My holistic health approach

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Longtermsurvivor
Longtermsurvivor Member Posts: 1,438
edited September 2016 in Complementary and Holistic Medicine and Treatment

Dear forum members,

I've recently switched from being a listener/silent member at bc.org and have been writing at the Stage IV and Metastatic Forum. This morning, I ventured out to other forums and wanted to contribute to this one, because I've successfully engaged holistic health practices for over 40 years. Also, I have the deepest respect for others who choose to walk this often lonely road. Please consider me a companion (bringer of the bread), a sister pilgrim or one who's gone before.

The following is something I wrote at another topic that might be useful to some of you too. Please take what you like and leave the rest!

Thanks for asking about my natural approaches to pain. Sorry this is so long, but I feel like I'm running out of time and want to get this written down while I still have the focus to do it.

This is from my from my first introduction at bc.org: My name, longtermsurvivor, isn't my hope or wishful thinking, but my lived reality. I've been living with advanced breast cancer for 25 years. While I can't give you my survival secrets, I can share a bit of what I've learned - how to maximize "ease of well being", engage healing allies, substances and practices, and what I've learned about caring along the way.

I've had to live with pain and other unwanted symptoms my whole life because of a rare genetic condition - breast cancer mets are later arrivals on the scene that affect how I live within my body.

Because of early unfortunate experiences with many meds and surgical procedures, I tend to use the least amount possible for the largest good effect and the least unwanted effects. I also seek out holistic and integrative approaches including substances, procedures, healing allies, practices, process, service and faith.*

I don't think these are widely engaged in the cancer, medical or wider world, but I'm highly motivated to live my best possible life, given my physical challenges. I don't try to get rid of or control pain now, but to learn from and through it. It is my companion that too often clamors for attention.

I will work with and from anything that comes to me...though I'm feeling into my limits of what I can't yet do.

I hope you weren't thinking I'd send a list of herbal, homeopathic, body work, acupuncture, exercise and other tips for dealing with pain and unwanted symptoms. Sorry!

I hope this is helpful to you and others.

Sending loving, healing regards, Stephanie

* My personal definitions this morning, subject to change and upgrading. :)

substances = conventional and alternative medicines I take or inject or infuse or rub on my skin. Iscador, anthroposophic and homeopathic remedies top my list for the past 20 years, aiding me when chemotherapy failed me. Femara is the only anti-hormonal that helped me, but I engaged Estrogen for ER+ mets for 2 good years.

procedures = things like regular draining of ascites, now through an implanted drain.

healing allies = doctors and other health care providers including acupuncture, mental/emotional/spiritual support, my hospice team and my circle of caring friends who support me. Allies are those who see and support my unique journey and offer additional support that I may or may not incorporate.

practices = things I do on my own to support healing - self-touch & massage, movement, diet, meditation, relaxation, MBSR, creativity, writing, etc.

process = the intuitive deepening of these practices into a lifestyle, an approach and openness to how I respond to anything that comes through life or my body symptoms or from wherever. This is where cancer becomes more of a quest than a hindrance and I follow the adventure into unknown places that have expanded and enlightened my life.

service = engaging my experience, strength and hope to encourage and empower others on their/your unique life journeys. It has taken many forms, but is useful for easing my symptoms, distracting me from my own woes and gives me a sense of meaning and purpose.

faith = an enduring faith in the divine and my current challenge. Trust in others and how I fall into their care and how I surrender my body to the slow dying process.

I encourage all of you to continue your interest and exploration of the many and varied substances, procedures, healing allies, practices and whatever else serves healing. And to develop and trust your inner knowing to guide you on your way.

deepest respect, Stephanie

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Comments

  • pipers_dream
    pipers_dream Member Posts: 618
    edited January 2016

    Stephanie thank you for this. I think many women who were interested in alt have been driven off this board, but I'm hoping I'm wrong. I look forward to finding out more about your journey and this is very encouraging to me, since I'm pretty much all holistic in my approach--no surgery, rads, chemo, or meds.

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  • KBeee
    KBeee Member Posts: 5,109
    edited January 2016

    Stephanie, thank you for taking the time to share.

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  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited January 2016

    Stephanie, thank you. Please keep sharing your philosophy and way of being with us.

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  • starwoman
    starwoman Member Posts: 73
    edited January 2016

    Thank you for your reflective and inspiring post Stephanie and for your thoughts and links on other threads too. Look forward to hearing and learning more.



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  • starwoman
    starwoman Member Posts: 73
    edited January 2016

    I am always delighted to see your posts Pipers Dream - thanks for still being willing to share your approaches. May you continue to flourish and provide inspiration. I'm always researching (pros and cons of medical, complementary and alternative approaches) and discerning the best way of 'doing this' and have found your experience invaluable, so hope you'll keep sharing it.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited January 2016

    Hope to share more soon.

    Here are many podcasts on holistic healing and healing circles (healing in community):

    http://tns.commonweal.org/event-series/healing-circles/

    healing wishes for all, Stephanie
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  • Bestbird
    Bestbird Member Posts: 2,818
    edited January 2016

    Stephanie, thank you for your detailed post and excellent definitions!

    You and others may be interested to hear that I've just co-authored a draft white paper for the Metastatic Breast Cancer Alliance (MBCA) about the overarching need to study Exceptional Response, whether to conventional, complementary, and/or alternative tx. Also included is the fact that "Exceptional Survivors" (people who have considerably outlived their prognosis) need to be studied. Examples of studies have been provided in the paper whereby non-conventional therapies (such as mind-body work) directly affect biomarkers (such as telomere length and inflammation levels) which influence cancer outcomes. At this juncture I'm unable to provide more detail, but our hope is that the paper will ultimately reach a wide and diverse set of readers.

    I truly believe the day will come when Integrative Medicine will become the norm rather than the exception. It may take a few decades, but it will happen.

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  • pipers_dream
    pipers_dream Member Posts: 618
    edited January 2016

    I love this thread already!

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited January 2016

    So often when people speak or write of holistic health measures for cancer, they focus entirely on the what - what to do, what works, what doesn't, what to try.

    Sometimes where to go - John of God in Brazil, Philippine psychic surgery, healing pilgrimages, their local holistic health practitioner or center.

    It's assumed we all have the same why - battle or overcome cancer, fight and win, avoid the slash/burn/poison of conventional cancer care, stay home to care for loved ones, be the inspriational winner.

    We tend to lose track of the who - because what is good medicine for one is poison for another and what works at one time, might not work so well later. Our lives are incredibly different, our material circumstances, caregiving for others, ability to make choices and engage what works best for us. Some must travel, others find best care near or at home. Some enjoy grandiose, expensive, long-shot choices (the big gambles) and others are closer to the roots medicine of self care, keeping the basics together - adding what makes sense and subtracting (simplifying) what doesn't.

    I'm so curious about how each of the who of us weaves together the best of self-care and holistic care. And how that changes over time and with different circumstances.

    Example: Now that I'm on hospice, I'm even more devoted to self-care and holistic care. I'm working with a team for whole person care

    Dame Cicely Saunders, founder of hospice in the UK often shared her ideas about 'total pain' where there are no clean divides between what is physical, emotional, spiritual and social. Intersectional pain: what I've learned from hospices and feminism of colour

    I'd say I'm working for total happiness and well being (holistic health), even in the presence of pain, symptoms and death.

    So, what's happening with the whole of you? How do you weave together holistic health with a cancer diagnosis? What are your definitions and how are you working (or relaxing) to achieve them?

    Just curious to know more about YOU!

    Thanks, Stephanie

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  • cb123
    cb123 Member Posts: 320
    edited April 2016

    Hello Stephanie,

    I came here from another of your posts and I too am a Berkeley Hippie Dippie. Well, Old Berkeley Hippie anyway. Thank you for sharing, I appreciate the way you've been able to explain your approach and am fascinated by your 25 year journey. How things must have changed along the long ride. My first response to the medical community always seems to be fight or flight and I find myself fighting my own nature to "do the right thing" instead of running away. I fight the medical community until they or I can prove that the offered treatment will benefit my body.

    This especially is well put: process = the intuitive deepening of these practices into a lifestyle, an approach and openness to how I respond to anything that comes through life or my body symptoms or from wherever. This is where cancer becomes more of a quest than a hindrance and I follow the adventure into unknown places that have expanded and enlightened my life.

    I see we also share the same approach to pain, and I know it's not only pain but all things that bodies tend to do. Having lived with this particular body for so long, we've gotten to know each other. I recently tried to explain to a doctor why I would not be having a preventative hysterectomy. He just shook his head but I feel my body is still using those endocrine glands, thank you very much.

    My journey so far with cancer has been a war and Berkeley girls aren't raised like that. I'm looking forward to reading more of the posts you've shared and hoping to find insight into peacefully living with cancer.

    Thank you so much for sharing.

    cb

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  • Miami33145
    Miami33145 Member Posts: 3
    edited July 2016

    I'm new to the board so I don't know if this is in the right place or if anyone will read it but I'm just so darned excited that I had to try to get this shared in the hope that it helps someone. I was dx'd over Christmas with stage 4 ER/PR+ Breast Cancer. I had gone from no lumps to two big lumps in 12 weeks by the time I got dx'd. You all know the drill of the emotional, spiritual upheaval during that time. But I decided I was going to do research and battle it to the best of my ability. My doc put me on Letrozole? to block the estrogen and that was it. She pretty much said enjoy what time you have left and we will treat your symptoms as they occur. Yea... not working for me. I rolled up my sleeves and hit the internet. God bless the internet. At my recent 6 month check up, my doc said, whatever you are doing, keep doing it. My breast tumors went from being big and hard to her having a hard time finding them. The 3d Mammo shows they are still there but not bigger on films. My bone mets has actually gotten better. This was before the zometa? shot 4 days ago (what a nightmare that was). So here is what I've been doing.

    I bought a Far Infrared pad and now there is a smaller one that wraps around your breast and shoulder. I love it. Please do the research on Far Infrared therapy.

    I JUST bought my own ultrasound machine last week. This is the one that is going to knock her soxs off at my next visit. Please do the research on treating breast cancer with high frequency ultrasound. It will blow you aware. Researchers are SO close to using nanoparticles in conjunction with Ultrasound to have a solid low cost treatment for non met breast cancer. It is worth reading about.

    Plus supplements: Cucurmin, Resveratrol, Quercitin, Vitamin C, Spirulina and a good multi... I'll be adding Green Tea, MSM and AHCC this next go round.

    What I'm doing is working. More after my next visit. To whoever is moderating this site, the "I'm not a robot" thing is annoying.

    God bless all of my mets sisters. Hang in there... you just have to hold the line until the researchers get there!

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited July 2016

    Greetings, dear Miami,

    You sure don't sound like a robot, but a very strong and determined woman who wants to live and live well.

    Letrazole has been a conventional treatment that has worked well for me in the past and present (I'm on my 3rd time through with it now). While I'm on hospice and ready to go, I've had a great time as a statistical outlier and have many stories of transformation on all levels - satisfied with my well-lived life!

    Miami, as you are calling in your healing allies, I hope you consider others that may improve your odds.

    There's a good conversation in this neighborhood about the book Radical Remission by Dr. Kelly Turner. It doesn't make promises that you'll have the same results, but addresses key factors for radical remission that her interview participants engaged.

    https://community.breastcancer.org/forum/79/topics...

    I only have a few bone mets dx in 2012 and don't engage Zometa or Xgeva. If I had more bone mets, I might try these strong drugs, but other things call me. You might want to look around forum 8 for those with Stage IV and metastatic breast cancer. Maybe members of the topic on bone mets know something about the tolerability and effectiveness of the different drugs that could help you?

    Yes, heat has been a big helper for me too.

    warmest of healing wishes, Stephanie

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  • sarahrae
    sarahrae Member Posts: 86
    edited July 2016

    Stephanie~ I want to express my deep gratitude to you for continuing to share from such a deep place of wisdom, compassion, and courage ~ how inspiring!

    I would like to share the title below, wondering if you have read... I find that so much of my work is within my heart/spirit, cracking myself open again and again through this journey

    https://www.amazon.com/Inside-Miracle-Suffering-Ap...

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited July 2016

    HI Sarah Rae,

    Thank you for your kind words.

    I so admire Mark Nepo's writing. He's long been an articulate voice for those who've faced a cancer diagnosis and everyone who wants to live well.

    His work reminds me of the poet and philosopher, Rick Fields who did die of cancer, but not before writing

    Death and Dying: Fuck You, Cancer

    Looking Death in the Eye

    Helen Tworkov, from Tricycle
    March/April 1998

    Utne Reader

    http://www.utne.com/mind-and-body/archives.aspx

    (This URL doesn't look correct. You may need to copy and paste the title into a search engine to find the interview.)

    Yes, our healing work is heart work!

    I'm reminded also of this fabulous resource for a wide variety of podcasts - The New School at Commonweal. Look for me there - http://tns.commonweal.org/series/healing-circles/

    Sending warmest, healing regards, Stephanie

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited July 2016

    Stephanie, thank you for these links. I ended up reading some poems by Rick Fields, and really like them. There is a special sigh of comfort and soothing of loneliness that I get from reading a poem that connects me with another person who "gets it" and expresses it beautifully.

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  • Miami33145
    Miami33145 Member Posts: 3
    edited July 2016

    God bless you Stephanie. I hope your continued journey is filled with love.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited September 2016

    Bumping for readers of MBC forum who may want to read this:

    https://community.breastcancer.org/forum/8/topics/...


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