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Why I Became a Patient Advocate

Last year, I got diagnosed with breast cancer. My life fell apart. I lost my health, my energy, my job, my enthusiasm, my sleep, my appetite. My brain got sluggish. I was lost. Lethargic. Uninspired.

Then I started treatment. It was brutal. I shrank my sense of time to smaller units. I wasn’t thinking about what I would do after cancer. Or even making plans for the summer. I was just focused on making it to the end of the day. One day at a time. From my bed to the hospital. From the hospital to my bed. And again the next day.

Then, something happened. My body was still beaten up and shivering, but I started to see the treatment through new eyes. Amidst the misery, a new sense of purpose started to awaken in me. I realized that being a cancer patient also gave me an opportunity to be a proximate witness of cancer. I started to see the stress and trauma of treatment not as an inevitable dread, but as a design flaw that could be improved. I started to see that my pain could be turned into something positive. That I could leverage my first-hand experience of cancer, professional skills, and moment-to-moment awareness of my human experience to help oncology providers design a better cancer experience for other cancer patients. That gave me hope.

I decided to use my voice to give voice to the million voiceless cancer patients suffering in silence. I wrote a blog post about my cancer radiation experience and the distressing impact of stressful medical processes. A friend suggested I submit it to a medical journal to broaden its reach. I made improvements to turn it into an academic paper, and it was accepted for publication in the Journal of Patient Experience: Leotin, S. (2019). An Insider View of the Cancer Radiation Experience Through the Eyes of a Cancer Patient. This, in turn, opened doors to new conversations with medical providers. I was met by resistance by some and gratitude by others. I joined the board of the Stanford Cancer Center Patient and Family Advisory Council. I received invitations to speak at medical conferences.

My cancer experience made me aware of a gap in understanding the needs of cancer patients I had not seen before, and the unintended suffering it adds to the cancer journey. Cancer is a black box few people understand unless they’ve had cancer themselves. We need to bring to light the unseen needs of cancer patients to empower those who care to address them. Through writing, speaking, and the use of new technologies, my objective is to reveal the human experience of cancer and help improve the patient experience for all cancer patients.

I am thrilled to be joining the Lyfebulb community as Cancer Ambassador and look forward to meeting many of you, online and offline.

This article was originally published on my blog at sylvieleotin.com.

Twitter: @sleotin

Lyfestories: Jen Hodson’s Journey with Breast Cancer

When I was diagnosed with breast cancer, the scariest word in the room was “chemotherapy”.  Naïve to what active treatment would actually be like, I foolishly assumed that once I completed it, I would be on to a whole new adventure.  Wow, was I wrong. I finished big chemo in April 2017 (coming up on one year!) and my Herceptin infusions in December 2017. I’ve been out of active treatment for three months and things have never been scarier.

It wasn’t chemotherapy I should have been fearful of, I should have balked at “post treatment” instead. With chemo and targeted therapy, I was actively doing something against cancer, and now I’m simply existing.  Or that’s how it feels. My follow-up appointments are dwindling, my side effects are plateauing, my survivorship care plan has been queued up. So why am I feeling so utterly depressed instead of ecstatic?!

Turns out, this is more common than I thought.  After discussing with several others I’ve met online or in support groups, they all agreed that “post cancer” life can be quite brutal on the mind.  Not only for the aforementioned reasons, but because we’re left with the fallout from the fight. We’re putting together pieces we didn’t realize had broken. Depression, anxiety, PTSD, lifestyle changes, relationship changes, returning to “normalcy”, being sick but not looking sick, these are just some of the aspects of my life that came rushing to greet me as I closed the door on active treatment.

And I was not prepared to greet them.  Perhaps I’m still not, but I’m learning everyday how to equip myself with the tools to make it through this challenging time.  I’ve started to carve out 10 minutes everyday to sit and reflect, or to meditate, so that I can turn everything off and see what surprising thoughts come creeping out of the woodwork.  After more than a year of cancer running the show, I’ve learned that I still desperately want to learn sign language. Now I have a new goal to focus on. No seriously, I got that from sitting on my bed and listening to my Headspace app for 10 minutes.  It works wonders.

I’ve started to run again, and I even have a few races under my belt.  I’ve signed up for the Chicago Marathon in October 2018 and each day I can push my body and lungs to the limit, is a day I am thankful for. It’s an outlet for all the things I can’t control, I am quite literally running away from them.  And on the days that are the darkest, I’ll try and stroll around the park for a few minutes, just to be outside. A change of scenery always seems to help.

Most importantly however, I’ve started seeing a therapist.  This is the most important tool I’ve found during this tumultuous period.  There is so much to take in after treatment, there are so many questions that float around my head daily.  Should I become a vegan? How can I prevent a recurrence? Why do I feel guilty about surviving? About having fun? Journaling and reporting to my therapist keeps me grounded.  And it allows me an outlet to explore this new phase with a safety net. I’m happy to have it.

If you’re reading this, and find yourself in the same position, please reach out to your medical team for help.  I was surprised by the resources they provided me when I admitted that I was struggling. And if you’d like to chat more with me about it, you can find me on Instagram @jenhods or at my website www.rogueboob.com (if you’re not in the same position, that is amazing, but I hope you’ll still come say hi).  For everyone on this journey, just remember to put one foot in front of the other.

 

Inside the Patient Entrepreneurs Mind: Dana Donofree

Having a chronic illness can be challenging, and running your own business can be hard. No matter where you fit on the spectrum, we could all use a little motivation.  Our #InsidethePatientEntrepreneursMind blog series gives you insight and lifehacks on how to stay motivated from some of the most innovative patient entrepreneurs in the world.

Dana Donofree is the Founder, CEO and Head Designer of AnaOno, a lingerie & loungewear line created specifically for those who’ve been affected by breast cancer and its related surgeries.

Dana sat down with Lyfebulb to tell us how she started the collection after being diagnosed with Infiltrative Ductal Carcinoma. Dana had a bilateral mastectomy with implant reconstruction. She was underwhelmed by the bra options for women in this category and devoted her recovery and career to creating a line that was functional and fashionable.

What motivated you to create a business addressing a disease you know so well?
Being a patient isn’t easy. But it’s not because of the doctor appointments, or the life disruption, or how to manage your loved ones, it’s because all you want is to feel like the person you were before it was interrupted. That is the part no one tells you about or explains how it will affect you on levels outside of the pain, sadness, or struggle you go through…it isn’t just physical, it’s incredibly mental. When I found myself lost, confused, and having no way to find the answers, the diagnosis started dictating parts of life that were never expected, like how I felt about myself, or how I wanted to express my individuality. It was then I woke up and realized I may not be the only facing these challenges. That I may not be alone. I needed to do something about it. For me, that was taking my experience, my background, and my talents and putting them to use. That guided me to launch AnaOno. I wanted to feel beautiful, I wanted to feel sexy, and pretty and it started with my foundation. The act of simply getting dressed in the morning became my most feared task of the day, that didn’t happen before my cancer.

What are some of the hurdles you perceive exist for people with your disease?
People hear breast cancer, they see Pink. Pink shows pretty, femininity, lightness. There is nothing about breast cancer that represents these words that pink is so easily associated with. There is destruction and darkness. These are the realities, they are not pink. They are not something to celebrate. I was diagnosed at 27 years old, my life was just beginning, the pink shower that fell upon me was completely unrelatable. Living as a patient is my reality. I have to constantly face the marketing reality that has been presented to everyone else, that is an everyday struggle.

Who are some of your role models in your space?
My role models are the mothers, sisters, friends, aunts, coworkers that are diagnosed every day. It isn’t our grandmother’s (or grandfather’s) disease anymore. Breast cancer does not discriminate. And although I am facing my 8th year as a patient advocate, I see too many friends and loved ones facing a new diagnosis. They give me strength, remembrance and hope that we will conquer this disease, but we cannot accept what has been done in the past, and we must pave our own path to ensure our future is a world in which we get one more day with the ones we love.

What is your goal beyond creating a successful business?
AnaOno is not just about selling bras. Yes, we sell bras, but it is more than that. It’s a community, a support system that you can rely on for important, tangible information. I don’t want anyone diagnosed with breast cancer to feel alone; that extends itself beyond providing solutions for your treatment, it’s about supporting and holding each other up when we feel like falling. AnaOno can help strengthen that community.

What does Lyfebulb mean to you? How can we support you better? what are some of the biggest gaps today for a “young” entrepreneur?
For Lyfebulb to take a focus on chronic disease, by not only supporting the patients living with it every day but supporting those that have the skills and background to help make a difference, is an important piece of development in our community. Like living day-to-day doesn’t challenge enough, taking the extra step to make those days just a little easier is the path many of us take after facing these unique challenges. I am so proud to be a part of the Lyfebulb family, so I can not only have their support but I can support others taking the path less traveled and adding on the challenge of launching a new business!

How do you stay healthy and motivated to deliver?
Staying healthy is always something I strive for but feel I often fall short. I know life is short. I want to make sure my body is treated in the best way possible, medical side effects can really take hold. Then add on top of that launching a business. I have to give myself time to unwind whenever possible. It may be dinner with my friends, it may be a moment of meditation or a walk through the park. Just a moment to let my mind rest, while my body may be tired. I hope to find my path to mental clarity on a daily basis. That is something I will always have to prioritize in my life.

How has mentorship made a difference in your professional and personal life?
As a “young” entrepreneur, I know a lot, but I don’t know everything. Being open to criticism and feedback, using it to become stronger is very important in both personal and professional growth. It is also good to celebrate the wins or accomplishments. Great mentors will be there to celebrate with you!

How can we draw more attention to user-driven innovation?
Starting your own business, or inventing your own solution can be overwhelming, not to mention scary. Especially when you may not have all the skill sets needed, but I do believe with passion you can achieve anything you put your mind to. By telling stories of other entrepreneurs, who have launched their businesses, I can learn more through real voices and challenges. It also helps you to feel not so alone. It’s beneficial to hear the good, the bad and the ugly… because we all have those moments.

How do you maintain work/life balance?
Maintaining a work/life balance is hard when your work is your life. It may sound crazy, but I love every single moment of my life, and those that are involved, and those I get to meet because of AnaOno. It could be an introduction to another young woman facing a diagnosis, or another woman entrepreneur, or even teaching students how they can get started. My life is my passion, and my passion is my life.

If you had three wishes, what would they be?
That by the time my nieces and nephews grow into adults that they don’t have to be afraid when receiving a cancer diagnosis because treatments will be widely available.
For our society to see disparity as equal.
That no woman faced with a diagnosis feels alone in her life and her treatment.

What is your favorite song that gets you motivated?
Janet Jackson, Black Cat


#InsidethePatientEntrepreneursMind is a weekly blog series that highlights members of Lyfebulb’s Patient-Entrepreneur Circle. The Entrepreneur Circle is an educational and inspirational platform for all people living with or affected by chronic disease. Existing entrepreneurs will be available to educate new dreamers through the website and through live events. Check out last week’s featuring Johnnie Refvik. To read more or to apply to join the Entrepreneur Circle click here.

Lyfestories: Jessica Proto’s Breast Cancer Journey

It was the spring of 2017, around March. I was lying in my bed thinking that it had been a while since I did my last breast self-examination. I started to check my left breast and I could quickly feel a small lump there. I checked both breasts and under my arms, no lumps any other places. I asked my boyfriend to check if he could feel it, and he did. I immediately went online and googled “lump in breast”, which led me to several places that explained that a tumor would be hard and very firm, and not easy to move. Since my lump didn’t have those characteristics, I thought that probably it was just a fat cyst, so I waited another month before I checked it again. The second time I checked it I could still feel it; it had the same size, but just to be sure I wanted my doctor to feel it. He sent me to a clinic to take some tests of it. Unfortunately the results came back positive. Me, a 27-year-old girl, had breast cancer.

I think I was in shock at first. I managed to tell my mum that I had some cell alterations, while I told my sister and my brother that I had cancer. Because of my age they wanted me to take another test, just to make sure that it actually was cancer. The second time I got the answer to my result it was easier for me to tell my family and friends that it was, in fact, cancer. I always thought that cancer was something I probably would get when I got old, and it’s still weird for me to think about it.

My lump was small and I started off with surgery the 18th of august 2017. They removed the lump, analyzed it and the tissue around it and found two more tiny lumps. I had to have another surgery to make sure they removed everything, and then started chemotherapy in November. I consider chemo to be my toughest friend. One of those friends that constantly tells you the truth because they want what’s best for you, even if it hurts you a little bit. Chemo hurts my cells, makes my body ache and tired, but it is for my very best. My treatment journey is not over yet, I’ve still got a few months left, and then I can look back at this as a hard chapter of my life.

I am one of the lucky ones and that is why I’ve always tried to stay positive. I know that I’m surviving this so I usually don’t feel that I have any reason to be sad. I do have a bad day now and then, tired of the whole thing and just want to get back to my “normal” life. I miss my long hair and I don’t feel very feminine anymore. But, my hair will grow back, and I will get my “normal” life back. I also found it soothing to share my story with others. It makes me so happy if I can manage to change just one person’s life. I also would like women to open up their eyes and be more aware of this illness. I know a lot of women who started to check themselves at home after finding out about me. I do it every two-three months, and that is why I’m lucky to survive this. My message to you out there, men and women, is: If you are afraid something is wrong or you are not sure how to do a self-examination and need help, call your doctor. It could really save your life like it did to me.

Keep smiling, and stay positive. Life is good.

Lyfestories: “Cancer with a Smile”– Finding Life After Cancer

For many people including myself finishing treatment for cancer can leave you feeling a little lost. You expect to feel over the moon but often end up down in the dumps which can come as a shock. A recent survey by Breast Cancer Care discovered that more than half of breast cancer patients questioned struggled with anxiety after treatment ended and 26% said life after cancer was harder than chemotherapy or radiotherapy.

At this weeks final Moving Forward course with Breast Cancer Care we had a group session with a councillor and all eleven of us said we found life after cancer much harder than we had expected. Initially when treatment stops, being out of the cycle of hospital appointments is unsettling. I found I had got used to the constant care and attention of the nurses and doctors. It was comforting to know they were on hand if you had any problems.

Then treatment stops and its time to get back to your ‘normal’ life, but it just doesn’t seem to fit anymore.

Talking to the other ladies at the course it became clear we all felt a similar feeling of loss but for different reasons. One lady even described it as being like grieving, grieving your old life and body. I could completely relate to this as, for me, hormone therapy and the side effects are something that, ten months in, I am still learning to live with. I feel angry and cheated that, at 35 years old, I am dealing with severe menopausal symptoms while my friends are all having babies. The physical changes that breast cancer brings is another big hurdle many women face. The war may have been won but there are still a lot of casualties to be treated, operations that haven’t gone to plan, unpredictable fatigue and painful scar tissue.

The overall consensus from the group was that the mental scars run far deeper than the ones on our bodies. Many of us feel frustrated that, months after treatment is finished, cancer is still bringing us down but we find it hard to admit this to friends and family. The fear of recurrence is also very raw and many of use don’t trust our bodies anymore, fearing that every little ache or pain is the cancer returning.

Fortunately there are lots of resources out there. Macmillan and Breast Cancer Care both offer courses and counseling that can help cancer fighters deal with life after cancer. I had six sessions of counseling through Cancer Support Scotland which I found really helped get my head in a much better place. We finished the course in a lovely way by writing a letter to ourselves that we will receive in a few months time as a reminder of how far we have come. Our group was keen to stay in touch with each other and the course leader very kindly collected all our phone numbers and email addresses so we can arrange to get together again.

The ‘Someone Like Me’ service that Breast Cancer Care offers is another fantastic way to find someone who has been through a similar experience. It’s also very important to remember our cancer nurses are there for us during and after treatment, so if you have any niggling questions or side effects they are only a phone call away. If you don’t feel happy calling your hospital the Breast Cancer Care Helpline is manned by specialist nurses.

Life after cancer is hard but we are most definitely not expected to handle it alone.

To check out more of Audrey’s amazing work, go here: https://cancerwithasmile.com/

Instagram: @cancerwithasmile

Breast Cancer Warrior Thankful for Early Detection

I am a 70-year-old wife, mother, grandmother and university administrator. My cancer journey began October of 2014 with my annual mammogram followed by the mail notice of an abnormality and the ultrasound to check it out.   I was alone in my office when I got the dreaded call from my doctor telling me it was cancer and that I would need to find a surgeon.

After the initial jolt, I picked up the phone, called my husband and made it real by telling him the terrifying news. I tried to minimize the severity by telling him my doctor said it was small, we got it early, and that I likely could get away with a lumpectomy. I have no history of breast cancer in my family.  

Since it was now almost Christmas, I made the decision to tell only immediate family and deal with everything after the Holidays. So we made it through dinners, parties, Santa and all the fun with the diagnosis hanging in the background like Scrooge. And did I say there were tears…..lots of tears.

The first part of January, I saw a surgeon.  He explained that I could have a lumpectomy or a “mastectomy”– the word took my breath away. No one had talked about a mastectomy. He explained with a lumpectomy came radiation and with radiation came difficulties with reconstruction and increased risks of other cancers. Radiation was a must according to the standard of care.  Mind you, this was a very kind qualified doctor doing his job but delivering news that I was not prepared to hear.

I am a take charge person so for the next month, I visited doctors and plastic surgeons, visited with friends and friends of friends who had gone through breast cancer, researched on the internet to the wee hours of the morning, read studies, sent my doctor daughter in Seattle studies to interrupt in the middle of her 80 hour a week residency, drove my husband crazy with the what ifs, and railed against the forces in the universe that brought me to this untenable spot.  

I was having an incredibly hard time accepting that I really did have cancer and that I was going to have to make a decision about how to deal with it.  

When visiting blogs at 2 AM, it became apparent that I was not the only one out there in my predicament. Many women were doing the same thing trying to sift through all the information by themselves and come up with the decision that worked for them.

As I tell this story, keep it mind it is MY story. Not all woman chose to deal with the diagnosis as I did.  There are many types of treatment options and many types of breast cancer.  It is confusing at best and paralyzing at worst.

At the end of all my research, I decided a unilateral mastectomy with reconstruction was best for me given my fear of the side effects of radiation.  So, on March 9th  2014, I had a relatively new nipple and skin sparing mastectomy which leaves the outer part of the breast intact allowing for a good reconstruction outcome.  The pathology report came back with the great news: I had the “best type of cancer” if you must have cancer and would not need radiation or chemo.

The next three months were tougher than I imagined both physically and especially emotionally. June 1st was the reconstruction day and for the short term the end of the physical journey.  Healing has gone well and results are good.  The emotional journey continues, however.  The grief process is one that takes a little more time and doesn’t move in a linear fashion.  You go through the stages of shock, anger, sadness, and acceptance but not necessarily in that order.  I have entered the stage of acceptance– but on any given day anger and sadness can reappear. I know, however, acceptance is where I want and need to be for my continued healing and well- being.  

I am a stronger, more empathic person because of my breast cancer journey and try to be a spokesperson where ever possible to push the importance of mammograms for early detection.  

Medicine has come so far in what can be done both with the surgeries and the drug therapies for women with breast cancer. I pray my daughters and granddaughters will not have to go through what I have. But if you happen to find that you are one of the unlucky one in eight that end up with breast cancer, there are treatments and options and a marvelous life after cancer if you detect it early.

 

I Started Chemo On The Most Gorgeous Day Of The Year

I started chemo on the most gorgeous day of the year.  I had just gotten the full range of motion back in my arm post-surgery a few days before and was ready to take on the next challenge.  My dear friends came in town from Philadelphia to support me.  My girlfriends in Copenhagen gave me a series of gifts to be opened at each treatment.  My parents sent family photos.  Not a bad start.  After my first chemo session, I spent the day enjoying the sunshine.  I even met Seth Godin who was vacationing in Copenhagen.

In fact, aside from the needles, it was a pretty great day.

I was told the nausea would hit me 4-6 hours after the first treatment.  I didn’t want to sit at home waiting to be sick so, under Anders’ watchful eye, I didn’t.  And in the end the nausea didn’t come until four days later!  All in all I’ve been pretty lucky with the side effects though the fatigue is pretty hardcore.  I was sleeping 13-15 hours per day for the first handful of days after treatment and I’ve had a couple less than glamorous episodes involving me nauseous on the floor but nothing super grotesque or horribly unexpected despite the warnings.

The nurse attributes my “luck” so far to 1) drinking close to a galloon of water a day and 2) being pregnant which apparently gives me some special powers.  I would also attribute it to the super nice weather and my friends being in town.

My mind was focused on not wanting to be sick alone inside when there was sun and fun to be had.

So positive mindedness aside, what have the hardest parts been?

Trying to be productive.  The word ‘awake’ used to be binary to me; the exact opposite of ‘asleep’.  Now ‘awake’ has far more variance.  Often when I am awake I don’t feel fully awake rather like I’m walking under water, in slow motion or on autopilot.  And if I workout, I have to expect that a few hours later my body will suddenly feel like I’m sporting a lead suit.  Everything takes more energy.  When my goal is simply ‘to be’ I’m good.  When my goal is to complete a ‘to do’ list I am coming nowhere close.  Often I do 1-2 things and then take a 2-3 hour nap!

Buzzing my hair.  My hair is likely to begin to fall out in the next few days.  Rather than wait for big clumps of it to start falling out, I decided to take my new already short style another step shorter. Anders buzzed it for me.  As I sat in the bathroom with my eyes closed taking deep breaths, suddenly I felt faint and nauseous and started to sweat.  I guess it was a physical reaction to a very emotional experience.  It took me a while to regain my composure before Anders could begin again.  The fact is the Demi Moore/GI Jane look isn’t so bad, it’s knowing that it’s yet another step closer to bald.  And bald is a big (and long) step.  I had my new short haircut for a couple weeks.  I’ll have my buzzcut for likely a week at most.  See you again sometime in 2018 hair.

Demi Moore’s iconic 1992 Vanity Fair cover doctored to also have her GI Jane haircut Photoshop credits: Lone Illum
Going, going…almost gone!

 


Follow Nora on her blog: Reflections: Being Diagnosed With Breast Cancer While Pregnant

Behind the Pink

Two women diagnosed with breast cancer- different ages, different types, same mission- discuss what Breast Cancer Awareness Month has done to bring change.


What has changed this month in Breast Cancer Awareness month?

Lisa Frost, diagnosed in 2011 with Stage 3C lobular breast cancer, never had a lump.

Has it changed? I am not sure. I still see all kinds of crazy pink products out there that don’t make any sense and don’t seem to have any clear information connected to actual donations or charities. Just the other night my daughter’s cheer team had their “theme night”. They all dressed up in pink attire. I had a talk with her afterward about what it actually meant and sadly it meant nothing. There was no education, no fundraising, no talks of breast cancer at all. It was “just fun and pink.” Everyone knows that October is breast cancer awareness month and everyone knows that it is associated with the color pink, but unfortunately a lot of the time it doesn’t have any significant meaning.

On a positive note, the announcement by VP Joe Biden on the Cancer Moonshot, coincidentally or not, gave this month’s awareness a boost I believe. At least in the breast cancer community. They are working on speeding up the federal drug approval process and making it easier for patients to take part in clinical trials. Metavivor, the non-profit organization that gives 100% of their donations to metastatic breast cancer research ‘commits to funding $1 million in metastasis research grants in 2017 and double that in 2018.’ That is great news for the metastatic community considering only 7% of all research goes to metastatic cancer (all cancers). It was actually nice that this news came out this month. It also came out right after the metastatic community made their march on the nation’s Capitol for more funding as well. So all in all this was probably a better October than most of them. Hopefully, it is a trend and not just a one-time thing.

AnnMarie, diagnosed in 2012 with Stage 1 breast cancer after finding a lump herself.

Lisa, I agree with you about the pink. I loved pink before I realized what a marketing scheme it is. I see pink everywhere yet it is going to nothing. At the same time, I think it would be great to use this to discuss what some serious issues are. So many of us are suffering from post-mastectomy pain, lymphedema, post-traumatic stress syndrome and anxiety about our cancer coming back that it is time to discuss this part. Breast cancer is not tied in a pretty pink bow; it has some hard reality issues for so many. (Even divorce and bankruptcy but we never talk about that.) You mostly see “survivors” smiling and embracing this part of their life when the truth is far from that.

On the other hand, when Met Up organized the rally to capitol hill there seemed to be a shift. Not just Joe Biden and the Moonshot but more real talk about our Stage 4 friends. It took Mira Sorvino with Champagne Joy marching the steps of Congress for a newspaper to pick it up. While I was thrilled and excited that the Washington Post picked up the story and posted it, it drove me crazy that it took a celebrity to make a headline. What about all my friends who have died why didn’t they make the news? Why doesn’t my friend who is dying get a story without celebrity status? Nonetheless, progress is progress and now that we have their attention where do we go from here?

What would an incredible “Breast Cancer Awareness Month” be?

AM- You know I am a little devil right? So my thought is to use the pink crap to talk! Just like you did with your daughter we all should be educating people on what the money is and is NOT doing. We can use that pink to talk about PTSD and get those living through it really help with resources that care. How about highlighting local non for profits that may not be researching but really helping their community with co-pays, gas to appointments, mortgage payments and more. And most importantly how about stopping the deaths. That is the research we need, stop those with stage 4 from dying. When we do that we could research how their cancer spread, what is working and maybe find a cure by making metastatic cancer a chronic illness?

I do not stage 4, I was an early stager. But the reality is that 30% of those diagnosed with breast cancer become metastatic. I cannot ignore that 30% because that could be me but more importantly, it is my friends.

Lisa- I actually think that is a great idea. There are many needs where breast cancer is concerned. Without a doubt, metastatic patients need more. The only breast cancer that kills, it goes without saying that they need more research, but there are other needs with breast cancer as well. There are all stages that have financial strains, survivors living with horrible side effects from chemotherapy, radiation, and surgery. There are women/men with young children and families that need child care, meal preparation, housekeeping, etc. Not everyone has a great support system. The list of needs can be long starting from diagnosis to treatment and afterward. We may not always be able to get funding for research, but we might get local organizations and non-profits to donate or offer services to patients.

Together Lisa and AnnMarie give their thoughts on the future

I think that the one thing we can do right away, something that will plant seeds for the future of breast cancer awareness, is to talk to our children. I have 4 girls and you have 4 boys. We have started in our own homes talking about the realities of breast cancer and all that we have learned from our own experiences. Even though we do not carry the “known genes” for breast cancer that doesn’t mean our children are not at risk. We don’t know what genes will eventually be identified in the years to come. With my boys, I want them aware and educated on their chances of getting breast cancer. I want them to feel comfortable talking to their doctors. Regardless of the genetic factor, there is always important awareness. I talk to my daughters about checking for lumps and early mammograms, but also that cancer is not always a lump and cancer is not always detected on mammograms. This information is so important to know. In the last several years I know that both of us have been teaching our children what the “Pink” really means. They need to know how important it is to take their health into their owns hands and be their own advocates for themselves and their future families. Not all doctors ask the right questions. Our children will have to ask them.

Knowledge is power when it comes to our health.

7 Ways that Sacred Bathing Can Support Your Health & Wellness

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No water, no life. No blue, no green.

-Sylvia Earle

Bathing has long been said to be good for our physical health. A study in the New England Journal of Medicine showed that diabetes patients who spent thirty minutes in a tub of warm water lowered their blood sugar almost thirteen percent. Japanese research revealed that a ten-minute soak can improve the health of men and women. Bathing is good for the immune system and it decreases stress.

There’s a long history of using bathing medicinally.  The term “balneotherapy” relates to spa treatment, hot baths and natural vapor baths.  Resorts add minerals or essential oils to naturally-occurring hot springs.  Balneotherapy is used for illnesses like arthritis, skin conditions and fibromyalgia. The term “hydrotherapy” is a part of medicine that uses water for pain relief and treatment. It uses the temperature and pressure of water therapeutically, to stimulate blood circulation and treat symptoms. Hydrotherapy often includes water jets, underwater massage and mineral baths or jacuzzis.

Four years ago I was diagnosed with Stage 2 Triple negative breast cancer and I had to go through a lumpectomy, chemotherapy and radiation for 8 months.  This was a challenging period and it brought a few things into clear focus for me: my self-care, my need for continued relaxation and a newfound desire to connect daily to Spirit.  This was challenging as a busy psychologist and mother of two kids under 4 at the time.  At first I could not take hot baths after radiation but after I started to recover, I was able to take regular baths again.

I found that the one place that my husband and kids left me alone, was in the bathroom.  I was able to train them to give me 25 minutes of silence in there.  This became my, ‘me time’ to integrate visualization, prayer, meditation and more.  I developed this daily ritual and came to call it sacred bathing.  This was a regular healing time and dream time.

Today most of us are under chronic stress, especially those of us with chronic illness.  It is so important to take this time out for yourself.  A sacred bath is your spiritual and emotional hygiene.

To create a sacred bath, clear your bathroom of extra clutter, light a candle, put in some Epsom salts, essential oils and an appropriate crystal into your bath water.  You call in Spirit (whether that’s your Higher Self, God, the Goddess or your angels) to receive guidance while in the sacred waters.  Then you make a prayer and state your intention.  You relax in silence, do a specific meditation around your intention and listen for guidance.  Afterwards, you journal about any inspiration you receive.  This normally takes 25 minutes.

Below are 7 ways that taking a sacred bath can help you when you are experiencing chronic illness:

  1. It Connects You to Spirit So that You Feel Supported: When you feel lost or alone it can be helpful to connect to your Spirit and Higher Self. This wise part of you can see the bigger picture.  It moves you beyond your ego and limitations so that you reconnect with your essence and remember that your Spirit is stronger than your body.  This may not be true for everyone but it was very helpful to me.  If I had a difficult surgery it would help me to know that my angels were with me.  You can regularly connect to your Divine team through meditation and prayer.
  2. It Helps You to Be Present: Your sacred bath is a place to just be. In this sacred space you leave the past and future behind.  You don’t have to think about that next doctor’s appointment or procedure.  You can just relax, luxuriate in the essential oils and Epsom salt and surrender to the moment.  When you practice this regularly in your sacred baths it can carry over as a reminder to be really present in each moment, outside the bath too.
  3. It Shifts You from Fear into Love: When you have chronic illness you can spend a lot of time in fear.  When I was undergoing a lumpectomy surgery, chemo and radiation I was often concerned about getting an infection, being tired or in pain.  Each procedure had a variety of complications.  I knew that it wasn’t good for my immune system and mental health to spend a lot of time in worry.  So, taking a sacred bath can be a time to wash all that fear down the drain and focus on soaking up the unconditional love of Spirit.  You can use that time to focus on all the love in your life and what you are grateful for.  Again, this practice can later be carried over into your days as well.
  4. It Shifts You Into Your Healing Nervous System: Often we handle stressors while in our Sympathetic nervous system, which handles “fight or flight.” We prepare for defense, followed by exhaustion. In contrast, our Parasympathetic nervous system rebuilds our body, stimulates digestion and aids physical and emotional healing.  We enter this nervous system when we relax, like when we take a sacred bath.  We can practice making this shift regularly in our sacred bath and then notice which nervous system we are in during our daily lives as well.
  5. It Washes Away Limiting Beliefs, Centering You in A Positive Frame of Mind: We all have fears, limiting beliefs and moods that stop us.  In a sacred bath you picture all that negativity going down the drain, so that you’re only soaking up love around your intention.  This energetic shift often leaves you feeling peaceful and inspired.  This allows you to feel more hopeful instead of focusing on what might go wrong.
  6. It Connects You to Your Body: When we are going through chronic illness often we feel angry at our bodies for inconveniencing us and causing us pain. We may feel disconnected from our bodies and feel like doctors and people are working on them from the outside.  But, no one affects our body more than us.  Your sacred bath is your time to connect to your body and to ask it what it needs and listen for guidance.  Sometimes we don’t make this time to slow down and listen.  You can create regular time to hear and meet your body’s requests for more play, sleep, laughter, nature etcetera.  You can also picture yourself being healthy, radiant and energetic and anchor those feelings in your body.
  7. It lets You Experience Pleasure & Relaxation Instead of Pain: Again, when you are chronically ill you may have to undergo surgeries, shots and painful procedures.  Sometimes you may generalize this and feel like your whole life is about pain. Taking a sacred bath is pleasurable and sacred time for you to love yourself and your life again.  You need to put in time for self-care, for dreaming positive things about your future and to look forward to on a regular basis.

I hope this process that has helped me will also be helpful to you.  Remember that you are the hero/heroine of your story so you need to take good care of yourself and keep moving forward.

My Best in Love,

Paulette

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