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Painting To Heal My Body From Crohn’s

“Art is a wound turned into light” – Georges Braque

I was 21 when I was diagnosed with Crohn’s disease.  I was at the age where I was just beginning my adult life.  My life journey suddenly took me into a direction I wasn’t prepared for.  I was an outgoing social person who suddenly had everything taken away.  I had no control over my sickness.

For three years I battled with Crohn’s at its worst.  I lost an extreme amount of weight from not being able to eat.  Everything that was put in my mouth gave me agonizing stomach pain which then turned into extreme diarrhea.  I was a prisoner in my own home. Having to go to the bathroom 20 plus times a day became my normal.  But I could cope with the diarrhea, I could cope with the chronic tiredness, I could cope with the pain, I could cope with the joint pain that plagued my body, I could cope with the endless medication and the side effects it gave, but what I couldn’t cope with was the loneliness, the lack of control I felt I had over my life, and most of all, I couldn’t cope with not being the person I wanted to be.

After years of symptoms and trying medication to settle the Crohn’s, I formed an abscess on my large intestine which grew to the size of a football.  I was taken in for emergency surgery.  I was told when I wake up I will have a colostomy bag as there was probably too much damage to my bowel. I didn’t care.  I just wanted everything to be fixed.  I just wanted my life back.  When I woke up I remember the nurse saying ‘you didn’t need a bag’  I felt this was the first positive thing that had happened to me in years.  I slowly recovered from the surgery.  My body was so sick (before having the surgery), and the abscess had been slowly leaking poison into my body, so my recovery was very slow.

For the next few years, I suffered from bowel obstructions due to the scarring in my bowel.  I was placed in the hospital for a week, given IV medication and fluids, had a nasogastric tube inserted. The the pain and symptoms would pass.  My body started to heal.  My symptoms of Crohn’s started to stop.  I stopped all the medication, I stopped worrying about leaving the house in case I had chronic diarrhea,  I had no pain, I had my life back!

For 14 years I lived as if I didn’t have Crohn’s.  I knew the monster was being dormant in my body, but I lived like it wasn’t there. I met the love of my life and started a family.  I became a mother to 5 children and started working full time.  My life was extremely busy and I used that excuse not to look after myself.  My diet consisted of coffee all day and the take out food at night.  I would read and research different diets that people had success with to manage their Crohn’s.  I knew all the right things to do and eat, but my attitude always was ‘I’ll start tomorrow,’ but that tomorrow never came.  I knew I was a ticking time bomb, and if I didn’t change my lifestyle soon I would pay the price.  But I always had an excuse.  I started to destress my life by painting. I had always been creative and a free spirit.  I started to create art and found it was a way to emerge into emerge into a world where I could express who I was and who I wanted to be.

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Art became who I was and I finally found something I was passionate about and made me feel free.  I felt this was my way of doing something right for my body and mind, a way to destress from the hectic life I was living.  I continued to research different diets and lifestyles to heal my body.  But that research continued to only live in my mind and didn’t  make it into my day to day life.  My love of art and creating became my passion.  I felt my mind and soul healing and it had a calming effect on my life.

Then one day late 2015 I ate breakfast, and within 5 minutes I had diarrhea.  That one day turned into a daily occurrence.  Then the pain started. I pretended it wasn’t there.  I thought, if I could ignore it, it will go away.  But my ability to ignore it became harder and harder.  I started to take days off work, and started to have to cancel my plans with my friends and family.  But I still ignored it and didn’t want to face it.  I was too busy to deal with sickness.  I continued with my art as a way to escape what life was about to throw at me.

The day I knew the Crohn’s had awakened was the day I couldn’t wear jeans.  Wearing anything tight around my stomach was agony.  I knew the Crohn’s was back and I knew I needed to do something about it.  I went once again to my GP who told me straight ‘If you don’t deal with this now you will do no good to anyone’  she told me.  I thought of my kids and I thought of my husband.  I needed to face this.  My GP sent me to the ER.  They straight away admitted me to the hospital and started all the tests.  The MRI showed I had 30cms of my bowel affected by active Crohn’s.  I also had small perforations of the bowel.  I could no longer ignore it.  I was in the hospital for a week that time, then discharged for a week and back in for 10 days.  I was put on a high dose of steroids and started many long term medication that had success treating Crohn’s.  But the side effects from these medications are horrendous. I suffer from major tremors, my hair is falling out, major weight gain, insomnia, bad skin, extreme fatigue, low heart rate, painful joint pain in my hips, constant viruses, and my mental health was declining.  I took long unpaid sick leave from work.

Once again I was faced with everything being taken away from me. But this time I was a Mother, a wife and I had responsibilities that I never had when I was first diagnosed with Crohn’s.  The feeling of lack of control is one of the hardest things I find to deal with.  I learned very quickly I can only take it one day at a time, because how I feel today may not be how  I will feel tomorrow.  My home life quickly adapted to me being sick.   My husband and children quickly learned that they couldn’t rely on me anymore.  They all stepped up and helped out in their own ways.  Cuddles on the couch with me quickly became our way of making things better.

I started declining in my mental state.  Working in mental health I already knew how quickly it would be for me to sink into depression.  The feeling of loneliness is such a big part of this disease.  I found only a small handful of family and friends really understood what I was going through and supported me.  It is very easy to become let down and hurt by people when dealing with any chronic illness.  Most people didn’t understand how sick I was, or just assumed I was better.  Soon the invites, phone calls, and text messages stopped.  I started joining online social media support groups.  I was amazed how much this helped.  I gained so much knowledge on my disease and realized that the things I was experiencing, others were dealing with the same thing. Suddenly didn’t feel so alone.

I was able to work on my mental health.  I started trying to understand my emotions and why I was feeling the way I was at the time.  If I was feeling angry I would stop and focus on the real reason why I was feeling this way, most times anger equaled pain. When I was feeling lonely that was mostly because I had been in my bed all day, so I got up and laid on the couch around my family.  So each negative emotion I felt, I tried to connect with a reason and then changed my situation. I also kept reminding myself that the medication I was taking is playing a major part in my thoughts and feelings.

I continued with my art, but my whole way of creating changed.  Somedays I would only complete a background on canvas.  My hands shook so much I was unable to do anything with detail.  Somedays my art turned out dark and gloomy, other days it was bright and shiny.  I realized art was a way to express every feeling I was going through.  My art quickly became my therapy.  It became my healing.  Every piece of my art became an expression of my journey.  Every single detail that is on a canvas tells a story of what and how I was feeling when I painted it. I started creating journals.  I painted, drew and wrote every feeling down.  It was healing to read back and see how far I had come.  I started creating journals for others.  I gave them away to friends and family for presents, it soon became my passion for others to heal through being creative.

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I wish I could end my story saying I have gone back into remission and living life again, but I can’t.  Each day is a battle for me.  One day I will almost feel normal, and the next day I’m completely bedridden from pain and sickness.  I’m taking many prescription medications to settle the Crohn’s.  I struggle taking these as the side effects are sometimes worse than the Crohn’s symptoms.  I’ve also changed my diet, and am putting into practice everything I have learned.  I’m filling my body with probiotics, healing my gut with bone broth and eating clean and healthy foods.  I’m taking small steps to heal myself with diet, but most of all I’m continuing with my art as this is my biggest self-healing I can do.  I have found an amazing online community of people who experience what I do in their day to day lives.  It’s so helpful to have people who truly understand the struggle we all face living with a chronic illness.  Somedays I am able to support others, and then some days they are able to support me.

My future is still uncertain.  I’m still yet to find the right medication that works for me.  I’m still taking knowledge of different diets and lifestyles and making it work for me.  Trying to find the right combination is trial and error, but I do know that everything I am doing will eventually have a positive impact on my body and mind and hopefully put me back into remission one day.

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Becoming a Chronic Patient

26 June, 2009

I had woken up with Michael Jacksons’ “Ben” streaming out the radio. The news of his death had reached South Africa. I wrote my last mid-year examination of Grade 10 and celebrated by watching the newly released “The Hangover”. While we discussed the obsceneness of the film, I received a not-so-average phone call from my mom who had taken my little brother to see a doctor.

“Tracy, your brother has been diagnosed with type one diabetes”

Sure, my brother David had looked exceptionally unwell, stick thin and couch ridden, a far cry from his athletic build and energetic character. But what on earth is type one diabetes (T1D)?

“So what does that mean? Does he need antibiotics?” I replied.

Little did I know the whirlwind that was about to hit my brother and my family. We all grappled with the concept of T1D. What do you feed a type one? Is sugar bad? Insulin injections? What is insulin? Daily monitoring of blood sugars? We were a family unit exceptionally confused and desperate to help David through this diagnosis, but not fully understanding how.

David had gone from carefree 14-year-old to being his own doctor and primary caregiver- administering his medication every day.  He singularly experienced crippling low blood sugars when injecting excess insulin and the exhaustion of high sugars when he did not take enough. He was alone with these feelings as we could only try to understand and help where we could.

The integration of diabetes into an individual’s life and further more into a family’s life is challenging with mental, emotional and physical hurdles. Education regarding T1D came through websites, the endocrinologist, courses, and books, but more potently- through the experience living with a T1. We learned together through trial and error. We now knew and understood the symptoms, lifestyle of consequences of this chronic illness. (That most definitely does not require antibiotics, thank you Tracy of ‘09.)

At least, we all thought we had the subject waxed.

20 October, 2013

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I stared at my skeletal body in the mirror, my 20-year-old, incapable and broken body. My body and mind were permanently exhausted and constantly failing me. My bloodshot eyes searched and traced my bones. My head was surging and nausea scratched at my dry throat. Surely not, I thought.

With a knotted stomach and shattered threshold, I asked David to test my blood sugar. The countdown of the tester was excruciating, how could 8 seconds feel like an eternity? The monitor greeted me with a beep and a cheeky “HI”. Simple as that, I was diagnosed with type one diabetes. The tears flooded my eyes and streamed across my face.

My heart felt an incredible amount all at once.

It broke and ached.

It felt immense relief finally knowing why I was sick.

It broke again, for now I needed to break my parents’ hearts.

It sang that my brother and I were now a team.

I went from standing on the outside of T1D, curiously and helplessly peering in at my brother, to stepping in, right by his side with my own T1D diagnosis. I watched David tackle it for four years, expressing my sympathy and support. Now I was fully thrust into a position of empathy – I now knew what he felt.

With 10 years of exposure to T1D from David’s diagnosis to my own, I have felt the obvious lack of knowledge surrounding T1D in society. We don’t know the symptoms and we cannot seem to recognize the lethal combination of exhaustion, excessive thirst and bathroom breaks, unintended weight loss, blurry vision, irritability, and nausea. I was a second-year medical student, with a T1D brother yet it still took me months, to acknowledge my symptoms, to recognize my disease and act accordingly.

The thought that I possibly had T1D did flash across my mind in my last weeks leading up to my diagnosis but I kept dismissing my symptoms:

I am exhausted from being so busy.

I am thirsty and losing weight because I am doing Bikram Yoga.

I am crying, angry and frustrated each day because it has been a tough year.

I am simply burnt out.

The symptoms are problematic as they can be explained by most stressors in modern daily activities, which effectively delay an important diagnosis. Further impairing prompt and vital healthcare falls upon the shoulders of health-care professionals. The T1D diagnosis is often missed. It is a tragic oversight as it can be suspected by simply taking a patient’s history and performing affordable bedside tests. A urine dipstick or a finger prick glucose test can often scream T1D. The delay and failure of diagnosing T1D carries a heavy price, such as the heart-breaking stories of little Kycie Jai Terry (5), Claire Taylor (17) and Nicola Rigby (26), all losing their lives to undiagnosed T1D.

Living with this chronic illness has made me acutely aware of spreading my knowledge and insight into T1D. This inspired me to start my own Instagram account, type1tracy. Diabetes has enriched my approach in my medical studies, as I have become the chronic patient. It has made me mindful, grateful and present. Accepting my diagnosis, I have achieved more than imaginable and am blessed with appropriate medical health care. It has made me strive to be the best doctor I can be.

If you have T1D, you are empowered with knowledge. You never know whose life you may change by injecting your insulin in public, sharing your diagnosis, your symptoms, and your experiences. Above all, you can change lives and your own, by fully embracing type one diabetes – all while being unapologetically you.

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Diabetes Is A Part Of Me, But It Is Not The Whole Picture

I learned about my diagnosis as a Type 1 Diabetic on January 26th, 2016. With no family history, it came as a huge shock.

I went to work like normal, I noticed I didn’t have much of an appetite and I felt extremely tired. The exhausted feeling was increasing as the days went on especially since Christmas, but put that down to the long days (I work 12-hour shifts) this day, though, I was feeling terrible.

Mid-afternoon a sharp pain began in my stomach, persistent and unbearable. I left work a few hours after the pain started and I wasn’t at home long when my boyfriend insisted on taking me to the emergency. After undergoing several tests, the doctors finally concluded that my appendix was hours away from rupturing, which was directly due to high blood sugars. The appendix was removed and I spent a few days in the hospital.

After being discharged, it didn’t take long until I felt like myself again, physically anyway. I no longer needed to drink gallons of water and no longer felt constantly drained and exhausted but mentally I was frightened. I had no idea what this diagnosis was going to mean for me.

I took to social media, Instagram to be precise, and typed in #type1diabetic. I can’t begin to tell you how much relief I felt when I saw others, who are just like me, living with this chronic illness. It was a huge relief and has helped me to come to terms this diagnosis, ultimately saving me from the denial I was slipping into. Having discovered the online community, it encouraged me to share my journey by creating my own page, @type1chloe where I share my personal journey, and @type1community where I create my own/share awareness pictures.

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Passionate about getting involved in the community, in the summer of this year I attended the JDRF Walk for a Cure, the charity that is committed to raising funds for research to cure, better treat and prevent Type 1 diabetes. It was uplifting, inspirational and emotional to be surrounded by other Type 1s and their friends and family coming together for a cause so close to our hearts.Raising awareness is something I am dedicated to doing. I feel a sense of accomplishment when given the chance to describe what it is like to live with a chronic illness such as Type 1 diabetes. I made the decision to wear my CGM (Dexcom) on my arm, where it is visible to not only coworkers but also to strangers.

If I can break the ignorance by doing this, by educating others, then I believe I have achieved something very valuable.

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Despite diabetes demanding 24-hour attention, making it challenging to control, I don’t let it stop me doing what I want in life. I can live a normal life that just involves additional choices and a little more planning! Diabetes is a part of me, but it is not the whole picture.
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There Is (Almost) Nothing You Can’t Do With Diabetes

Back when I graduated from high school in the summer of 1997, I partied hard and ate whatever I wanted. I was constantly hungry and started the habit of ending most days with eating a box of ice cream. Aside from the hunger, I was super tired, constantly thirsty and didn’t gain weight despite my insane calorie intake. But hey! I was partying and didn’t really think about it too much.

My family started to notice something was wrong after I had to nap during a family gathering, and urged me to see a doctor. I did, and he lectured me on proper nutrition for a while and then, just to be safe, measured my blood sugar, which pretty clearly showed that I had diabetes. That was a Friday.

The doctor sent me home and told me to go to a specialist Monday. I remember biking home, not knowing what the heck diabetes was and thinking that I was dying. That was incredibly scary. I didn’t know anybody with diabetes and was completely clueless to what it all meant. In hindsight, my doctor should have done a better job at explaining the situation to me, and if I hadn’t been so shocked, I should have asked more questions.

To this day, it baffles me that he would diagnose me with diabetes on a Friday afternoon and just send me home. I obviously still had some insulin production (that stopped completely later, which is expected) since I could still function and didn’t look like a walking skeleton, but still. Any diagnosis like that is a major traumatic event and I had to spend the entire weekend deadly nervous about what was going on.

On the other hand, it was actually a huge relief to know why I had felt out of whack for so long. It’s interesting how we humans can adapt to a situation and start accepting it as our reality. Like the fact that I hadn’t been able to sleep through the night or sit through a movie without having to go to the restroom. That I was so deadly tired and had no energy.

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Seeing a specialist and getting the right support

Monday morning my mom and I arrived at Steno Diabetes Center, one of the (in my opinion) best diabetes treatment facilities in Denmark, and they confirmed that I indeed had type 1 diabetes with a very small remaining insulin production.

I was assigned a nurse named Lotte, and she became my lifeline for the first few years. She was great because she firmly believed that I should live my life just as any other 19-year-old. I really took that to heart, and still live by the philosophy that I do not live my life to fit my diabetes; I manage my diabetes so it fits my life.

Aside from starting on insulin, inducing the first hypoglycemic event (to ensure that I knew what it felt like and what to do about it), and teaching me basic carb counting, those days at Steno Diabetes Center gave me a great foundation for my life as a diabetic.

I often get asked if the needles scared me. It’s funny how I’ll almost faint if I get a vaccination, but injecting myself was never a big deal. I remember sitting there, with Lotte and another nurse looking at me, thinking “well I guess that’s what I have to do to survive”, so I just did it. It didn’t hurt and now it’s second nature.

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Living with diabetes

I did what Lotte suggested and still pursued all my dreams. In November of 1998 (less than a year after my diagnosis), I packed my backpack and traveled around India for 3 months. Lotte and I kept in touch by fax (yes, fax!!), and when my insulin got spoiled by heat (twice), I managed to get new shipments sent to me in Bombay. It went fine. I had a great time, and it boosted my confidence to know that I could manage my diabetes, even on a 14-day camelback ride across Rajasthan.

After my diagnosis, I continued eating like I did before. My body had been starved for so long (due to the lack of insulin) that I probably needed the extra calories, but I went a little overboard. I cut out the box of ice cream, but I still ate like two grown men. So I gained weight, and I gained a lot of it very quickly. After 20 pounds, I pulled the breaks, and that’s when my fitness journey as a diabetic started.

You can read about how I dealt with my weight gain in this post.

I’m not saying it was easy, or that it is easy living an active life with diabetes, but I am saying that it shouldn’t be a hindrance to living a full life. The diagnosis was scary, but for me, it wasn’t so much the diagnosis, or the needles, or the blood sugar testing that bothered me. It was more the uncertainty about whether I could still do all those things I had planned to do with my life.

Luckily, all my experiences up to now have taught me that there is (almost) nothing you can’t do with diabetes!

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A little practical advice

To finish off this post, I would like to give a little practical advice on what to do after your diagnosis (the more difficult emotional advice will have to wait for another post).

  1. Find the right doctor. Your regular doctor is NOT qualified to deal with diabetes, so you need a specialist (Endocrinologist)
  2. Tell your friends and family. Not only will they have a ton of questions, you will also need their help and understanding while you figure out to handle your diabetes yourself. If you have a hypoglycemic episode in school or at work, you want the people around you to know what is happening
  3. Join an online network. There are some really good forums and Facebook networks for diabetic where you can ask questions and get support

I Am A Warrior, I Have Type1

I have been a type 1 diabetic since I was 8 years old. My brother is a type 1 diabetic as well. He is one year younger than I am, and was diagnosed one year before I was diagnosed. Other than that, we have no family history. It just was a freak thing, a mystery. It is rare for a brother and sister to both have type 1, that’s what the doctors told us at least.

I was visiting my father in Michigan when I was diagnosed with type 1. I had extreme thirst, was always lying around, didn’t have much energy, and urinated my bed due to the extreme amounts of fluids I was drinking. I was brought to the doctor, and my blood sugar was unreadable due to how high my glucose was. The doctors taught me how to practice giving shots with needles on oranges; yes, the fruit. After that I was hospitalized for a few days.

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My brother Joseph and I, both type 1 diabetics. Diagnosed one year apart at ages 7 and 8.

I was so young and I didn’t understand exactly what was going on. It was a challenge. Even though diabetes had been around for years, in the 90’s it was still considered “new.” Today we have advanced medicine such as insulin pumps, continuous glucose monitors and mixed insulin. However, when I was a child, we did not have any of those. I had to administer multiple shots every day, and mix two different insulin’s together.

At school, my brother and I were the only diabetics, no one else. We both felt different and alone in that factor, but we did have each other. We would have to be called out of class to the nurse’s office to test our blood sugars and give insulin. I think the hardest part as a kid was not being able to eat sugar. I always had sweets before I was diagnosed, and then all of the sudden I wasn’t allowed to. Diabetes was so “new” to us at that time that things were eliminated simply because of lack of knowledge. We were told “no sugar, low carbs.” I was grateful however, that my parents found a sleep-away “diabetic camp” that my brother and I both went too where everyone there was just like us: diabetic.

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At diabetic camp. I’m still friends with one of the girls to this day, her name is Alison. Type 1 diabetic.

As I got older, my diabetes was mostly kept silent. I didn’t want anyone knowing I had to give shots. Then the insulin pump came during my high school years. I hid my pump so people wouldn’t ask questions like: “what’s that” or “why do you still have a beeper?” College was the real challenge though. I was in denial. I didn’t test my sugars often, didn’t give myself enough insulin and my eyes felt blurry. I felt invincible. All I did was drink and party. My a1c at the highest was 13, which is beyond dangerous. Shortly after, I was hospitalized for DKA (diabetic keto acidosis). That’s when I knew I had to get my act together.

As I got into my mid 20’s I began working out and seeing more and more diabetics on social media. I came across so many diabetic accounts and it made me realize there are people just like me, facing the same obstacles (and more), who were truly inspirational. I got my life back. I started listening to my doctors, testing my sugars all the time, going regularly to my endo and other specialists, and giving the proper amounts of insulin for my food intake. I began working out and being open to having my pump out in the open instead of hiding it. I became heavily involved in the diabetic community: JDRF Long Island Chapter attending walks and local functions as well as the ADA, ride to cure diabetes. I got involved on the diabetic app “Beyond Type 1” and was featured on their Instagram account for “living beyond type 1 by lifting weights.”

Raising awareness and being around other type 1’s made me realize that I was not alone. I loved what I saw at these events, so I began a diabetic Instagram (@t1dchick) with over 7,000 type 1 followers. They started asking me questions and advice, and at that moment, I knew I was a leader. I was helping diabetics and inspiring them to want to live healthy lives with type 1 diabetes.

After my social media explosion, I wanted to make diabetes visible. I created trendy diabetic alert bracelets and began selling them. I donated a percentage of my sales back to the organization that has been there since I was a kid: JDRF.

Diabetes has taught me so much. With age comes maturity, and I am truly living “beyond” this disease. I stopped feeling sorry for myself and started to embrace my disease and take care of my life. I have been on the Medtronic insulin pump for over 12 years now and just recently became a cgm, Dexcom user. I am so grateful for this technology, making my everyday life easier. Type 1 is manageable and I can live a long healthy life with the proper care and positive attitude.

I want to inspire others to not hide behind diabetes. There are so many people living with type 1. More and more diabetics are coming out and being open about our “invisible” disease.

Diabetes is part of who I am. I don’t remember life without having diabetes.

I am a warrior, I have type 1.

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.

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