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I have debated for months writing this diary. It is my response, in a way, to a diary from months ago, My Cancer Came Back. I read her entry with such despair, as I do all cancer stories. It is a terrible illness, one that leads to so much pain and destruction. I know.

Updated   I wrote this dairy after many months of thought. Ultimately I thought it might help someone. That's it, I will help if I can. It may be ignored, but maybe someone will see, and think. I will go watch Jon Stewart now, I can, I am still alive.

I was diagnosed with Lymphoma, B-Cell, fast growing on Friday April 13th, 2007. Two years later, on April 13th again, I was diagnosed for the 4th times in two years. It started with a small lump in the back of my mouth and it grew to a huge swelling in my cheek and jaw.

After being sent to an ENT specialist who waited 6 weeks before doing a biopsy ("No,no, I don't think it's Lymphoma") while it kept growing,they found Lymphoma. That started my two year decent into hell with cancer.

I had cancer 4 times in two years, all Lymphoma. First in my jaw. Next it had moved to my brain 4 months later. Then to my eyes (pretty rare) and finally to my spine (spinal tap)and thus the fluid around my brain.

I had everything oncologists (doesn't that word just send shivers up your spine)had to offer. Two separate rounds of chemo, 17 times. The first, 6 standard rounds for my jaw spending 6-9 hours a day. Then 9 hospital stays for a different type of chemo later for the brain. While in the hospital I had seizures which nearly killed me and left the right side of my body 80% useless. I have that back now. Then radiation over a year ago on my brain, I could not hear at all. I had two separate eye surgeries, to remove the Lymphoma in the fluid in my eyes. I got vertigo a year ago last February, I still have that. They were not sure but thought that and the hearing problem were a result of a tumor near my spinal column.

This is just a small portion of what I went though. I started saying no early on when they wanted to do radiation on my jaw just so it would not come back there. The results of the radiation would have been devastating and permanent. Loss of taste buds, jaw bone breaking down and my teeth rotting and coming out. I said no. My oncologist was not happy. More chemo.

And I continued to question over those two years, more and more until finally I said no more.

On June 1st last year my brain oncologist told my of the spinal tap. He wanted to put a port in my brain (I already had 2 in my chest) and do more chemo. This was not a "cure" but if I did nothing, and he counted on his fingers, I would be dead by October.

So I said no more and prepared to die. I had changed so much and was at peace with my death. I would hopefully have a lovely summer with my family but I could endure no more.

Then I went to the health food store to get Vit D. A high school friend who owned the store saw me, did not recognize me (I had no hair from the radiation and looked horrible. He gave me a book, Outsmart You Cancer by Tayna Pierce. That day he saved my life.

I have done many alternative things that have helped me through this from the beginning. I have people who do acupuncture, Reiki, the Alexander Method and Protocel, which I found in the book. It has rid me of my cancer.

Over a year later I am thriving and still alive. I will never be like I was before cancer, they did too much damage, but the cancer is gone. I still have vertigo, but I am working on that. I take no medications now, and believe me I had dozens. I can sleep again at night. I still get very tired some days, my energy level is down, but I am alive.

I think why I am writing this is because I have seen how bad our health system is. We need to start taking responsibility for our own health, asking questions, looking for information, finding alternatives. I thought I was doing everything right, never smoked, exercised, kept my weight down, didn't eat meat, always organic. But we Americans are killing ourselves with obesity, smoking, diabetes, heart problems which have all risen.We need big changes in how we look at health and ourselves

I will never do traditional cancer treatments. Billions and billions are being spent on cancer treat (they spent well over a half a million on me) and the best it seems they can come up with is poison and destruction.

The endless bills have stopped coming. The doctors visits (every week) have stopped. I now have my life back. I learned hard lessons, but came out a better person. In spite of everything I worked for health care reform. If I had not had health insurance I would be dead. I would not have survived to the point where I could find something else. All people do not need to worry about losing everything while they are sick. But we need to change this system

And,in my better months (and before my cancer) I helped elect Sherrod Brown and Barack Obama and hope to help Dems here in Ohio this fall.

And maybe this diary will be ignored, I hope not. Please do not write and tell me I'm crazy and dangerous. This is just my story, hopefully you will find it helpful. That's my goal. To help and to start making changes. I am not sure how, but we need to, desperately.

Originally posted to Matglaze on Thu Jun 24, 2010 at 05:46 AM PDT.

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Comment Preferences

  •  This is a Great Diary (14+ / 0-)

    One question:

    Did you have to pay for your alternative therapies separately, yourself?

    Did your insurance pick up any of it?

    Thanks.

    ::
    The Pluto Chronicles. You want reality? You can't handle reality!

    by Pluto on Thu Jun 24, 2010 at 05:57:18 AM PDT

  •  So exactly what was it that you think cured the (2+ / 0-)
    Recommended by:
    denig, Ebby

    cancer?

  •  This diary should not be ignored (15+ / 0-)

    I certainly hope it isn't. It was very painful for me to read because it brought back my own horrific memories as a cancer survivor, although my experiences paled in comparison to yours.

    Tipped and rec'ced. And most importantly HUGS

  •  The tragic fact is that medical science, (15+ / 0-)

    despite countless "breakthroughs", treats cancer with some variation of cutting, burning or poisoning.
    Over 50 years (to my personal knowledge) and billions and billions of dollars have been spent and medical science can still only cut, burn or poison.

    All of this costly, non-productive research still cannot solve the basic question of why cancer cells reproduce without restraint. All of this and no funding source asks why after all of these years and multi-billion expenditure we still don't have a cancer cure.

    •  Agreed. On its face it seems barbaric (8+ / 0-)

      to be treating people with radiation and toxic chemicals.  That was my reaction eleven years ago when a 30 year old fellow worker with lymphoma was going through it all.  And it didn't work.  She died.    Last year I lost a second colleague to lymphoma- he was 47.  
      I'm glad to read this diary of someone beating it, because I have been resigned to it being a death sentence now when I hear some has it.

  •  My mother is a cancer survivor. (13+ / 0-)

    They had to remove both breasts and a lot of lymph tissue.  But she has had no recurrence of the breast cancer.  (About 1980)

    They removed a few pre-cancerous-looking moles. (About 2000-2005, various times.)

    They removed the rest of the right lymph node under her arm. (2009)

    All of this without chemo or radiation.  

    I know of only one person who survived chemotherapy.  The other 15 people I know who had cancer and used radiation or chemotherapy all had miserable lives until they died anyway.

    My mother and I agree:  If the cancer can't be removed surgically, no chemo and no radiation.  We will take a Patient-Controlled Anesthesia machine filled with Demerol and sit on the back porch, reading and doing counted cross stitch until we stop breathing.  I will not agree to chemo or radiation unless there is some really impressive breakthrough, and I see ALL of the peer-reviewed literature and talk to at least 10 5-year survivors.

    To say that my fate is not tied to your fate is like saying, "Your end of the boat is sinking."--Hugh Downs

    by Dar Nirron on Thu Jun 24, 2010 at 06:49:15 AM PDT

    •  Some people do fine (10+ / 0-)

      My father completed a course of chemo for lymphoma last year, and is now feeling great. I think, if ever faced with the decision, I want to know what the expected gain from a course of treatment is. If there is a reasonable chance of a return to some degree of health (as he experienced) it would be worth it. If it's likely to buy me 9 additional months of life with increasing misery I'd rather not. From others I have known I think too often doctors push for extreme treatment just to prolong life by a matter of months. I'm a quality over quantity voter on that issue.

      Legalism: strict conformity to the letter of the law rather than its spirit

      by Catte Nappe on Thu Jun 24, 2010 at 11:28:13 AM PDT

      [ Parent ]

    •  My Grandmother's View (8+ / 0-)

      Her first bout of cancer was colon cancer in 1959.

      Then she had first bout of breast cancer around 1968.  She wrote me a letter from cancer clinic in July 1974, waiting to hear the diagnosis while watching the House Judiciary Committee vote to impeach Nixon, and yes, she had breast cancer again and another mastectomy & more chemo and radiation.  

      Later that year she had bone cancer, and I cried because she wouldn't live to see her great granddaughter.  But she did. She lived for 5 more years.  It was the pancreatic cancer that finally got her.  

      She felt honored to try every experimental drug/therapy because she wanted to help those who followed.

      As a cancer survivor myself, I made my peace and was prepared to embrace death.  My cancer survivor support group was extraordinary.  Some were magnificent fighters who lost the battle too quickly; others fought and won.  

       

  •  good for you (9+ / 0-)

    Taking control of your life feels good. Glad it's working for you. The health care system has failed so many of us in so many ways ... today a report: US health care worst of seven industrialized countries.

    " 'In this world, Elwood, you must be oh so smart or oh so pleasant.' Well, for years I was smart. I recommend pleasant. You may quote me." Elwood P. Dowd

    by paulbkk on Thu Jun 24, 2010 at 06:50:18 AM PDT

  •  My wife (15+ / 0-)

    contracted lung cancer three years ago. She had surgery that removed most of one lung, and four months of chemo. She came through the chemo with flying colors. No hair loss, no nausea (medical cannabis works), gained five pounds. She uses no oxygen ever, and returned to work six months after her diagnosis.

    So far so good.

    I believe early detection was the key for her. Our family doctor sent her for a chest x-ray basically on a hunch. The guy is a genius in my book.

    "A lie is not the other side of a story; it's just a lie."

    by happy camper on Thu Jun 24, 2010 at 07:33:10 AM PDT

  •  Can I ask a question? (7+ / 0-)

    When you talked about the cancer starting in your mouth and jaw, it reminded me of a worrisome feeling I've been having lately.  It feels like there's something in my throat, or that my throat is closing up.  Here's the thing, though - it's worse on some days than others.  To the point that on some days, I don't feel it at all.  

    When your cancer was first developing, did you feel it come and go, or seem to get bigger and smaller?  Or did it just get bigger?  I've looked all over the internet to see if tumors swell and recede day to day, but haven't been able to find out.  Maybe the question is just too obvious.

    (-9.62/-6.77) "If you don't lie down in front of the door, you're less likely to get used as a doormat" (Rachel Maddow 9-2-09).

    by revelwoodie on Thu Jun 24, 2010 at 09:27:22 AM PDT

    •  Have you considered allergies (5+ / 0-)
      Recommended by:
      wader, gmb, yella dawg, revelwoodie, ozarkspark

      as a source of your problems? My throat is the first place I feel my allergies, and sometimes it feels like I have a hair in my throat or a weird little tickle or like my throat's swollen. The worse on some days than others is the thing that made me think allergies.

      Good luck figuring it out.

      Interested in identifying and eating wild plants? Check out my foraging diaries.

      by wide eyed lib on Thu Jun 24, 2010 at 09:30:05 AM PDT

      [ Parent ]

    •  No, it got larger (9+ / 0-)

      It was small and continued to grow, rapidly. That is the problem with cancer, we really don't know if it cancer, if it's something else, if it's nothing. It is an inexact science. From the time I first went to the doctor until it was diagnosed it was 8 weeks. No body thought it was cancer.

    •  I suggest a doctors visit, even emerg if necessar (6+ / 0-)

      just to have someone actually look at your mouth and throat. Is there a free clinic near you?

      More because the chances of it being cancer are low yet the worry will be high until you know.  Also may not be a tumor receding or swelling but an area that it or a cyst are on causing inflammation and then fighting it.  The trachea and the esophogus are actually really small, they cap of a pen fits it perfectly which is why they now have put holes in the caps so that there is a chance of a little air getting through b4 medical help arrives.  It is easy to see how even a tiny cyst might be irritating

      I am lucky in Canada, i had a one off very odd temple headache, limited to a half inch around in the dip of the temple only and pressure on the left eye.  Doctor says..could be migraine equivalent (not a migraine but same type of pain) and probably is in 799 cases out of 800 but lets send you for a cat scan to be sure.   Felt good to know that I can go for one just in case.

      Hope you can get an answer

      Barack Obama: "These guys want to be paid like rock stars when all they're doing is lip-synching capitalism." may21, 2010

      by vc2 on Thu Jun 24, 2010 at 09:48:04 AM PDT

      [ Parent ]

    •  You're actually describing something I experience (1+ / 0-)
      Recommended by:
      Renee

      often, from a combination of allergens to which I am sensitive, coupled with my fibromyalgia symptoms.  It's affecting me right now, actually.

      Maybe not a bad idea to see an Internist or equivalent.

      "So, please stay where you are. Don't move and don't panic. Don't take off your shoes! Jobs is on the way."

      by wader on Thu Jun 24, 2010 at 10:04:44 PM PDT

      [ Parent ]

  •  I tipped and recommended this diary. (11+ / 0-)

    I have had cancer as well, although my experience was very mild. I am also the daughter of a nonagenarian who has been overtreated by traditional medicine. I think that an important part of true health care reform is a honest discussion about what works and what does not.

  •  Great, great diary! (6+ / 0-)

    Thanks for telling your story. I'm so glad for you that you are now cancer free!

    A balance between traditional cancer treatments and alternative treatments is indeed called for, and thank you for discussing the balance you made.

    I've watched friends and relatives suffer through brutal cancer treatments that eventually weakened them and hastened their deaths. And I've watched a few who found a balance between "traditional treatment" and nutrition, and changing lifestyle, with some of the alternative approaches as well. Those who rejected "traditional"  regained quality of life and some of them are still alive.

    Not that all alternative medicine is equal, but you clearly have made the correct choices for yourself.

    Traditional medical care of more and more treatment has to be modified.

    Slavery is the legal fiction that a person is property. Corporate personhood is the legal fiction that property is a person. -Jan Edwards

    by SoCalSal on Thu Jun 24, 2010 at 10:22:48 AM PDT

  •  You've Been Rescued (4+ / 0-)
    Recommended by:
    Renee, Christin, dejavu, princesspat

    "What the cynics fail to understand is that the ground has shifted beneath them"

    by ItsJessMe on Thu Jun 24, 2010 at 08:52:34 PM PDT

  •  thank you for sharing this.... (1+ / 0-)
    Recommended by:
    Renee

    I read every word, and am so glad to read
    you are doing well.

    :-)

    "Toleration is the greatest gift of the mind; it requires the same effort of the brain that it takes to balance oneself on a bicycle." -Helen Keller

    by ridemybike on Thu Jun 24, 2010 at 09:52:21 PM PDT

  •  Your diary (1+ / 0-)
    Recommended by:
    Renee

    is much appreciated, Matglaze.  Thank you

  •  I too am a survivor (2+ / 0-)
    Recommended by:
    Renee, Sylv

    Stage D colon cancer, 40% five year survival. Now twenty five years later still cancer free. I am on of the lucky ones.

    "let's talk about that"

    by VClib on Thu Jun 24, 2010 at 10:49:10 PM PDT

  •  Great diary! Thank you. (1+ / 0-)
    Recommended by:
    Renee
  •  the vast majority of healthcare costs (1+ / 0-)
    Recommended by:
    Sylv

    are the result of things that are largely beyond our personal control: genetics, workplace and home environment, accidents, and so on.  Although it is certainly a great policy to do everything you can to promote personal health, the notion that vast amounts of healthcare costs come from irresponsible people which is promoted mostly from the right, is simply disingenuous, at best, and mean-spirited, at worst.

    I wish you all the best!

    •  No, I am talking about diabetes and heart problem (0+ / 0-)

      Can you honestly say that the explosion in diabetes and obesity is due to genetics, workplace,home environment and so on? I truly believe not and a am about as far from the right as you can get. We are eating far to much crap and not doing anything to get ourselves in shape. I think obesity and diabetes along with heart disease are so preventable in so many people and we just keep doing things that will make us sick.
      Yes, many things are out of our control, I really have no idea why I got cancer but our dietary habits are and we don't do much about that. And again, I am NOT right wing, just someone who has seen the worst of our health care system .

  •  I am glad you are alive (0+ / 0-)

    and feeling better each day, and found alternative treatments that work for you.  I agree that being informed is truly important.

    I have an uncle who had colon cancer and beat it.  I remember that he wore a sort of necklace around his neck that was a drip system, feeding in chemo (?) at a constant low rate to fight his cancer.  He also had a doctor that advised drastic dietary changes.  He was on an organic diet, I know he got a juicer and had carrot juice daily.  He also has a loving wife and family who were there throughout his ordeal to make his life as easy and comfortable as possible.

    My mother has a lump in one breast that just got biopsied.  We will find out the results next week, and are all holding our breath and thinking positive thoughts.

    Thank you for sharing your own story.  I hesitate to say you were one of the lucky ones, considering the procedures you had to endure.  But I'm glad you were able to endure and come out stronger on the other side :)

    •  Something else on diet (0+ / 0-)

      No one ever talked to me about diet. Never. The only time I was supposed to not eat something was when my white blood count was low after chemo and I could not eat fruits and vegs. No one ever, not all the doctors I saw talked to me about what I ate. That in it's self was amazing.

  •  So happy to hear how you've done so well! (0+ / 0-)

    I just lost a younger sister to cancer. She was only 46 and a super fantastic person. We are missing her so much. She had one of the worst forms of cancer, a brain cancer called glioblastoma multiforma. A lot of your story rings familiar bells. Treatments worse than the disease and seizures were all a part of her suffering. She got to stay with us over 2 years compared with the months that the statistics gave her at first and was able to talk and make us laugh up until the very last few days.

    I'm proud of you for choosing to say to no to treatments when you know you have had enough. It is so hard to make decisions when they are always telling you, pretty much, "do this or you'll die real fast."

    As a fellow Ohioan (from Lorain, though an expat now living in Japan) I am glad to have you on my side in the up-coming election.

    Hang tough and glad to hear you are whooping the ass of that cancer.

    Obama: like going to a Mensa meeting after eight years of being trapped in the Flat Earth Society (Weiss -Center for American Progress)

    by PoPEar on Fri Jun 25, 2010 at 01:28:11 AM PDT

    •  my sister in law was just diagnosed with this (0+ / 0-)

      a couple of months ago, after blacking out and having suffered headaches for a long time. She is unemployed and my brother too has been unemployed for a long time due to the aftereffects of surgery for pancreatitis.
      I kno she is going to die although the medical people have been feeding her false hope. She's so young (early 40s) that I understand why. She's had surgery and they took out a lot but the thing had tendrils and has spread further. Now it's radiation and chemo. She lives in a rural area where alternative treatments are unavailable, and of course has no money to pay for them and can no longer drive due to seizures anyay. I don't think there's anything out there that ill save her life, but I think there probably are alternative treatments that could make what she has left bearable.

      Political Compass says: -8.88, -8.67
      "We never sold out cos no one would buy."--J Neo Marvin

      by expatyank on Fri Jun 25, 2010 at 05:07:55 AM PDT

      [ Parent ]

    •  That was Ted Kennedy's wasn't it? (0+ / 0-)

      That is one of the worst. I did not have that but I know the traditional survival rates are nil. I see so many like your sister who are wonderful people going through things they could never imagine, and treatments that are worse than the disease. I choose to finally say no because for the first time I had time. Each time before it was having to do something immediately. I am so sorry for your loss, it must seem monumental. She knows she was loved. That's the one thin about cancer, you have time to let people know how much you love them.

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