

Ileostomy reversal happened in June of 2009. Another recurrence in an ovary found in 2010. Had the surgery to remove it, along with two other surgeries; one to implant an abdominal mesh to repair eight abdominal hernias, and the other to repair abdominal adhesions. Chemo was recommended, but I said no.

Small lung met found in 2011, but disappeared after juicing regime (Yes, the onc was surprised. Haha). Old lung met found to be increasing in size exponentially in October, 2011. After a huge insurance fiasco and having to get an entirely new medical team, the surgery to remove the lung lobe finally happened in March of 2012. Again, I refused chemo despite the strong urging of my new onc who said some really scary things to try and persuade me to do it. I don't know if he was knowingly lying to me, but he said a lot of the same things my other onc had said almost verbatim that made me think they're trained to say certain things. Regardless of that, I had done way too much research to believe chemo would do a bit of good, let alone save my life. I hadn't done too badly over the years at keeping my cancer at bay. I knew it wasn't a fluke that I haven't been ravaged by cancer after having so many recurrences, yet no chemo treatments afterwards. I eat primarily healthy (though I only do the really difficult diets in matters of emergencies), I indulge my passions, at least two of them every day (I love to read, write, paint, and be surrounded by animals), I'm keeping my stress levels way down (I'm more happy than ever being single, and the little business I started keeps me surrounded by one of my passions), I take walks in nature five days a week, and probably most importantly over everything else is that after I was diagnosed, I never really believed I was going to die from this. There've been moments when I've experienced that searing ball of panic that rises up from your gut and rolls its way up your body till it spreads across your head like stinging nettle; particularly the first time I found out I had a metastasis, but that feeling never lasted very long before I developed some plan or other for beating the crap out of this disease, chemo be damned.

The belief isn't because I'm any different from anyone else, or more special in any way. It stems from my experience pre-diagnosis. I suffered for two agonizing years with full blown colorectal cancer symptons. In the beginning, I had a good job with benefits that I lost from being sick too long with secondary infections I had no idea were cancer/immune related at the time. By the end of the two years, I'd have to send my mind off to a far off place separated from my body to try and get some relief from the pain. The last four months were the most heinous.

During those dark days, I had many times begged for death and had considered ending it myself on a few occasions. If I had been braver, and had an easy means, I look back and think I might have done it. Each trip to the ER that yielded zero results just sent me deeper and deeper into hell, but if I wasn't going to end it myself, I didn't have any other choice but to keep reaching out for help.

The ER, which is absolutely useless unless you're having a heart attack or some kind of physical trauma, usually took CT scans of my abdomen and pelvis (they couldn't see the tumor in the scans because it was blocking the contast from going all the way through), and I kept going to the clinics. I lost both of my new jobs that I'd been struggling through with random illnesses. I rarely left the house because of the pain, bleeding, incontinence and/or vomitting. I feared I'd have an episode in the grocery store of the small town I lived in at the time and everyone would know I had butt problems (I had a lot more humility back then). It was surviving all of that that made me almost completely lose my fear of death, and if you're not afraid to die, you can only go up from there. Cancer had its chance to kill me and I think it nearly did. Now that I know its game and how it plays it, it's not going to get another chance. I've proved to myself that I'm stronger than it is, and that's why my belief is so strong.

I was finally able to get help when I met a PA at one of the clinics who introduced me to a county health service that paid for emergency medical treatment. They arranged for the colonoscopy that finally revealed the wicked little culprit who was twisting my guts.

The most recent met was found at the back of the anastomotic stricture in 2015, but couldn't be reached for biopsy or removal after three, or maybe it was four, colonoscopies. As it increased in size, discussions with my surgeon about removing my colon and giving me a permanent ostomy began. She knew how hard of a time I had with my last ostomy, so she didn't seem to argue about my refusal too much at first. She instead tried to figure out what else we could do, but since I'm not a candidate for resection because of all the damage in that area, she was definitely going to push me into an ostomy. That was in April of this year.

She ordered an MRI and one more PET scan to get more recent views of the area, and I put them both off until we got closer to my next appointment date with her, which wasn't scheduled until August.

I immediately began a 99% raw diet that I followed religiously for five weeks, and then got the MRI in June, and the PET/CT in July.

Both scans showed no evidence of disease, but...

This is where things get weirder for the surgeon than they are for me, and it's the twist in the story that could possibly end in a cliffhanger, depending on which side of the stick you're on.

My PET scan is interpreted as 'all clear'. 

The surgeon says, "that just doesn't happen". She tells me the radiologist who interpreted the scan meant 'stable' when he wrote 'all clear'. But she had a puzzled look on her face and searched through my MRI report on her computer to try and explain it. She knows if the radiologist wrote 'clear' when he meant 'stable', he made a huge mistake. But even if it is stable, you'd think they'd be just a little curious as to 'how' it could suddenly be stable. I'm not in any kind of treatment, so they can't attribute it to chemo.

Either way, I'm pretty sure the docs will think of some excuse or other to debunk the fact that my body's healing itself with stress control and diet. They're trained to think in a one-dimensional box while I'm free to think outside and around it. I don't neccessarily blame them for that, but I do blame them for refusing to acknowledge what they see right in front of them and making implausible excuses for it. I know for a fact I'm not the only one of my kind.

Anyway, that was almost two weeks ago.

I was planning on getting the PET re-read by another radiologist, but the scanning company won't do it without the doctor requesting it. The surgeon's nurse wants me to send them a copy of the scan, so I'm going to pick up a disc and send it to them. She and her radiologists can look at it and interpret it themselves. It's kind of an important thing to know. I'm not going to complain about whichever one it is, though I hope the radiologist who interpreted it the first time is the one who's right.

Thank you so much for having the patience to read through this novella. I know many of you can relate to at least some of it.

 

«1

Comments

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited September 2016 #2
    I just read through it. Very

    I just read through it. Very interesting. I had the pre surgery and post surgery chemo but am no longer able to have chemo, I'm not a candidate is how they put it so I have to use other means to deal with any mets that might come up. I had two lung spots earlier this year that were radiated.

    You mention having infections after the surgery. I've read that people who have infections after have a lower rate of recurrence than people who don't. I also had an infection and an abcess and wonder if that will help me battle the beast.  

    I also try to avoid stress so that it doesn't negatively affect my body's ability to fight cancer itself by lowering my immune system but I've also heard from several sources that one of the problems with cancer is that the body often doesn't recognise the cancer is there so it doesn't make an attempt to deal with it. So I'm kind of on the fence about that one.

    Generally I live my life not really thinking about the cancer. Its at the back of my mind all the time and every time I go to the bathroom and have to empty my ostomy it's a reminder but I try not to dwell on it. Sometimes something will happen and I'll get down in the dumps or angry about it and when I have a test coming up or am waiting for results- like right now- it gets to me. But most of the time I am still in denial so I don't obsess over it.

    Jan

  • John23
    John23 Member Posts: 2,122 Member
    edited September 2016 #3
    Thanks.

    It's all I can think of saying, Krista.

    John

     

  • kristasplace
    kristasplace Member Posts: 957 Member
    JanJan63 said:

    I just read through it. Very

    I just read through it. Very interesting. I had the pre surgery and post surgery chemo but am no longer able to have chemo, I'm not a candidate is how they put it so I have to use other means to deal with any mets that might come up. I had two lung spots earlier this year that were radiated.

    You mention having infections after the surgery. I've read that people who have infections after have a lower rate of recurrence than people who don't. I also had an infection and an abcess and wonder if that will help me battle the beast.  

    I also try to avoid stress so that it doesn't negatively affect my body's ability to fight cancer itself by lowering my immune system but I've also heard from several sources that one of the problems with cancer is that the body often doesn't recognise the cancer is there so it doesn't make an attempt to deal with it. So I'm kind of on the fence about that one.

    Generally I live my life not really thinking about the cancer. Its at the back of my mind all the time and every time I go to the bathroom and have to empty my ostomy it's a reminder but I try not to dwell on it. Sometimes something will happen and I'll get down in the dumps or angry about it and when I have a test coming up or am waiting for results- like right now- it gets to me. But most of the time I am still in denial so I don't obsess over it.

    Jan

    Hi Jan! I hope you enjoy reading a lot, cuz here's another novel

    You're so right about the body not recognizing what a cancer cell is. Cancer is our own body turning on itself so the healthy cells think the mutant cells are the same as them, and they don't attack them. I've read different ideas about how a strong immune system changes that, and this explanation makes the most sense to me; the healthy cells know there's something "off" about the cancer cells, but not enough so see them as the enemy. Our cells are 'intelligent', so in boosting the immune system and making those healthy cells super healthy cells, they can easily see the difference between themselves and the cancer, and they turn on them and destroy them. 

    I believe that explanation above any others because I've read scientific articles about researchers who were developing methods of 'training' the body's cells to recognize a healthy cell from a cancer cell. If our cells are trainable, then they really do have an intelligence, and it makes sense that we can train them ourselves by simply making them superiorly healthier than the cancer cells. 

    I never had an infection after a surgery, but that's a very interesting hypothesis. Maybe the bacteria kills the cancer cells??? I read something years ago about how researchers were using viruses as a possible way of treating cancer. I don't know if they ever implemented that.

    It sounds like you're on the road to figuring out how to take care of yourself. I would definitely look at not being able to do chemo as a blessing because I think it does the complete opposite of what we really need to heal it. People can survive on chemo for very long periods of time, and a select few can survive it overall, but compared to the masses of those who don't survive, it's a huge risk (I'm talking about stage IV's, primarily).

    I know it's scary...believe me, I know. With the doctors swearing up and down that chemo's the only way to survive, not doing it makes you feel isolated, alone, and in danger. But that's just a perception, not necessarily a reality. It just takes time and motivation to figure out what will work for us individually to train our cells, as well as heal our minds. A cancer diagnosis can do tremendous damage to our psyche and way of thinking, and to me, chemo only exacerbates that. Our minds have to be healthy, too, and we can retrain them to be. 

    There really are a lot of options besides the standards of care that I've seen work for people I know personally. There are at least two people on this very board who've been cured for over a dozen years, and they did it without chemo, and in some instances, were inoperable with mets everywhere. I don't know if you've run into them yet, but they're here. There have been times on this board in the past when people who've openly spoken up about 'alternative methods' and were verbally attacked and ridiculed for suggesting such a thing can work. It's a touchy subject for some people, which is understandable in a way; the last thing we want to believe is that our doctors aren't being entirely honest with us, or that there's a better, more effective way of doing things that's being kept from us. 

    Thank you for your insight, Jan. I'm sending you best wishes for a clean scan. I'll check in periodically to see if you post an update. You're very strong for getting as far as you have, whether you think you are or not. You're still here, and you can be for a long, long time! 

    I'm here if you need to vent or want any nutrition advice. I'm a certified nutritionist, but I only got certified to use it pro-bono for other people with cancer.

    Many cyber hugs your way!

    Krista

       

     

     

    Whatever it is 

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #5
    John23 said:

    Thanks.

    It's all I can think of saying, Krista.

    John

     

    Thank you, too, John.

    I'm just so happy you're still on the board! Not that you're still in the fight, though. This is probably something that's become chronic for us. Each recurrence reminds me that I need to keep myself in line; eat better and calm the hell down! I believe one of these days it will go away and never come back, but I probably need to stay on a strict diet for much longer than I've been doing. It's just so difficult. I can thoroughly understand why people don't want to do it at all. If it wasn't for my tenacity and stubbornness, I woulnd't have been able to change. I simply love food that isn't healthy! I've been able to train myself to eat bad foods very sparingly, and learned how to prepare unhealthy foods like pizza, with healthier, replacement ingredients. Everything just takes time, consistency and a lot of perserverance.

    Are you still using the TCM? 

    Cyber hugs!

    Krista

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited September 2016 #6

    Hi Jan! I hope you enjoy reading a lot, cuz here's another novel

    You're so right about the body not recognizing what a cancer cell is. Cancer is our own body turning on itself so the healthy cells think the mutant cells are the same as them, and they don't attack them. I've read different ideas about how a strong immune system changes that, and this explanation makes the most sense to me; the healthy cells know there's something "off" about the cancer cells, but not enough so see them as the enemy. Our cells are 'intelligent', so in boosting the immune system and making those healthy cells super healthy cells, they can easily see the difference between themselves and the cancer, and they turn on them and destroy them. 

    I believe that explanation above any others because I've read scientific articles about researchers who were developing methods of 'training' the body's cells to recognize a healthy cell from a cancer cell. If our cells are trainable, then they really do have an intelligence, and it makes sense that we can train them ourselves by simply making them superiorly healthier than the cancer cells. 

    I never had an infection after a surgery, but that's a very interesting hypothesis. Maybe the bacteria kills the cancer cells??? I read something years ago about how researchers were using viruses as a possible way of treating cancer. I don't know if they ever implemented that.

    It sounds like you're on the road to figuring out how to take care of yourself. I would definitely look at not being able to do chemo as a blessing because I think it does the complete opposite of what we really need to heal it. People can survive on chemo for very long periods of time, and a select few can survive it overall, but compared to the masses of those who don't survive, it's a huge risk (I'm talking about stage IV's, primarily).

    I know it's scary...believe me, I know. With the doctors swearing up and down that chemo's the only way to survive, not doing it makes you feel isolated, alone, and in danger. But that's just a perception, not necessarily a reality. It just takes time and motivation to figure out what will work for us individually to train our cells, as well as heal our minds. A cancer diagnosis can do tremendous damage to our psyche and way of thinking, and to me, chemo only exacerbates that. Our minds have to be healthy, too, and we can retrain them to be. 

    There really are a lot of options besides the standards of care that I've seen work for people I know personally. There are at least two people on this very board who've been cured for over a dozen years, and they did it without chemo, and in some instances, were inoperable with mets everywhere. I don't know if you've run into them yet, but they're here. There have been times on this board in the past when people who've openly spoken up about 'alternative methods' and were verbally attacked and ridiculed for suggesting such a thing can work. It's a touchy subject for some people, which is understandable in a way; the last thing we want to believe is that our doctors aren't being entirely honest with us, or that there's a better, more effective way of doing things that's being kept from us. 

    Thank you for your insight, Jan. I'm sending you best wishes for a clean scan. I'll check in periodically to see if you post an update. You're very strong for getting as far as you have, whether you think you are or not. You're still here, and you can be for a long, long time! 

    I'm here if you need to vent or want any nutrition advice. I'm a certified nutritionist, but I only got certified to use it pro-bono for other people with cancer.

    Many cyber hugs your way!

    Krista

       

     

     

    Whatever it is 

    Sorry, I thought you said you

    Sorry, I thought you said you'd had an infection after the surgery. Anyway, it's another interesting part of the whole cancer thing that people who do have them have a lower recurrence rate.

    My docotr was the one who told ne about the body not recognising cancer and so not trying to fight it or waiting until it's too late. He said they've found that that'swhy warts are so hard to get rid of on their own, they also have the ability to hide themselves and tell the body that they're just normal. He said most 'cures' for warts are things that irritate the wart to the point where the body 'sees' it and takes action.

    I've posted on here before about my gandmother who had what they called bowel cancer in the 1950's when she was in her fifties and who never had chemo or radiation, just surgery, and who died in her early eighties, I think she was 84, and did not die of cancer. Her kidneys had failed. She was healthy enough that the doctors said she was a candidate for a new kidney but she refused and eventually passed away because she also refused dialysis. I believe chemo was in it's infancy at that time. She had a colostomy but that was it. She was always healthy. Before she got sick we'd go shopping and I'd be tired out, I was in my early twenties at that time.

    I d hav to say that I'm not a big believer in the alternative therapies. I have a couple of friends who have had minor brushes with cancer, both skin cancer, and who swear by Essiac tea and the other by cutting back on sugar. I get sick of them hammering at me about both. And I know of two people who went to mexico for the treatment where they give the person a strict diet and clean the blood of sugars, I don't knwo what it's called. One was a dentist's wife who went twice and died shortly after, the other was a young guy who died while he was there which was within 8 weeks of being diagnosed. The young guy was a particularly sad case as he had three young children and a wife that was a stay at home mom who had never worked. The company he worked for- my daughter's workplace- got together and had a big donation drive because they knew his wife and kids would need help and he used the money to go to Mexico for the cure. He died there.

    Right now a woman I know is using gofundme to try to get together $50,000 to try the Mexican cure. I don't know how long that gives her for treatment. I know when the other people I mentioned went about 5 or 6 years ago it was $15,000 a month. So maybe it's up to $25,000 a month and she wants two months? No idea. It just makes me angry. I feel that they're preying on the scared and hopeful who are just trying to live and using up their last resources. Shameful.

    I see things posted on facebook all the time about how cannabis is a cure or a certain spice or some other thing. The lastest I was told was taking a spoonful of baking soda every day. There are so many theories and every one I look up has articles that say they don't work.

    Regarding chemo, I was really on the fence about doing mop up chemo. because of the infections I was starting it was past the time period they like to start it in. Nt onc said that reduces the effectiveness byt quite a bit. But I was scared that if I didn't and it came back I'd be kicking myself inthe butt for not doing it. I started getting blood clots after the first coupl of months and my onc just told me to take adult aspirin. She didn't have me tested for being prone to blood clots. So one morning two days before my next appointment with her to tell her I was going to stop it because the side effects fomr it- oxyplatin- were too much- and I had a blood clot go to my lung. A pulmonary embolism. By the time the ambulance got there I'd been dead for a couple of minutes. Luckily, my husband happened to be home from work, he's usually away. He'd called the ambulance and was holding me as I took one last breath and didn't take another. When the ambulance got there they didn't know how long I'd been stopped for so ther assumption was that I'd have brain damage. But they gave me CPR and broguht me back. And then another four to six tmes on the way to the hospital where they brought me back again. I've been given answers from five times to eight times so I'm not sure. At the hospital I had a stroke, a brain bleed between the hemispheres, my kidneys failed, my barin swelled to the point they were going to take a piece of my skull out but stopped just in time, for two days my heart raced at over 200 beats a minute, there's probably more I've forgotten, I have to rely on my family and friends' information as I was unconscious. By the time they were allowed to visit me I'm told I had 17 IVs in me. I was put into a medically induced coma becaue I was trying to pull my lines out and when they stopped the drugs I didn't come out of it for another two weeks. When I finally did wake up I was fully paralyzed. I could feel everything but my body had stopped communication with itself and I couldn't move a muscle. Over the next almost four months I went from barely able to talk or move anything and having to relearn how to do everything to being able to walk a few steps and was sent home like that. Still mostly in a walker and wheelchair. It was unbelievable horrible. But I ended up the same. My family had been warned at the beginning that I'd never be the same and might not even know them and might end up living in a nursing home. They were given the option to not revive me and the suggestion was that having had cancer it might be the kinder decision. Today I am exactly the same as I was but am a bit limited still physically. You'd never know to see me but it shows up when I do certain things. I still ride my horse but I'm very careful. Luckily he's a good. sweet boy and he takes care of me. I'm on life long blood thinners so I have to be careful about that and that's why I'm not a candidate for more chemo or for surgery. Which is fine with me. I find it ironic that they'd have taken a lobe off my lung to get the two spots but because of the blood thinners they chose to go with a precise radiation. It was so easy and the spots are gone. Why wouldn't that be the first choice?

    So there's my long read, ha ha.

    I wish you well, too. I wish us all well. I pray for a cure soon.

    Jan

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #7
    JanJan63 said:

    Sorry, I thought you said you

    Sorry, I thought you said you'd had an infection after the surgery. Anyway, it's another interesting part of the whole cancer thing that people who do have them have a lower recurrence rate.

    My docotr was the one who told ne about the body not recognising cancer and so not trying to fight it or waiting until it's too late. He said they've found that that'swhy warts are so hard to get rid of on their own, they also have the ability to hide themselves and tell the body that they're just normal. He said most 'cures' for warts are things that irritate the wart to the point where the body 'sees' it and takes action.

    I've posted on here before about my gandmother who had what they called bowel cancer in the 1950's when she was in her fifties and who never had chemo or radiation, just surgery, and who died in her early eighties, I think she was 84, and did not die of cancer. Her kidneys had failed. She was healthy enough that the doctors said she was a candidate for a new kidney but she refused and eventually passed away because she also refused dialysis. I believe chemo was in it's infancy at that time. She had a colostomy but that was it. She was always healthy. Before she got sick we'd go shopping and I'd be tired out, I was in my early twenties at that time.

    I d hav to say that I'm not a big believer in the alternative therapies. I have a couple of friends who have had minor brushes with cancer, both skin cancer, and who swear by Essiac tea and the other by cutting back on sugar. I get sick of them hammering at me about both. And I know of two people who went to mexico for the treatment where they give the person a strict diet and clean the blood of sugars, I don't knwo what it's called. One was a dentist's wife who went twice and died shortly after, the other was a young guy who died while he was there which was within 8 weeks of being diagnosed. The young guy was a particularly sad case as he had three young children and a wife that was a stay at home mom who had never worked. The company he worked for- my daughter's workplace- got together and had a big donation drive because they knew his wife and kids would need help and he used the money to go to Mexico for the cure. He died there.

    Right now a woman I know is using gofundme to try to get together $50,000 to try the Mexican cure. I don't know how long that gives her for treatment. I know when the other people I mentioned went about 5 or 6 years ago it was $15,000 a month. So maybe it's up to $25,000 a month and she wants two months? No idea. It just makes me angry. I feel that they're preying on the scared and hopeful who are just trying to live and using up their last resources. Shameful.

    I see things posted on facebook all the time about how cannabis is a cure or a certain spice or some other thing. The lastest I was told was taking a spoonful of baking soda every day. There are so many theories and every one I look up has articles that say they don't work.

    Regarding chemo, I was really on the fence about doing mop up chemo. because of the infections I was starting it was past the time period they like to start it in. Nt onc said that reduces the effectiveness byt quite a bit. But I was scared that if I didn't and it came back I'd be kicking myself inthe butt for not doing it. I started getting blood clots after the first coupl of months and my onc just told me to take adult aspirin. She didn't have me tested for being prone to blood clots. So one morning two days before my next appointment with her to tell her I was going to stop it because the side effects fomr it- oxyplatin- were too much- and I had a blood clot go to my lung. A pulmonary embolism. By the time the ambulance got there I'd been dead for a couple of minutes. Luckily, my husband happened to be home from work, he's usually away. He'd called the ambulance and was holding me as I took one last breath and didn't take another. When the ambulance got there they didn't know how long I'd been stopped for so ther assumption was that I'd have brain damage. But they gave me CPR and broguht me back. And then another four to six tmes on the way to the hospital where they brought me back again. I've been given answers from five times to eight times so I'm not sure. At the hospital I had a stroke, a brain bleed between the hemispheres, my kidneys failed, my barin swelled to the point they were going to take a piece of my skull out but stopped just in time, for two days my heart raced at over 200 beats a minute, there's probably more I've forgotten, I have to rely on my family and friends' information as I was unconscious. By the time they were allowed to visit me I'm told I had 17 IVs in me. I was put into a medically induced coma becaue I was trying to pull my lines out and when they stopped the drugs I didn't come out of it for another two weeks. When I finally did wake up I was fully paralyzed. I could feel everything but my body had stopped communication with itself and I couldn't move a muscle. Over the next almost four months I went from barely able to talk or move anything and having to relearn how to do everything to being able to walk a few steps and was sent home like that. Still mostly in a walker and wheelchair. It was unbelievable horrible. But I ended up the same. My family had been warned at the beginning that I'd never be the same and might not even know them and might end up living in a nursing home. They were given the option to not revive me and the suggestion was that having had cancer it might be the kinder decision. Today I am exactly the same as I was but am a bit limited still physically. You'd never know to see me but it shows up when I do certain things. I still ride my horse but I'm very careful. Luckily he's a good. sweet boy and he takes care of me. I'm on life long blood thinners so I have to be careful about that and that's why I'm not a candidate for more chemo or for surgery. Which is fine with me. I find it ironic that they'd have taken a lobe off my lung to get the two spots but because of the blood thinners they chose to go with a precise radiation. It was so easy and the spots are gone. Why wouldn't that be the first choice?

    So there's my long read, ha ha.

    I wish you well, too. I wish us all well. I pray for a cure soon.

    Jan

    Oh, my sweet heavens....That

    Oh, my sweet heavens....That's an AMAZING story, Jan! You're even stronger than I initially thought. I don't think you're going anywhere any time soon with a will to live like that!

    I've heard of all those 'alternative treatments' that you mentioned. Someone gave me the eissac tea when i was first diagnosed, but I only took it for a short time. The problem with most 'natural' things, aside from diet, is that they have to be taken consistantly and sometimes for a long period of time before they work. It's just hard to know unless you know someone who's had success on it, and even then that's not necessarily proof it will work for everyone. Our bodies are all very different, and so are our cancers and the way our bodies react to different treatments. I'm lucky that I'm kind of sensitive to things and have a very vocal body. It's possible that a strict, nutrient-rich diet wouldn't even work for everyone. Some people have absorption issues and other things that could prevent them from getting it. It's possible though, that there's at least one thing that will work for someone if they take (or have) the time to experiment on themselves with different methods.

    I tried so many things in the beginning, short of the baking soda cure. I took supplements of every kind, did acupuncture and meditation, used a TCM practitioner, took special enzymes, ate apricot kernels...whether any of these things helped, I can't say for sure. I know for some reason my body didn't become infested with cancer despite all the recurrences and lack of chemo. The only thing I know for sure is that a strict, highly nutritious diet works for me when the cancer's mitosis is low to moderate, and if I stick with the diet for at least a month.

    Others, like John, have had wonderful success with TCM. It might've worked for me, too, if I'd been more disciplined about taking the tea and getting more frequent acupuncture. I could feel the acupuncture working to relax me and release heat from my body, but it was too cost prohibitive for me to do regularly (my dog's insurance will cover acupuncture, but mine won't lol).

    I've never heard of a Mexico treatment that costs that much money!! That definitely sounds like something fishy. I know a couple people who had success with different types of treatments they had in Mexico. One of them did oxygen therapy and completely cured her bone cancer, which is a really impressive feat. That's one of the most difficult cancers to survive. If it was nearly any cancer besides bone, I could've argued, like I do with chemo, that she just may have survived without any kind of treatment, at all. But not with bone cancer. I really believe the treatment she got down there cured her. But then again, that's her. That doesn't mean the treatment would've worked for me. I was all ready to go try it if I had to avoid that ostomy, though! lol.

    I hear you about the butt kicking for not at least giving chemo a try. I felt the exact same way. Like I said in my original post, it wasn't until I had the chemo and the cancer came back that I knew for sure chemo wasn't the right choice for me.

    Did you have two separate recurrences of two-spot lung mets, and that's why they did surgery on one recurrence, and radiation on the other? Maybe one of them was too big to irradiate? I often wonder what's going on in those little tumor board meetings they like to have. Do they sit around brainstorming ideas with one another and then go through previous patient records to try and find one exactly like the case they're discussing? If they can't find one, do they take out a giant pin wheel labeled with different treatment options on it, and give it a whirl? It always worried me when the doc's would say, "let me discuss this with the tumor board and get back to you." Yikes! I'm a speciman on a tray! Hahaha!

    Enjoy your evening!

    Krista

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited September 2016 #8

    Oh, my sweet heavens....That

    Oh, my sweet heavens....That's an AMAZING story, Jan! You're even stronger than I initially thought. I don't think you're going anywhere any time soon with a will to live like that!

    I've heard of all those 'alternative treatments' that you mentioned. Someone gave me the eissac tea when i was first diagnosed, but I only took it for a short time. The problem with most 'natural' things, aside from diet, is that they have to be taken consistantly and sometimes for a long period of time before they work. It's just hard to know unless you know someone who's had success on it, and even then that's not necessarily proof it will work for everyone. Our bodies are all very different, and so are our cancers and the way our bodies react to different treatments. I'm lucky that I'm kind of sensitive to things and have a very vocal body. It's possible that a strict, nutrient-rich diet wouldn't even work for everyone. Some people have absorption issues and other things that could prevent them from getting it. It's possible though, that there's at least one thing that will work for someone if they take (or have) the time to experiment on themselves with different methods.

    I tried so many things in the beginning, short of the baking soda cure. I took supplements of every kind, did acupuncture and meditation, used a TCM practitioner, took special enzymes, ate apricot kernels...whether any of these things helped, I can't say for sure. I know for some reason my body didn't become infested with cancer despite all the recurrences and lack of chemo. The only thing I know for sure is that a strict, highly nutritious diet works for me when the cancer's mitosis is low to moderate, and if I stick with the diet for at least a month.

    Others, like John, have had wonderful success with TCM. It might've worked for me, too, if I'd been more disciplined about taking the tea and getting more frequent acupuncture. I could feel the acupuncture working to relax me and release heat from my body, but it was too cost prohibitive for me to do regularly (my dog's insurance will cover acupuncture, but mine won't lol).

    I've never heard of a Mexico treatment that costs that much money!! That definitely sounds like something fishy. I know a couple people who had success with different types of treatments they had in Mexico. One of them did oxygen therapy and completely cured her bone cancer, which is a really impressive feat. That's one of the most difficult cancers to survive. If it was nearly any cancer besides bone, I could've argued, like I do with chemo, that she just may have survived without any kind of treatment, at all. But not with bone cancer. I really believe the treatment she got down there cured her. But then again, that's her. That doesn't mean the treatment would've worked for me. I was all ready to go try it if I had to avoid that ostomy, though! lol.

    I hear you about the butt kicking for not at least giving chemo a try. I felt the exact same way. Like I said in my original post, it wasn't until I had the chemo and the cancer came back that I knew for sure chemo wasn't the right choice for me.

    Did you have two separate recurrences of two-spot lung mets, and that's why they did surgery on one recurrence, and radiation on the other? Maybe one of them was too big to irradiate? I often wonder what's going on in those little tumor board meetings they like to have. Do they sit around brainstorming ideas with one another and then go through previous patient records to try and find one exactly like the case they're discussing? If they can't find one, do they take out a giant pin wheel labeled with different treatment options on it, and give it a whirl? It always worried me when the doc's would say, "let me discuss this with the tumor board and get back to you." Yikes! I'm a speciman on a tray! Hahaha!

    Enjoy your evening!

    Krista

    Sorry, I must have put that

    Sorry, I must have put that wrong about my lung mets. They sent me to see a thoracic surgeon once they found the spots. There were three. He said the odds of me even surviving the surgery was about 30% and he'd take a lobe out. Out of the lung wich had the blood clot in it and already has a dead lobe because of that. Anyway, he said he wouldn't do the surgery if they turned out to be mets and not just scars from them sticking tubes down there and sucking stuff out and all that when I had the clot. So he referred me to the radiation guy. So I didn't have surgery for the spots.

    The radiation guy does this very precise radiation, not at all like the radiation I had before the surgery where they kind of get a big area and don't worry much about being precise. This guy has been doing it for about 5 years and thinks it will be the go to option in the future. He's had a 90% success rate with it. It consisted of just four sessions and there was no burned areas or discomfort at all.

    So before they did it I was sent for a PET scan to see if the spots were mets. Two that were close together they believed were but were not 100% sure. He gave me the option of aiting to see if they grew at all but I chose to just blast them out of there. The third one is a bit away from the others and wouldn't have been radiated because it's too close to my aorta, but it scanned as non cancerous anyway. However, in the follow up ct scan which showed that the two mets had been obliterated he thought the third one might have grown a bit so the cts acn I had last week was to see if that's the case. If it has he'll be concerned but if it wasn't cancer before and the other two might not even have been and I scar badly and they were poking around down in there, I'm thinking the odds are good that it's not a met now. I am concerned, though, that if it's grown I'll have to go through tests to see if it is a met now and I might never know. And I'm not interested in having to have ct scan every 6 months to keep an eye on it. When I was in the hospital so long at one point I had a roommate who was a nurse and she refused a ct scan because she said they're really bad for you. Who knows if cancer will spread due to having a bunch of tests like that?

    So my concern at this point is that it is a met and is untreatable due to it's location but I'm also concerned that it isn't but I'll have to go through a bunch of tsting to find out that it's not or that they still don't know.

    Anyway, I think our options have to fit in with what they can offer wherever we each live. I live near Calgary, Alberta and we have the Tom Baker Cancer Centre there and it's supposed to be excellent. But I've never heard anybody talk about ablation. I wonder if this is something we just don't offer here. Or maybe it's just never come up but is an option. No idea. If I remember I'll ask at the next appointment when I get my results.

    I also wonder if a spot can turn into cancer. Is this something they see sometimes. I just wish it was something that at some point someone could say that it's gone like the flu or a cold. Yeah, I had cancer but I'm all better now.

    Back to the topic of eating well. One of the problems I have is with having an ostomy I have to be very careful. Fruits and vegetables can cause a partial blockage and have for me several times. Last time it was celery. Also, thanks to being able to see what goes through me and into my pouch I know that much of what we eat when it comes to fruit and vegetables don't break down at all. I chew thoroughly but I doubt I'm getting as much nutrition as I think I am.

    Okay, I'll get off of here for the evening. Its a cold fall day today and I think I'm coming down with whatever my co-workers had all last week. A miserable cold/flu thing. So I've been sitting inside on the computer way too long. Thanks for the chats Krista, your thoughts and situation are very interesting.

    Jan

  • kristasplace
    kristasplace Member Posts: 957 Member
    JanJan63 said:

    Sorry, I must have put that

    Sorry, I must have put that wrong about my lung mets. They sent me to see a thoracic surgeon once they found the spots. There were three. He said the odds of me even surviving the surgery was about 30% and he'd take a lobe out. Out of the lung wich had the blood clot in it and already has a dead lobe because of that. Anyway, he said he wouldn't do the surgery if they turned out to be mets and not just scars from them sticking tubes down there and sucking stuff out and all that when I had the clot. So he referred me to the radiation guy. So I didn't have surgery for the spots.

    The radiation guy does this very precise radiation, not at all like the radiation I had before the surgery where they kind of get a big area and don't worry much about being precise. This guy has been doing it for about 5 years and thinks it will be the go to option in the future. He's had a 90% success rate with it. It consisted of just four sessions and there was no burned areas or discomfort at all.

    So before they did it I was sent for a PET scan to see if the spots were mets. Two that were close together they believed were but were not 100% sure. He gave me the option of aiting to see if they grew at all but I chose to just blast them out of there. The third one is a bit away from the others and wouldn't have been radiated because it's too close to my aorta, but it scanned as non cancerous anyway. However, in the follow up ct scan which showed that the two mets had been obliterated he thought the third one might have grown a bit so the cts acn I had last week was to see if that's the case. If it has he'll be concerned but if it wasn't cancer before and the other two might not even have been and I scar badly and they were poking around down in there, I'm thinking the odds are good that it's not a met now. I am concerned, though, that if it's grown I'll have to go through tests to see if it is a met now and I might never know. And I'm not interested in having to have ct scan every 6 months to keep an eye on it. When I was in the hospital so long at one point I had a roommate who was a nurse and she refused a ct scan because she said they're really bad for you. Who knows if cancer will spread due to having a bunch of tests like that?

    So my concern at this point is that it is a met and is untreatable due to it's location but I'm also concerned that it isn't but I'll have to go through a bunch of tsting to find out that it's not or that they still don't know.

    Anyway, I think our options have to fit in with what they can offer wherever we each live. I live near Calgary, Alberta and we have the Tom Baker Cancer Centre there and it's supposed to be excellent. But I've never heard anybody talk about ablation. I wonder if this is something we just don't offer here. Or maybe it's just never come up but is an option. No idea. If I remember I'll ask at the next appointment when I get my results.

    I also wonder if a spot can turn into cancer. Is this something they see sometimes. I just wish it was something that at some point someone could say that it's gone like the flu or a cold. Yeah, I had cancer but I'm all better now.

    Back to the topic of eating well. One of the problems I have is with having an ostomy I have to be very careful. Fruits and vegetables can cause a partial blockage and have for me several times. Last time it was celery. Also, thanks to being able to see what goes through me and into my pouch I know that much of what we eat when it comes to fruit and vegetables don't break down at all. I chew thoroughly but I doubt I'm getting as much nutrition as I think I am.

    Okay, I'll get off of here for the evening. Its a cold fall day today and I think I'm coming down with whatever my co-workers had all last week. A miserable cold/flu thing. So I've been sitting inside on the computer way too long. Thanks for the chats Krista, your thoughts and situation are very interesting.

    Jan

    Thank you, Jan. I have a

    Thank you, Jan. I have a better understanding of what they're trying to do. I know several years ago it was difficult to get treatment in Canada if you were a stage IV colorectal, so I'm glad they have more options now.

    I wonder also if there is cyberknife available where you are? I know all this radiation isn't good for us, but it's best to find something before it becomes an out of control problem. I've gotten PET/CT scans every three to four months for probably seven years now. On top of the 30 radiation treatments aboard the Star Trek Enterprise's medical bay to shrink the primary tumor, I'd probably be riddled with cancer by now if it was really that dangerous. I don't know, maybe not. I eat a lot of sushi/nori! Seaweed is loaded with anti-radiation properties! Haha!

    As far as getting all your nutrition goes, juicing would probably work better for you. It isn't easy with an ostomy OR a stricture, but it's a great way to get tons of nutrients without eating the whole vegetable/fruit. With the raw diet I rarely ate anything that wasn't mulched up and turned into something else. I ate a lot of raw homemade corn chips with salsa and guacamole, hummus, and cold soups like gazpacho. I even made raw brownies and peanut butter cookies. It was sort of fun experimenting with making all the bad foods I couldn't eat into healthy foods that tasted even better.

    I hope that spot comes up negative, but if it doesn't, try not to worry about it; especially don't worry about it now. That stress is useless to you. I'll bet being with your horse is a HUGE stress reliever. I lived on a farm sanctuary when I was first diagnosed, and I used to just sit out in the middle of the pasture with the animals all around and let them come up to me as I caressed them and lost myself in the moment. I so wish I still lived there.

    Good night, Jan!

     

    Krista

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited September 2016 #10

    Thank you, Jan. I have a

    Thank you, Jan. I have a better understanding of what they're trying to do. I know several years ago it was difficult to get treatment in Canada if you were a stage IV colorectal, so I'm glad they have more options now.

    I wonder also if there is cyberknife available where you are? I know all this radiation isn't good for us, but it's best to find something before it becomes an out of control problem. I've gotten PET/CT scans every three to four months for probably seven years now. On top of the 30 radiation treatments aboard the Star Trek Enterprise's medical bay to shrink the primary tumor, I'd probably be riddled with cancer by now if it was really that dangerous. I don't know, maybe not. I eat a lot of sushi/nori! Seaweed is loaded with anti-radiation properties! Haha!

    As far as getting all your nutrition goes, juicing would probably work better for you. It isn't easy with an ostomy OR a stricture, but it's a great way to get tons of nutrients without eating the whole vegetable/fruit. With the raw diet I rarely ate anything that wasn't mulched up and turned into something else. I ate a lot of raw homemade corn chips with salsa and guacamole, hummus, and cold soups like gazpacho. I even made raw brownies and peanut butter cookies. It was sort of fun experimenting with making all the bad foods I couldn't eat into healthy foods that tasted even better.

    I hope that spot comes up negative, but if it doesn't, try not to worry about it; especially don't worry about it now. That stress is useless to you. I'll bet being with your horse is a HUGE stress reliever. I lived on a farm sanctuary when I was first diagnosed, and I used to just sit out in the middle of the pasture with the animals all around and let them come up to me as I caressed them and lost myself in the moment. I so wish I still lived there.

    Good night, Jan!

     

    Krista

    I agree about the animals. My

    I agree about the animals. My horse is my love and my dogs have gotten me through this and dogs we've had in the past have gotten me through other dificult times. My horse came to the hospital when I was in the ICU after the blood clot, did I mention that already? I'd say I have chemo brain but I've always had a poor memory. Now I have an excuse. Our dogs are always near me and our one dog is my shadow. I can't go into another room without him. Or anywhere. We have rescued dogs.

    I looked up the macrobiotic diet after seeing a few posts about it on here last night. It's not something that I think would work for me due to the need for beans and nuts. Not to mention that it sounds unpleasant. Last year I got into brocolli soup as an addiction and I drink clamato juice often. Lots of sodium but decent otherwise and its like a meal. I have that for lunch almost every day. I must have eaten gallons of brocolli soup last year. I made it at home so it was healthy. And the broth of vegetable soup. On the downside I'm a Pepsi addict and drink usually two cans a day. My husband- who drinks more Coke than I drink Pepsi- asked my surgeon when I was first diagnosed if that was an issue. He looked at my husband and asked 'do you think Pepsi gave her cancer?' My husband was taken aback and said that, no, he didn't. My surgeon said 'well, neither do I'. My husband smokes and eats horribly and does everything he shouldn't but went for a full physical last fall including tests and a colonoscopy and nothing came up. Thank God. I made him go. I need him strong and healthy in case things go south for me. And I don't want to be a caregiver for someone with cancer. I think its harder than having it. I don't think I could have been half as strong as he's been. I have a low tolerance for witnessing suffering.

    Jan

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited September 2016 #11
    Book

    And you must tell us the title of your book. I don't think you're touting it, if we ask. 

    That is quite the story, and makes my journey seem like a trip down town. 

    I am interested in juicing, and have a nice juicer sat out in the garage, along with a nice juicing book sat on my shelf. Not going to be saving any lives out there.  

    I am happy you are back here on the forum. It does have a different feel, even since I first started posting back in January '13.  We've lost many of our older posters; I can still name them, all good people. Just like any community, personalities come and go. I think you will find that we are not so confrontational, and certainly accepting of different opinions. 

    I was interesting in your mention of Breatharians. I looked it up. Now that I DO find freaky, but if you were to post and tell me you are 100% behind it, well, I'd say good luck to you. We each have the freedom to express our opinions, politly. 

    As for stress. I was never really stressed, but now I'm the queen of chill.  

    Cancer has changed me, for the better. I like who I am now. I like me for me. Thats a good thing. 

    Keep posting. 

    SUE

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    edited September 2016 #12
    Yes it happens, my chemo didn

    Yes it happens, my chemo didn't do jack.  Two liver resections later, I'm officially cancer free as of today, two years after my last surgery, at the start of Labor Day.  Have faith................................Dave

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #13
    JanJan63 said:

    I agree about the animals. My

    I agree about the animals. My horse is my love and my dogs have gotten me through this and dogs we've had in the past have gotten me through other dificult times. My horse came to the hospital when I was in the ICU after the blood clot, did I mention that already? I'd say I have chemo brain but I've always had a poor memory. Now I have an excuse. Our dogs are always near me and our one dog is my shadow. I can't go into another room without him. Or anywhere. We have rescued dogs.

    I looked up the macrobiotic diet after seeing a few posts about it on here last night. It's not something that I think would work for me due to the need for beans and nuts. Not to mention that it sounds unpleasant. Last year I got into brocolli soup as an addiction and I drink clamato juice often. Lots of sodium but decent otherwise and its like a meal. I have that for lunch almost every day. I must have eaten gallons of brocolli soup last year. I made it at home so it was healthy. And the broth of vegetable soup. On the downside I'm a Pepsi addict and drink usually two cans a day. My husband- who drinks more Coke than I drink Pepsi- asked my surgeon when I was first diagnosed if that was an issue. He looked at my husband and asked 'do you think Pepsi gave her cancer?' My husband was taken aback and said that, no, he didn't. My surgeon said 'well, neither do I'. My husband smokes and eats horribly and does everything he shouldn't but went for a full physical last fall including tests and a colonoscopy and nothing came up. Thank God. I made him go. I need him strong and healthy in case things go south for me. And I don't want to be a caregiver for someone with cancer. I think its harder than having it. I don't think I could have been half as strong as he's been. I have a low tolerance for witnessing suffering.

    Jan

    Yum, broccoli soup!

    That really does sound healthy, and easy on the digestive system.

    My animals have been so important to me during all of this. My 12 year old schnauzer had to be put to sleep the week after I started the first round of chemo, and I thought the grief would kill me. We got a 7 week old pug about a month later, and it was so hard because she ended up being sicker than I was! She had everything from giardia to pneumonia and kennel cough.

    Nonetheless, she came with us to all of my treatments, then we'd come home and have to nebulize her! I still take her to all of my doc appointments and everyone just loves her. She's become quite the showdog when the staff come out to greet her. She'll sing and rub up against everyone affectionately. She's nine now, and not aging well. I don't know what I'm going to do when she leaves me.

    That's so cool you got to bring your horse to the hospital!! They wouldn't allow that around here (I'm in San Diego), though I did see a woman bring in a miniature horse to the infusion center along with a dog. Ironically, that little horse ended up at the sanctuary where I lived a few days later. I guess the woman couldn't care for him anymore. She lived somewhere where she had to keep him gated up in the kitchen! That little horse was MEAN! I had just had abdominal surgery, and every time I went out to feed him, he'd try to kick me right in the stomach! Little stinker.

    Anyway, I totally agree with you that it's harder for the caregiver than it is for the sufferer. They feel even more helpless. I'm glad your husband got a clean bill of health, too. Some people can do whatever the hell they like and never have anything wrong with them!

    Hugs!

    Krista

  • kristasplace
    kristasplace Member Posts: 957 Member
    Trubrit said:

    Book

    And you must tell us the title of your book. I don't think you're touting it, if we ask. 

    That is quite the story, and makes my journey seem like a trip down town. 

    I am interested in juicing, and have a nice juicer sat out in the garage, along with a nice juicing book sat on my shelf. Not going to be saving any lives out there.  

    I am happy you are back here on the forum. It does have a different feel, even since I first started posting back in January '13.  We've lost many of our older posters; I can still name them, all good people. Just like any community, personalities come and go. I think you will find that we are not so confrontational, and certainly accepting of different opinions. 

    I was interesting in your mention of Breatharians. I looked it up. Now that I DO find freaky, but if you were to post and tell me you are 100% behind it, well, I'd say good luck to you. We each have the freedom to express our opinions, politly. 

    As for stress. I was never really stressed, but now I'm the queen of chill.  

    Cancer has changed me, for the better. I like who I am now. I like me for me. Thats a good thing. 

    Keep posting. 

    SUE

    Haha, Sue!

    No, I don't necessarily subscribe to breathtarianism, but I've read stories about people who claim they are 100%; usually they're yogi's, or some sort of monk. I'm not someone who would poo-poo someone's claims (I've seen enough impossible things to believe anything could be possible, especially when belief is strong enough). I do know that breathing exercises do wonders for all kinds of things; from stress relief to pain control, and maybe we can absorb nutrients through our lungs. I don't know if we could get enough to sustain us, though.

    Yes, cancer changes us in remarkable ways. I know some people get bitter and angry and can't see past the implications of it. They only focus on the pointless 'why me?'. Besides the cancer itself, it's brought a lot of good to my life. One of the most important things is that several of my family members got their colonoscopies and a couple of their lives were saved. Nothing felt better than that, and it sort of made all the suffering I've endured, worth it. It's like seeing someone you love suffering and wishing you could take away their pain, but in reverse; you took away their pain before they had a chance to have it.

    Sue, if you want to skim through my book, it's on Amazon under my name. I have a few fiction books on there, too. One of the other wonderufl things cancer gave me was the loss of fear in pursuing my dreams. I was finally able to finish several books, AND get them published!

    Hugs,

    Krista

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #15

    Yes it happens, my chemo didn

    Yes it happens, my chemo didn't do jack.  Two liver resections later, I'm officially cancer free as of today, two years after my last surgery, at the start of Labor Day.  Have faith................................Dave

    Congratulations, Dave!

    I think our first best defense is surgery; especially if there's a lot of cancer, or if it's been growing for a long time. My last met would've been inoperable unless I accepted a permanent ostomy. Thank goodness it died before it got that serious!!

    Krista

  • mykidsmommy
    mykidsmommy Member Posts: 76
    Here I am ! One lung and all!

    Some may remember me from 2009 around then when I was diagnosed with stage 4 colon cancer. I depeneded on these bars to help me navigate such a scary new world. I had a colon resection followed by 12 rounds of the 5 Fu and a few other names I have long since forgotten. I had one tiny spot on my right lung found a year after - we went with RFA - radio frquency abalation to zapp it and I was scanned for five years after. I stopped being scanned in 2013. Then in March of this year a total fluke accidemt brought me to the ER where the mass in my right lung was. I did 4 rounds of chemo which didn't seem to me shrinkiing it, so inn June of the year I had my entire right lung removed. Out with it came the massive colon cancer tumor. Can you believe it? Best news is that 18 lymph nodes they took all came back clean! I am doing very well with just one lung and still in recovery mode but was able to take the kids to Maui this summer and enjoyed every moment. My first scan post surgery showed two hot spots - last week they went in a removed two more areas that had started to grow. Dr belive both areas are spots where the pervious surgery had been but obviously some cells were left behind. So last week I had another sugery to remove those. So here I am recovering again. Much easier this time, than the entire lung removal. Dr says this is not life threatning , which is always good to hear. He says I have options. We meet tomorrow to see what he suggests. I know no one likes chemo -I hate it. Prior to last weeks findings fo the leftovers , my dr had said we could use a watch and wait approach - ofcourse I was all for that. Not sure what he will suggest since the recent developments , I am so very wary of chemo now that I have one lung. Dr told me hismelf that there isnt string enough data on mop-up chemo and if efficasy. So I just don't know. I am starting to thing that colon cancer lung mets are are thing to it's own and don't really follow protocols. 

    I appricated reading of your jouneys. Sometimes I gain support from the board and somtimes I can get really dark thoughts from it. I am sad to be on here again , and said for people reading this who might be stunned that I was 8 years NED and am now dealing with this again. 

    I took very seriously what you wrote about stress realted cancer. I believe in it fully -it's just hard to know what is our genetic predisposition as well. 

    I have secretly wiched I could find the right juicing or diet that would make me feel like I was effecting some change, I am just not sure we have that much control. 

    I pray for peace and comfort for all of us as we navigate these waters. None of us ever thought we would be here - dealing with this. When I first diagnosed at age 32 I didn't even really know what a colon was. 

    Well, that's my story folks. 

    Hoping for better days ahead for all of us. 

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #17
    Congrats!

    I remember you, of course! We were both fairly active on this board back then. I think we were diagnosed around the same time. I'm sorry you're going through it, yet again, but congrats on your long-term survival! For many of us, this is a chronic disease we just have to find a way of getting ahead of.

    My doctor admitted the same thing when I asked him if the chemo would work. That really sent me on a tirade to figure why the hell they were pumping us full of that crap when they didn't even know whether or not it worked?! lol. That was the end of chemo for me.

    I don't know if there's any specific combination of juicing that will cure. I just found what I liked and went with it. Mostly carrots, blueberries, apples, kale, cucumber, lemon with some rind (to drown out the flavor of that nasty kale), sometimes beets, celery, strawberries...pretty much anything I could get my hands on that was organic. The man who created the 'Juiceman' Juicer said he cured his stomach cancer juicing carrots and apples only. I think the point is just to get those healthy cells so healthy, they can easily tell the difference between themselves and the cancer cell, and kill it. There are other ways to get the immune system strong, the raw diet worked great for me, and as difficult as it was, it didn't give me the bathroom issues juicing does.

    I think a big part of success with any dietary change is consistency. I've had to exclude myself from many a family party or dinner out with friends so I could keep myself in-line with my diet; the whole time wondering if it was worth it. It ended up being worth it even more than I'd hoped.

    Now I'm dieting again, but this time it's for weight loss. For me, losing weight is harder than anything. 

    Keep us posted on how you're doing! I hope you realize how strong you are! To be NED that long, and to get through everything you're going through now just proves your body and mind can, and will, beat it back again! Maybe this time for good.

    Hugs,

    Krista

     

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    edited September 2016 #18

    Here I am ! One lung and all!

    Some may remember me from 2009 around then when I was diagnosed with stage 4 colon cancer. I depeneded on these bars to help me navigate such a scary new world. I had a colon resection followed by 12 rounds of the 5 Fu and a few other names I have long since forgotten. I had one tiny spot on my right lung found a year after - we went with RFA - radio frquency abalation to zapp it and I was scanned for five years after. I stopped being scanned in 2013. Then in March of this year a total fluke accidemt brought me to the ER where the mass in my right lung was. I did 4 rounds of chemo which didn't seem to me shrinkiing it, so inn June of the year I had my entire right lung removed. Out with it came the massive colon cancer tumor. Can you believe it? Best news is that 18 lymph nodes they took all came back clean! I am doing very well with just one lung and still in recovery mode but was able to take the kids to Maui this summer and enjoyed every moment. My first scan post surgery showed two hot spots - last week they went in a removed two more areas that had started to grow. Dr belive both areas are spots where the pervious surgery had been but obviously some cells were left behind. So last week I had another sugery to remove those. So here I am recovering again. Much easier this time, than the entire lung removal. Dr says this is not life threatning , which is always good to hear. He says I have options. We meet tomorrow to see what he suggests. I know no one likes chemo -I hate it. Prior to last weeks findings fo the leftovers , my dr had said we could use a watch and wait approach - ofcourse I was all for that. Not sure what he will suggest since the recent developments , I am so very wary of chemo now that I have one lung. Dr told me hismelf that there isnt string enough data on mop-up chemo and if efficasy. So I just don't know. I am starting to thing that colon cancer lung mets are are thing to it's own and don't really follow protocols. 

    I appricated reading of your jouneys. Sometimes I gain support from the board and somtimes I can get really dark thoughts from it. I am sad to be on here again , and said for people reading this who might be stunned that I was 8 years NED and am now dealing with this again. 

    I took very seriously what you wrote about stress realted cancer. I believe in it fully -it's just hard to know what is our genetic predisposition as well. 

    I have secretly wiched I could find the right juicing or diet that would make me feel like I was effecting some change, I am just not sure we have that much control. 

    I pray for peace and comfort for all of us as we navigate these waters. None of us ever thought we would be here - dealing with this. When I first diagnosed at age 32 I didn't even really know what a colon was. 

    Well, that's my story folks. 

    Hoping for better days ahead for all of us. 

    Dang!

    Eight years NED and now back in the race.  You get to join Abrub, who was nine years NED, and is back fighting the fight again, along with a couple of other long-timers.  It just proves to those of us who are still early in our fight, that we mustn't drop the ball as far as keeping vigilant. 

    Good luck with your upcoming appointments. 

    SUE

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    MKM, I'm glad you're on the

    MKM, I'm glad you're on the healing side of things now, and your bouyance is amazing. Like most of us, I imagine, I had to look "colon" up after diagnosis [almost 9ya], and I'm still not very impressed about it. It seems a long tube for poop to hang around in until it's convenient to unload. Thats it to me, one more thing to break, like a silly gadget in a car, power cup holders....................................................Dave

  • ellend
    ellend Member Posts: 109 Member
    edited September 2016 #20
    Believer in diet

    My diagnosis was Stage II and I did the radiation and chemo route before surgery with the goal of shrinking the tumor because the tumor was very close to the anal verge. I also changed my diet radically, eating mostly raw and juicing beets, carrots, ginger, lemons, oranges, apples, etc. I did this because I really wanted to lose some weight before surgery and I read it also might be beneficial for cancer patients.

    When I finished the course and went to the surgeon, the tumor had shrunk to the point where it was all but gone and just an ulcer. It started out being about the size of a walnut. He said it was possible to do transanal surgery rather than the resection. I opted for the resection so they could check the lymph nodes.

    I think the oncologist and surgeon were somewhat surprised that the outcome was so good. The lymph nodes and margins were clean. I don't think they thought the tumor would respond so well, so I credit at least part of it to the diet.

    I had a couple of bouts of infections that had me in the hospital twice at 7 days each. Completely lost my appetite during the hospital stay. Didn't want to even eat clear liquids, the thought of food made me nauseous. My appetite is back but I am not eating nearly as clean as before. I need to get back on it. I am going through mop up chemo now, it is iffy whether I was able to start soon enough after surgery for it to have as much effect on preventing mets. We will have to see... Now that I have the loop iliostomy, I stopped eating a lot of salads and when I do, I make sure to chew really well. I've avoided celery, most nuts, corn and peel any fruit I eat. I need to get back to juicing.

    Sorry for the length of this post, but the upshot is I think positive thinking, lowering stress and improving diet can help.

    Ellen

     

  • kristasplace
    kristasplace Member Posts: 957 Member
    edited September 2016 #21
    So Cool!

    Wow, Ellen! Yes, I have no doubt a optimally healthy diet can kill cancer. It's what I'm using to treat my mets now when they pop up. It seems to only take four-five months if it's a small met. If I were able to do it longer, I'd probably stop getting recurrences. I'll continue to practice with it until I can make it a lifestyle change. Right now my diet is pretty clean; fish, veggies and fruit with no dairy, and I feel really good. It's not optimum, but maybe it will keep the cancer at bay if stress levels remain low.

    Thank you so much for sharing your experience. I'm making it my job to get the word out about diet and cancer, and the more people who do it, the more likely others will try it themselves and get the same, or similar results.

    Hugs,

    Krista