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Scared In Canada

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Carlosdcf
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Subject: Scared in Canada
Date: 02/27/2005
My mother (59) was an active, energetic, life loving individual and all of a sudden she started having pain in her back. She just got told today that she probably has myeloma. It will only be confirmed tomorrow.

I have to tell you, that I am wreck right now because I cannot find too much positive information about this.

I just got onto this site because I had to get out of the hospital for air. Can someone help me? How should I prepare myself? Does she have a chance?
I am so scared.

Thank you,

Carlos
Subject: Canada
Date: 02/28/2005
If you want I will give you some information on what to expect with treatments and clinical trails that I know of. My mother had multiple myeloma she was diagnosed at 57 years old.

Your not alone, there are a network of us out here who have lived with this disease from your stand point.

Sincerely,

Kelly H.
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Caregiver
Brighteyes_52
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Subject: Take One Day at a Time
Date: 02/28/2005
Hi Carlos,

I just registered at this site just so I could answer your message.

My husband was diagnosed with MM in Oct 2003, at that time his blood and urine showed high amounts of protein and a bad M spike. He also had lesions on his skull and was anemic. Now he is in complete remission and working ten hour days so there is hope for your mom.

The first months are scary just having the word cancer associated with someone you love. Life will get back to normal however as you trust God and take each day as it comes.

My husband is being treated on a clinical trial at the Mayo Clinic in Rochester, MN. They started him out on Dexamethazone and Thalidomide and now is only on the Dex.

Good luck with your Mom's treatment. This cancer is one of the ones they are making great strides in for finding a cure.

Keep me posted.
BrightEyes
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Caregiver
Carlosdcf
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Subject: Thank You
Date: 02/28/2005
Bright Eyes,

Thank you so much. Just reading your email brought tears to my eyes as I am still having a hard time dealing. They told my mum today and she was in shock...we were just reminiscing about the great times that my single mother brought up 3 'wonderful' boys. She is my hero.

Your email gives me lots of hope. I really do not want to say right now, but wanted to respond quickly to show my appreciation for your response.

When I can type again without seeing a blurry screen, I will write a proper thank you.

Sincerely,

Carlos
Subject: Hope
Date: 03/02/2005
Hi Carlos. I'm sorry to hear about your mother diagnose. But you have to have hope, no matter what. Let me tell you what happened to me last year. My mother who's 80 years old noticed in April 2004 a couple of tiny little bumps in the top of her head. She told me "sonny, i feel a little pimple here, feel it". I thought it was a common scalp irritation and told her "it's just some irritation, I've told you tons of times to use an expensive shampoo, stop using the cheapy ones". By coincidence, she had a doctor's appointment a week later and her doctor send her to the dermatology to look into the bumps. We both postponed the specialist' appointment for months because we thought it was nothing serious. Well, it was angiosarcoma, we were told, and by then the cancer had expanded to other parts of the head and neck, limph nodes involved. Doctors in USA told us there was nothing that could be done, that that type of cancer is one of the worst ones since its survival rate is very poor, and in people her age, mortality rate was 98%. She was given from 3 to 6 months to live. I was devastated. Guilt took over me. What if I had taken her in April directly to the specialist for diagnosis and the cancer hadn't spread so much? What if we hadn't postponed the appointment with the dermatologist? She was going to die and all was my fault! I cried alone in my home for all the years I never cried in my whole life. The last time I remember crying was when I was 16. I cried while driving in the freeways. I cried at work. I cried in bed. I cried when I was eating and my tears would mix with the food, I never thought I would be eating my own tears. I always thought, for a reason I don't know, that my mother would live to 91 years old. Suddenly, life was cheating me of a dozen years of her. I refused to accept it and took her to Mexico for diagnoses that were as dismal as those we had: not much could be done, she would die soon. I started having unilateral conversations with God. While crying driving in my car or sitting on my bed or other places, I would ask him, beg him, to let me enjoy her more years. I would ask him that from the bottom of my heart, with an honesty, sincerity and modesty rare in me. And I had the rare sensation (or hope) that he was listening and that, somehow, he will feel pity for me and show mercy spearing my mother's life. He did listen. He felt compassion for so many tears and he made it possible: now my mother is one of the few people on record, over 80 years old, who survived expanded angiosarcoma. She gave her permission to have the photo record that shows the progression and elimination of her cancer to go into medicine school books. Her cancer it's in full remission but if it lasts in remission 10 years, then a 91-year lifespan can be considered, by any means, a long one. I don't know much about your mother' type of cancer but I will tell you this: she has to boost her immune system before and after any treatment. Cancer doctors wont even talk about immune system, it will be your homework to do the research over the internet and find what is best for her. I will only give you info in what I gave and currently give to my mother to be a cancer survivor. I don't know if they work for all cancers but they worked for my mother:
1.- Stop all sugar intake immediately. Cancer cells feed on sugar. No artificial sweeteners either because they contain chemicals that are carcinogenic: nutrasweet has aspartame, sweet'nlow has saccarin and splenda has sucralose (which is not sucrose). Instead, my mother takes Stevia: a natural sweetener that is made from a wild plant found in Paraguay. Your local natural food store sells it or order it from the internet. In google.com write the word Stevia and do the research.
2.- Avoid all meat. If not possible, then compromise in at least avoid red meat and eat turkey, chicken or fish instead. Eat lots of vegetables, specially greens and all kind of sprouts, lightly steamed vegetables. Lots of greens. Lots of vegetables. Lots.
3.- Take one capsule of Modified Citrus Pectin with each meal. There are many brands but the brand Pectasol is the only with that has done research with humans with great results.
4.- Take twice a day 2 oz of Flor Essence liquid tea mixed with 2 oz of water first in the morning and before bed at night. There are many brands but the brand Flora is the better known.
5.- Fortify the immune system: cancer is like AIDS: cancer cells invade healthy cells and the immune system does not attack the enemy because it's fooled into accepting it as a guest. Chemotherapy and radiation are a heavy blow to the immune system, so fortify it. Help the immune system help you: 1 daily pill (or 2) of a multivitamin complex, found at your local GNC or walgreens. 1 daily pill of Sublingual B-12 pill. I daily dose by mouth of liquid B-12 dropper which equals to one regular painful shot of B-12 vitamin.
6.- Aloe-vera shakes: fresh aloe vera (peel it off for better taste) mixed with your juice of choice right before eating breakfast. Nature is very generous with us, it has given us this wonderful, abundant and miraculous desert plant, take advantage of it.
7.- A teaspoon or two of Flax Seed Oil, around or after noon. You can also buy it in powder form or even in powder capsules. In the powder form, the Canadian Flax Oil Seed mixed with cacti ("Linaza Canadiense con Nopal") tastes very good actualy and is very well known in Mexico. You can buy it at your local natural food store or over the internet.
8.- One daily teaspoon of Birm, a concoction made from the amazonian plant Dulcamara. It is made in Ecuador and not available in USA, so it's expensive. One little bottle wich lasts one month costs $110 and can be bought at www.birm.com. In Latin America you can find countless stories of cancer victims cured by this medicine, but you can not wait for the FDA to approve it because it might take years.
9.- Acupuncture: visit a good local registered acupuncturist on a weekly basis. It helps relieve the pain that conventional cancer treatments cause.
10.- One weekly full body massage from an experienced masseuse/masseur: Mind and body are interconnected in ways we usually don't pay attention to but when a full battle is launched against the monster that cancer is, every single muscle of the body is needed to win each battle, and then the war.
10.- She needs to go to church and be in peace with God. If not religious, then Meditate. Expect the best and be prepared for the worst. Believe in miracles. If not religious, believe in the power of the mind and the positive forces of the universe.
I always believe that good things happen to good people and that when we do good, then good things will happen to us. I really believe that. When I was 9 years old my mother gave me a big O poster to hang in my bedroom. It's now in my home so I can look at it every day. Its a prayer that St. Francis of Assisi wrote in 1526 and reads in Spanish:
"SeƱor, hazme instrumento de tu voluntad. Que donde haya odio siembre yo Amor, donde haya sombras: Luz, donde haya tristeza: Alegria, donde hay desaliento: Esperanza, donde haya duda: Fe. Porque dando es como recibimos. Perdonando es como tu nos perdonas. Y muriendo en ti, es como nacemos a la Vida Eterna".
Caregiver
Caregiver
Carlosdcf
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Subject: Thank You,
Date: 03/02/2005
Ramon,

I think that was one of the best letters I have read in a long time. I broke down crying (sobbing), twice while I was reading. I am crying in bed, in the shower, in front of the computer. It's bad. My mom is my hero.

The advice you gave me is very detailed and amazing. I am going to print it out and try to follow every step.

The problem is that my mom cannot leave the hospital anytime soon. The cancer has affected her spine, and that has to heal before she can leave. Chemotherapy(?) starts tomorrow.

As for God, I do believe, although my faith is receiving a test right now. When I first heard, I prayed that it could be transferred to me. However great a person I have turned out to be, I am still the student and my mom the teacher. A few times in this world the student will pass the teacher, but not in this case - She is such a wonderful person to so many people.

Thank you for your words. I have trouble leaving the hospital at night and every morning I wake up in my tears. I am really questioning what we are all doing here if one of the strongest, caring people in this universe will die just leaving me here with a bunch of memories. I have to carry on living in this world until my time comes? Nobody is closer to me than my mom, by far.

Sorry for the babbling, my mind is very close to scrambled eggs right now.

Thanks again,

Carlos
Subject: Canada mm
Date: 04/14/2005
Dear Carlos,
My mom was diagnosed last year, just a month before her 50th birthday. I'm 24 years old and my younger sister is 17. I was a MESS when i first found out...like your mom, my mother is my life. We live in Toronto, she did an autologous transplant last October at Princess Margaret...it went smoothly, for all those who are scared, don't be. I read all the harsh tales and we were terrified of it, but luckily there was minimal trauma, lots of sleeping and restlessness when awake, some vomitting but under control, just be careful with germs and oral hygeine and try to make some homemade food, hospital food makes a healthy person want to barf nevermind a patient!
Unfortunately, last month after only 5 months, the Myeloma has come back, this time as soft tissue tumours in her breast and pelvis.
I am devastated and shocked, she is in hospital right now and will be staring velcade soon.

It is horrible, especially that my mother is so young. I think life would be like a dark enless tunnel or prison, not sure how i would carry on. But there's no use in thinking of it now, there are too many days to live and appreciate. There are too many good moments to have and cherish. I will deal if i must, later. Just helps to know that i'm not alone...keep your faith, and pray for the wisdom to know that God's plans make sense even if it doesn't appear so...

All the best,

Melissa
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