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Monday, July 18, 2011

Quality vs Quantity?

When I read Alicia's blog post, all I could think about is that I wanted to share it. Her post is a great read for anyone currently battling breast cancer as well as for the newly diagnosed.  In my blog I strive to empower women with the information and strength to have a more successful cancer journey.  Alli adds intense incite into the process, so I hope you will benefit from her experiences and candidness.  Thank you Alli for sharing your post.  To read more from Alli’s blog, please visit: http://alli-lifeintransition.blogspot.com/2011/07/quality-vs-quantity.html

Quality vs Quantity?

The day you receive the diagnosis , you have Breast Cancer life after that is never the same. Everyone takes the news differently. Some fall apart, others will claim the news was a wake up call inspiring them to change their lives.  Others like my self pure fear at the unknown outcome, never being certain how things will be in our futures, how long that future will be and if we even have one! You read everything you can get your hands on your particular cancer. You want to know statistics cure rates how long will I live, what the different stages signify..Your mind gets overloaded on Breast Cancer information, and it still isn't enough. If it were possible you would read every single detailed  paper written on your type.

You begin your roller coaster ride of treatments beginning with surgery, you have your breasts removed told that there was no other option especially if there is lymph node involvement.

Chemo is definitely not fun in fact it is the worst shock your body endures. Having poison pumped through your veins. You hope that the cancer is destroyed, in the process the treatment doesn't kill you first. You still do it because Chemo is the only "REAL" hope that will keep the cancer from spreading. Or so you are led to believe. Of course there is radiation but many times radiation is over used and not enough clarity is given before you begin treatment . How it will burn your skin leaving blisters as though you sat out far too long in the burning sun. Of course we are told repeatedly to avoid the sun because it can cause Cancer well so can being over radiated. One of my dearest friends is proof positive having developed a Secondary Cancer on her Clavical a direct cause from over radiation. I decided to pass on that one!

You do what you are told for these months of treatments. You are told you will be fine,  you expect to bounce back almost immediately. Ok you lose your hair, but no one mentioned your fingernails coming off or the other side effects like Neuropathy that may become a permanent condition of Nerve damage from Chemo.. You will pick everything up from the point you stopped.  It doesn't quite work that way. In fact you are lucky if you are able to do a small amount of what you used to do...You are not told of the  amount of fatigue you experience.The ups and downs....

We are told if we are Estrogen positive there are "Wonder" drugs that will help in the prevention of a recurrence.  We take them . Then it starts, the side effects kick in. You are going to be Superwoman, you can take a little pain but the little pain turns into a bigger pain  until it becomes so debilitating you can barely stand. Climbing out of bed putting pressure on your ankles, trying to stand up and walk expends so much energy because all you can feel at that moment is  intense pain shooting through your bones...  You tell your Oncologist he looks at you as though you are the only one having issues.that it is uncommon, you almost believe him .. You try a second drug  a third. One has different side effects that affects you differently from the others. You try another one it is in the same family as the first, you are told in advance you may have the same side effects. OK so why prescribe it? Essentially all these drugs and treatments are to buy you more time. Once you have gone through treatments  you  come to the realization there is no cure for Cancer. It is still there dormant somewhere in your body..

Your thoughts turn to a different place. One that you would not even consider had you not had cancer.  It's a question a cancer patient will ask himself over and over again. We don't dare tell our loved ones - at least not yet. Is it the Quantity of your life that counts Or is it the Quality?

When you know your options are limited.   Your bones and joints are so painful. The base of your spine feels like someone dropped kicked you.  Your knees ache so badly you feel like a ninety year old.You even wonder in some circumstances if death would be kinder option  than going through endless days of hurting.

Of course we want to live!!! This is such a complicated situation..  However if the quality of your life is reduced to living in constant pain, do you continue with the drug therapy or do you stop consider the QUALITY of your life? Enjoy being pain free for what ever time?

Right now it is still merely speculative  that without these drugs  we are leaving ourselves wide open to something worse.  This is only because we are told this by our Oncologist. They themselves don't know. I have asked my Oncologist several times each visit can you guarantee that I will not get a secondary cancer by taking these drugs??  Response:: "There are no guarantees"! Then why are you scaring women to death?? We are terrified if we don't take them fearing that ugly "C" word!

I have been doing a considerable amount of reading various  reputable  web sites where women have stopped taking Arimidex, Femara, Tamoxifen, several have surpassed living past the time  key they were given.They are living a life without pain..

Could it be with a change in diet, habit include  peaceful thinking, low impact exercising meditation could be an answer for some of us?

Of course you will have those opposed simply on religious grounds that it is not our choice to make.  They will oppose you every step of the way. Quantifying your life,  only GOD has the right to decide how long we live. What if you are an Atheist?

 Before being diagnosed, before all your treatments, this question would never even come up in a conversation or  in your own thoughts.....

Cancer patients are always going through insurmountable guilt. You feel guilty for becoming ill. You feel guilty because you can not maintain the way you were before Cancer picked you as  a home.  You feel guilty because you feel that you failed the expectations of others, you should be positive, positivity will  give you a new lease on life. As long as you keep smiling......You feel guilty because sometimes  that's impossible....

 We are facing the biggest dilemma of our lives .It will directly impact  everyone within our close circle of family and friends.  Is it selfish to stop taking something that causes a body so much discomfort?  Is it  wrong to want to enjoy our lives relatively pain free even though we know our time may be limited?
Enjoy a quality of life you may not have otherwise?


Someone went so far in saying stopping your meds  is a form of self-induced Euthanasia..Again we do not have scientific proof or otherwise taking them or not will make any difference No Guarantees remember!!

It is so difficult to try and come to terms with. Along with being complicated. You have the tendency to flip flop back and forth..
In as much as we might not want to admit it, I'm sure I'm not the only one who has thought about this.

Funny thing is, there are hundreds of us if not thousands  on these drugs who are suffering  from severe pain.

I can't understand how Oncologists can be so ignorant en mass....dismissing their patients nearly accusing them of be hyperchondriac yet have no qualms prescribing narcotics to suppress the very pain many claim  is non existent.

Again I am going to harp on the millions of dollars that are collected through Fundraising  . Why are  some of these funds not directed towards finding a  way to alleviate the  side effects?

Or are we as women that expendable?

Elyn Jacobs
elynjacobs.blogspot.com
**********************************************************
Elyn Jacobs is President of Elyn Jacobs Consulting, Inc. and a breast cancer survivor. She empowers women diagnosed with cancer to navigate the process of treatment and care, and she educates about how to prevent recurrence and new cancers. She is passionate about helping others get past their cancer and into a cancer-free life.

Wednesday, July 13, 2011

Why the Race is going in the Wrong Direction

Much progress has been made in Breast Cancer awareness. However, being aware of cancer neither prevents nor cures cancer. If I told you that I am aware my kitchen window is broken, would you cheer? Would my telling you this fix my window? Would it prevent another ball from coming in the window? No. I think the race for the cure is over. I ask you, who would benefit from finding the cure? Women, not drug companies right? But it is becoming painfully obvious that money is not being spent on a cure, but rather on drugs and talking about cancer. We now need to spend money and energy on the prevention of cancer as well as exploring new and less toxic treatments for cancer. What’s new and worthy of research and trials? Read on.

Scientists are aware of a virus that initiates cancer in mice. Could this virus be responsible for cancer in humans? Maybe; scientists estimate that approximately 40% of all human breast cancers may be related to a virus. This virus, called the human mammary tumor virus, is nearly identical to a virus found in mice. (mouse-mammary tumor virus) that causes breast cancer in 95% of the animals it infects. If it can be proven that this virus causes human breast cancer, a vaccine could be developed to protect against it, and new therapies could be developed that could treat those women whose breast cancers are caused by it. It’s time we stop racing and start researching. To learn more, please see this documentary film, It’s Time to Answer the Question, nominated Best Film of the Year 2010 by Rethink Breast Cancer: http://www.youtube.com/watch?v=K4SCKJ1l27o.

There are at least two promising vaccines in the works. One, which is being conducted by Dr Brian J. Czerniecki, MD, PhD at the University of Pennsylvania, is already being tested in women with breast cancer—and is showing remarkable but under-reported results. He is currently the principle investigator for a vaccine trial for patients with DCIS. What is unique about Dr. Czerniecki’s trial is that it examines the efficacy and safety of vaccines in a much earlier setting, even before invasive cancer is present. The results from this trial are particularly exciting as they open the door for the use of vaccines as cancer prevention tools as opposed to treatment of late stage disease. To read more about Dr. Czerniecki’s vaccine, please visit:
http://www.penniesinaction.org/messagefromuschi4.html
http://www.penniesinaction.org/vaccine%20explanation.html
http://www.penniesinaction.org/about4.html

Another exciting study, spearheaded by Professor Vincent Tuohy of the Cleveland Clinic, has the potential to produce the first preventive breast cancer vaccine that also has therapeutic potential for women with Stage IV breast cancer. In May 2010, Professor announced that he had successfully developed the first preventive breast cancer vaccine, capable of preventing breast cancer in 100% of mice and also capable of slowing the growth of tumors that had already formed. Tuohy, a recipient of prior R01 grants from the NIH (the most prestigious funding available), is ready to begin Phase I trials (safety testing) in women. If Tuohy’s vaccine is safe and effective, it could eliminate 95% of breast cancer in this country, and possibly become an important therapeutic treatment for the 3 million breast cancer survivors now living in the USA. However, for this vaccine to become a reality, Professor Tuohy must receive the necessary funding. For more information on Tuohy’s paper, please see this link: http://www.nature.com/nm/journal/v16/n7/abs/nm.2161.html
To view a short video of Tuohy’s work, please see this link: http://www.youtube.com/watch?v=QffAJmyALb0

Exciting news? Yes, however, here is the big question. I talk a lot about cancer, cancer prevention and treatments. I go to as many conferences as I can. Why is it that there is so little talk of viruses and vaccines for breast cancer? I have Dr Kathleen Ruddy and Janet Hanson to thank for the information included it this blog. I am grateful to have learned of the new possibilities. However, for these and other cancer vaccines to begin to save lives, we need to stop talking and start funding the right studies. Now the challenge is not to keep aimlessly racing…it’s time to put some money in the hands of these skilled researchers and to let them test their theories.

Dr Ruddy sent me a blog she wrote last night, I love her idea of changing National Breast Cancer Awareness Month to National Breast Cancer Action Month. It’s about time we focused on action instead of pretty pink ribbons. To read her blog, please view: http://breastcancerbydrruddy.com/?p=2894

Elyn Jacobs
elyn@elynjacobs.com
elynjacobs.blogspot.com

**********************************************************
Elyn Jacobs is President of Elyn Jacobs Consulting, Inc. and a breast cancer survivor. She empowers women diagnosed with cancer to navigate the process of treatment and care, and she educates about how to prevent recurrence and new cancers. She is passionate about helping others get past their cancer and into a cancer-free life.

Tuesday, July 12, 2011

Hypotheses for Natural Cancer Remission

Today I am excited to share a guest blog by Kelly Turner. Kelly is a researcher, lecturer, and consultant in the field of integrative oncology. She assists cancer patients who are interested in integrating complementary medicine approaches with their Western oncology treatment. Her interest in complementary medicine began when she received her B.A. from Harvard University, and it later became the sole focus of her Ph.D. at the University of California, Berkeley.

Kelly’s dissertation research included a year-long trip around the world, for which she and her husband, Aaron Teich, L.Ac., traveled to ten different countries to interview 50 holistic healers and 20 “spontaneous” remission cancer survivors about their healing practices and techniques. She is currently working on a book for cancer patients that summarizes her research findings. I hope you will find her research helpful.

Hypotheses for Natural Cancer Remission – Part 1
By Kelly A. Turner, Ph.D.

My name is Kelly Turner, PhD, and I’m a cancer consultant and researcher who studies people who heal from cancer without Western medicine, or after Western medicine has failed to remit their cancer. While personally I believe in combining the best of Western (allopathic) and Complementary medicine, as a researcher I study anomalous cases.

For my dissertation research at UC Berkeley, I traveled around the world for a year asking 50 non-allopathic healers from 12 different countries about how they treat cancer. Afterward, I asked 20 cancer survivors who had healed without Western medicine why they thought they healed. After scouring the 70, hour-long interview transcripts for common themes, what emerged were 3 underlying beliefs about cancer, and more than 75 cancer “treatments.”

In this guest blog, I will be discussing the three underlying beliefs about cancer. I will be describing the Top 6 cancer “treatments” used by my interviewees in another guest blog soon at http://www.tamiboehmer.com.
You may also read my full dissertation here: http://www.shuniyahealing.com/offer/research.html

(Note: This study was designed to collect hypotheses. Therefore, please remember that the following “findings” are opinions only).

Belief #1: Change the Conditions under which Cancer Thrives
The majority of my interviewees believed that cancer thrives under certain, sub-optimal conditions in the body. Therefore, to remove cancer, they recommended changing the underlying conditions in the body, at which point the cancer cells would theoretically die off naturally. This is quite different from the Western (allopathic) medicine view that sees cancer cells as “invaders” in an otherwise healthy body. An integrative oncologist from Japan describes his theory as follows:

HEALER (from Japan): Cancer substance is not made by cancer cells, but by human beings. And the cancer substance to change is not cancer cells, but human beings. Bad circulation and low [body] temperature – cancer cells never created [those] conditions. Human beings themselves created [those] bad circumstances.

KELLY: So it’s the bad circumstances that human beings create in their body that allow the cancer cells to grow?

HEALER (from Japan): Yes. So, my understanding is cancer cell is not malignant cell, but sacrificed/delinquent cell…adapted to the wrong circumstances…In our body, cancer cells never arise up in a heart or small intestine, because these heart and small intestine are warm and high [in] blood and high content of oxygen. Small intestine and heart is good circumstance, so [they have a] small percentage [of cancer] – [it is] very unusual for cancer [to appear in those organs].

Belief #2: Illness = Blockage/Slowness, Health = Movement
The majority of my 70 interviewees also believed that any illness – including cancer – represents a blockage or slowness in the system, while health is characterized by unhindered movement and flow. The theory is that when everything is flowing smoothly – your breath, blood, food, waste, emotions, and even your energy – then your body will be healthy and able to remove any bacteria, virus, etc. that enters your body. One woman who healed herself of metastatic pancreatic cancer said it this way:

“I think the etheric body – the energy body – organizes the physical body based on thoughts or emotions that are either flowing or blocked. So as long as emotions and thoughts are positive and flowing…then the physical body is holding a state of greater balance. As soon as the thoughts become low frequency thoughts, or our emotions become low frequency emotions, then the energy tends to jam up or get blocked in the auric field. And when it blocks up enough, it first creates discomfort…When nothing is done to release those emotions or thoughts, or to change them, eventually it moves into the etheric field and sometimes even into the physical body, and that’s what causes what I call ‘dis-ease.’ And again, it’s still just energy that’s stuck.”

Belief #3: A Body-Mind-Spirit Interaction Exists, and “Energy” Permeates All Three
The third and final underlying belief that the majority of my interviewees discussed was the idea that a body-mind-spirit interaction exists, and that energy (also called “chi” or “prana”) permeates all three of these levels. A chi-gong healer from New Zealand, who is also a colon cancer survivor, said it this way:

“They say a person is made up of your physical body and your ‘shen’ – which [in Traditional Chinese Medicine] is your consciousness or spirit – and then ‘chi’ is the thing that connects the ‘shen’ and your physical body. So those three will work together and are one, really, but the key thing to remember is that the ‘shen’ leads the ‘chi,’ so your consciousness, or where the mind is going, is where your chi is going, and that begets your physical body. So if your ‘shen’ is really busy and very emotional, you know going up and down, that really depletes your chi, and that leads to disease or breakdown.”

From the Author:
I am always looking for more cancer survivors to interview for my research. If you know of any that fit my research criteria, please invite them to email me at kellyturner@ShuniyaHealing.com. To learn more about the benefits of complementary therapies, please visit: http://www.ShuniyaHealing.com.

Elyn Jacobs
elyn@elynjacobs.com
elynjacobs.blogspot.com
**********************************************************
Elyn Jacobs is President of Elyn Jacobs Consulting, Inc. and a breast cancer survivor. She empowers women diagnosed with cancer to navigate the process of treatment and care, and she educates about how to prevent recurrence and new cancers. She is passionate about helping others get past their cancer and into a cancer-free life.

Friday, July 8, 2011

Tamoxifen, Friend or Foe?

I follow many, many blogs and cancer-related online chat forums. One I saw today really stung. A woman asked if anyone taking Tamoxifen had ever experienced debilitating bilateral posterior leg pain and the inability to walk or sit without intense pain. She mentioned that she had done all the tests, MRIs, x-rays, etc. with no resulting explanation for her pain. She added that her doctor took her off the Tam and her symptoms subsided significantly. Another woman mentioned that issue plus a host of others, including a persistent and unexplained cough.

Well, I have been on Tam for four years, and three years ago I started experiencing intense pain while sitting, then found it very painful to walk. I saw one doc, told me pelvic misalignment was the issue, and after a few of his treatments, I got worse, I could only walk if I dragged one leg. So much for him. Saw another Doc, said it was two torn hamstring muscles, the left side being severe. I explained that this was unlikely as surely I would have known when this happened (something like a sudden sharp pain would be memorable). However, I was desperate to walk so I agreed to try his “treatment”, a painful and useless platelet procedure. No change. Saw another Doc, he viewed the same MRI results and said that it wasn’t a hamstring issue, it was a disc issue. He offered another painful procedure. This time I was not gullible and refused. He then suggested physical therapy. No change. Next I consulted an integrative chiropractor; he suggested misalignment and stress being the culprit. I will never know if he was right, but after a year of his treatments and the massage therapy he suggested, I am fine. Was it the Tam? Who knows, but I am starting to think so.

And then there’s the cough…..

In December 2010, I started coughing. Still coughing a few months later, I went to my Internist and since I felt otherwise fine, he suspected lung cancer. Thankfully the tests were negative, and he suggested it could be asthma and allergies. Okay, so that makes sense. I started to believe maybe he was right, and that perhaps my mother’s chronic cough could have been that too, undiagnosed. Now, I am not so sure…..was it, is it the Tam? I will have to take this up with my oncologists, but so far, NONE of my doctors suggested this could be the culprit. It’s well known that bone and joint pain can be common, but not the type of pain at issue here. I’d like to think that they are simply not aware of the connection as I happen to have much respect for my doctors…..at the moment.

Perhaps it is all coincidence. Perhaps not. However, one thing I do know is that before an oncologist so quickly orders Tam, AI’s or Chemo for that matter, more needs to be learned and side effects/symptoms taken seriously. I would hate to think that I spent thousands and thousands of dollars and endured years in pain dealing with problems that could have been eliminated by stopping the Tam. Are my symptoms a small price to pay for avoiding recurrence? Maybe, but again….quality of life doesn’t seem to concern most doctors….maybe it’s time they started teaching this in med school. One last note….did I mention that inflammation increases the risk for recurrence….humm….wonder how much of it I’m hosting in my chest, legs, and derriere. Prevention should not be part of the problem.

To read more the possible side effects of Tamoxifen, please view:
http://www.drugs.com/sfx/tamoxifen-side-effects.html

Elyn Jacobs
elyn@elynjacobs.com
elynjacobs.blogspot.com


**********************************************************
Elyn Jacobs is President of Elyn Jacobs Consulting, Inc. and a breast cancer survivor. She empowers women diagnosed with cancer to navigate the process of treatment and care, and she educates about how to prevent recurrence and new cancers. She is passionate about helping others get past their cancer and into a cancer-free life.

Thursday, July 7, 2011

Stand Clear of the Closing Doors

Today I am excited to share a guest post by Johnny Cathcart, a 2x childhood brain cancer survivor, award winning filmmaker and author. At 23 years old, he published his book “Hotpants….a memoir,” detailing his journey through cancer and beyond. He currently resides in New York City where he works as a freelance writer, videographer and editor, but his dream is to be a full-time author and filmmaker. I hope you get your dream Johnny, you’ve certainly earned it!

Stand Clear of the Closing Doors Please

“The year just flew by didn’t it?” “Has it been that long already?” “I climb the mountain, turn around, and I see my reflection in the snow covered hills…” So we’ve all heard some rendition of that statement, in all different contexts of life. Not just from the Dixie Chicks, but work, family… old high school friends, in our minds. Think back to elementary school. Time didn’t fly back then! I remember getting up, cartoons and cereal adventures in the morning, the looong day at school, all of the classes, recess, friends, walk home time, then riding bikes, and the hours of intense fun. Then there was family dinner, prayers, and a cartoon or two before bedtime. The year was nice and very slow. Remember? The swing set drama? Then there were all the high school stresses while working our way through the social mazes. Even college years seemed slower and more full than now. Though, since I popped out the long chute into the rock hard workforce world… the sun sets the minute it rises, morning coffee and evening cabernet become one, and the snow that falls melts to summer before it kisses my rapidly aging skin cells. What happened to that moment that is forever stuck in iPhoto now?

Well, ten years ago I had walked out of St. Jude Children’s Hospital in Memphis for the last time as a full time cancer patient. I was 15. Every so often I had been visiting for checkups; less and less as the years progressed, and 6/25/2011 will be my last check up ever. Recently my mom reminded me over the phone that after the 25th, if everything is still fine, then I would be completely discharged from the hospital forever. I sniffled up these thick, spongy tears at that moment. My cancer battle had been a constant struggle for 3 straight years before I was 15, completely turning my life and my family’s life in a different direction. “It’s been 10 years already?”

I think of how it seems like last month when I was blasted with my last radiation treatment. It seems like last week I hugged my college friends for the last time. It really does seem like yesterday when I moved to New York and heard that famous phrase “Stand clear of the closing doors please” for the very first time on the train.

Time is crazy like that isn’t it? Memories collect and bunch together, it all just goes in an instant and all of the sudden you are where you are… and 10 years have gone by. Poof! - iPhoto… It’s not gone though. They’re not just “memories” to hang on a mental shelf. They are building blocks. Every little thing, that one recess, that one detention, that one kiss, that first fight you had with your dorm mate, that first job, etc… all formed who you are now. Every bit of what happened to me, every scraped knee and every moment has made every bit of my character up to this second that I sit here typing at my Bronx apartment. The years totally fly by, but think about it… Reflect on each little thing that happened that made up between 9:00 – 9:15 this morning. When you add that with the conversation at lunchtime, and the unwinding news program on the recliner in the evening, you can think how each of those events, melded together, have become your person and character as it is right now. In other words, though they seem to have flown by, each event of every moment of every day, week, and month is profound and meaningful. “Yeah, I think back on these happenings now, the memories stacked up, and though they seem to have flown by, when I reflect on how each event has built up to me today, it all seems more filled, a nice full life time.” Has it been 10 years already?


Johnny was the videographer for a You Tube interview I did for www.TalkAboutHealth.com , featuring Ann Fonfa, Founder of the Annie Appleseed Project. To view the most recent clip, please view: http://www.youtube.com/watch?v=iPrBlhdI_Pk&feature=channel_video_title

To read more of Johnny’s work, please visit: http://vimeo.com/johnnycathcart

To Read about Johnny's book, please visit: johnnyhp.com

Elyn Jacobs
elyn@elynjacobs.com
http://elynjacobs.blogspot.com

*********************************************************
Elyn Jacobs is President of Elyn Jacobs Consulting, Inc. and a breast cancer survivor. She empowers women diagnosed with cancer to navigate the process of treatment and care, and she educates about how to prevent recurrence and new cancers. She is passionate about helping others get past their cancer and into a cancer-free life.