Posts tagged #breast cancer

Your body your mind

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There is this saying “your body listens to your mind careful what you say”. The issue is when you had an illness like cancer your body says a lot. What should you listen to and what should you ignore? Who do we call and will they listen? These are real questions and concerns we have. I have found myself not telling what is going on because I do not want to seem like a hypochondriac, plus that look. You know the “omg is she for real?” look. I have for the past 3 years try to deal with a lot of my health issues on my own, mostly because I do not want to seem like I am crying wolf. The truth is I am in pain, constant pain. When I write it all out I think “what the hell is wrong with this person?”. I have told my neuro some, a little to my gastro, some to my oncologist, a little to my breast care doc and a lot to my GP but I held most in. Plus you see where I am coming from-which doctor and how much? Not to mention no one had an answer.


Recently I could not take any more “false positive” results, what does that even mean? The “there is something there, we just do not know what” comments were too much. I was sick of the pain with no explanation. So I sought out a new doctor that looked at everything. Heidi Puc is an integrated doctor. Now chill let’s look at the word integrated, it means combining allopathic and complementary therapies. I needed a change and she was it. I sat with her for 2 hours and she combed my case and listened to me. I mean listened to every ache, pain, twitch and tingle. I am curious why more doctors do not do that. She even had about 50 symptoms to ask me about. I feel like I am getting the answers.

Fear-that is a huge issue. We are so scared to get an answer or a DX we do not go. The anxiety and stress of knowing all too well how an illness can change you is mounding. The truth is the unknown is just as scary if not worse. It is time to take that fear and say  “bite me”. We can run from fear or run through it. While I am not a runner I am sick of letting fear consume me.

I am being tested and scanned like a mission in the task force. I am slowly getting answers. What is my point here’? Stop being worried about what the doctor may think or how you may look. Talk to your physician, if you can not fire them and get another. The aftermath of cancer or any illness of that severity is extreme we need to be our own advocate. Now I am not telling you to go to the doctor for every sniffle or hangnail. However issues that are persistent or nagging need attention, go I urge you go.

So while my doctors all listen to me and try to find the source of my pain I will try different meds to help. I will get blood draws and scans. But I will not be quiet any more. This is my body and I am tired of living in fear of it. Someone grab my tiara, I ready to face it head one!


My Other Side of Breast Cancer By Marianne Sarcich

This is a guest blog post by Marianne Sarcich

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The other side of breast cancer treatment. That’s where I am now. And grateful to be here. But every moment I’m here, I realize how little I understood about recovering from breast cancer, or any cancer for that matter. Do you know that I truly believed as I headed into my mastectomy on September 26, 2016, that I would be ‘good to go’ by Thanksgiving? And that all of this would be behind me?



Are you laughing with me? Or should I say at me? Go ahead. I’m laughing. If you’ve cancered, you know that is not even close to being the case for most of us. Here I am, just over two years out from surgery, and I am still dealing with post-cancer anxiety. And, I didn’t even know it was a thing that could be headed my way.



The anxiety didn’t hit me until my oncologist told me I was NED -- no evidence of disease. That was late October 2016. Shortly after that appointment, I began to feel it, the fear, the panic. How did she know they got it all? What if I still had breast cancer? What if I get it again? What if she’s wrong?



I directed that panic into cleaning up my eating and my kitchen. Anyone who knows me knows I’ve been a pretty clean eater for some time. But with the anxiety raging that suddenly wasn’t good enough anymore. I needed to ditch every preservative. Every toxin. And, I needed to do it NOW.



And don’t get me started on the plastics in my kitchen. They’re gone now, as you can imagine. Replaced with glass containers. But, one evening that December, I literally was on the edge of a huge panic attack as I poured my daughter’s nightly Zyrtec into a, oh yes, plastic cup. The security of having a clean kitchen suddenly vanished. I remember turning around in my kitchen and seeing all the other plastics that somehow I had missed -- the salad in the plastic container, the baby carrots in the plastic bag. I couldn’t take it. I walked out. Because a clean kitchen was my shield, and it was just shattered. At least, according to my anxiety. And we all know that it can trigger irrational thinking.



I worked very hard on managing my anxiety as soon as it hit. In fact, managing my anxiety became my part time, sometimes full time job. I turned to holistic tools and booked my week with as many as possible. Support group. One-on-one counseling. Art therapy. Writing workshops. Yoga. Exercise. Acupuncture. Reiki. Mindfulness. Meditation. And even gratitude work. My dance card was full for months and months.

All of that did help me. Those are powerful tools. But the progress I made using them was shredded in August 2017 when I found out I needed a uterine biopsy. That's when my anxiety became monstrous, and I was almost not functional. I started taking Lexapro, which I still take. But of course it takes time to take effect. So, I took Ativan along with the Lexapro and drug-dozed through the worst anxiety I’ve ever experienced. Thank goodness that biopsy came back negative. So I could focus once more on healing and becoming me again.



Some time that Fall I became aware of just how extremely healing connecting with others in the breast cancer community is to me. There is nothing like talking with someone who absolutely understands your experience and what you feel. So, in January 2018 I created a peer mentor group on Facebook called In This Together Philly Wilmington.



Working on this group is saving me. Connecting others to each other and to the resources they need plus meeting them for group outings...it is like gold to me and managing my anxiety. It calms me and releases me to breathe just a little more freely.



Perhaps it’s because it gives me the feeling of putting some sort of order on the chaos that is cancer. Perhaps it’s because it makes me feel as if I’m protecting people from some of the pitfalls I faced. Perhaps it’s because of the incredible love and compassion that flows throughout the group. It doesn’t really matter why. My group just is my anxiety healer. My new shield that I carry with me.


Today, as I write this, yes, I still feel the anxiety. But it is no longer front and center and defining my life. It’s been back burnered. And hopefully it will one day be gone. And I’m more engaged in my own life now and with the community than I’ve ever been. I’m doing more living in the moment and not in my head where it can still be very dark. So, for me, for now, my other side of cancer lies with healing through deeply engaging. That is my path now.

Growing Stronger Together

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Whenever I hear a group of advocates says “I found my tribe” I smile cause that is the best feeling. Then I think who the hell is my tribe? I have so many breast cancer connections that I often find comfort there. But is that my tribe? That feeling of “oh my gwad they truly understand”. Sure they are my breasties that I would be lost without that is factual. See, I was always the one that had such an array of friends I did not know which group was really mine. Yeah I hung with the jocks thanks to my BFF Alissa, hung with the stoners thanks to my HS boyfriend and the preppy crew, and even hung with the smarties. I never had a tribe I just had people. The same thing happened in my adult pre-stupid dumb breast cancer life, I love to just have an enormous group of peeps around me. Then I was diagnosed with cancer….dun dun dun. I realized fast who would be there, who would cheer me on and who would leave. Honestly, at the time, I was pissed but now I get it and it actually helped me. My large circle got smaller and I needed that.

 

As an advocate, you look for those who understand your mission, believe in the cause and want change. So clearly I could find some in the breast cancer community. Like all other advocacy, the BC people divide up by type, stage, and even gender. Fran,kly, it was confusing to me I am a team player and if I wanted in on the Triple Neg awareness why the hell not? But nonetheless there is a divide but I still found my people there.   We waant real education, real change, and reality checks. I love that!

 

Then one year my very dear friend Jen from Booby and the Beast told me to apply for HealthEvoices. What the hell is that? I have been to YSC and LBBC aren’t I supposed to stay with my people? But I thought “shit sure I will apply”. I had no idea what to expect none. But Jen was going to be there and I got to meet Uzma, Brandy and Claudia so win win. That year I arrived and meet Marisa striaght away and it was really amazing to connect with her because she was doing such great things in Lupus but I do not have that so I thought no big deal so far. I also forgot to pack underwear but that is a different blog post I suppose.  Bonus was I found fast was that the Janssen and the Tonic team put so much heart into  conference it is impossible to not feel the love they are spilling for us. They care which really made a difference to me. I never once felt anything other than that.

 

Opening ceremonies I sat in the front with Marissa , I was so eager to hear Jen speak! I was quickly immersed into  the stories being told from the HIV, IBD and many other communities. I remember thinking “WOW there is advocacy all over” And then Chrisa got on stage and she started to speak. She talked about her son who is schizophrenic and what it was like raising him and being his caretaker. She said something that I’ll never ever forget.“Why is it OK and acceptable to give our child chemotherapy if they’re going through cancer. But if a child has a mental illness we all gravel and are shocked when we want to give them medicine“. I sat there sobbing not because of her son but because at that time my son was going through his own mental health issues and we were debating whether to put him on medication. And I thought “she gets me she understands what I’m going through”. We’ve been friends ever since and she added me to an amazing Facebook group. What a connection that was?

 

Then I applied the following year I thought shoot I had such a great time I would try again. I did not think I would be accepted but I was and I was so freaking happy. I was also there with Wisdo doing videos so it was double fun. And double the amount out of work- I was wearing about three different hats that year. So that was the year that I was told that I had MS. Truth is I  hadn’t really told many people I guess mostly because I didn’t want to admit it -stupid dumb MS. Then I met this guy Dave and he was so full of life, so vibrant and freaking hilarious. He was also in a wheelchair advocating for MS and I was in awe. I thought holy pins and needles I am going to get through this shit show. So I went up to him and I said “hi my name is Annmarie usually blog for breast cancer. But I want you know that I have a MS”  He said something on the lines of “well that sucks”. I thought this is my guy I love this dude. And we been friends ever since. Together we grow!

 

So it brings me to this year in this very long post that you probably haven’t even gotten to the end of them are wondering why she wrote it so long. I couldn’t have been more thrilled to go and  the anticipation was already leading up to it. Everybody was messaging each other and we couldn’t wait to be around one another. The year before I connected with Michelle  mostly because she sat next to me during open mic night and crack jokes. She has an extremely inappropriate sense of humor which of course I gravitated towards. So I couldn’t wait to see her. The cancer community is not just BC which is pretty freaking awesome too because I may have never met my little brother Kyle who runs Check 15. See I was supposed to go to the Cancer Summit and I ended up in the mental health summit which was fine but it made me think. I watched the Twitter feed and the Instagram feed and saw all the pictures of the different groups together -the RA, diabetes and IBD and many many. I sort of suck for not naming all the advocates, so do not be an ass check the link to HEV and read some! 

 

 

And I had a revelation. Honestly it brought me to tears. I don’t have RA and I don’t have diabetes I don’t have a lBD and I’m not HIV positive. I am a hot ass mess yes but with MS and breast cancer and a whole lot of mental health. But the truth is I am a part of all those groups even the ones of illnesses I don’t have. This is my tribe. It brought me to tears and I don’t cry easily so you know I had to be serious. Being a part of healthy voices and what Janseen has created is unbelievable to me and I am so thankful to them, they care I swear they do. I miss them come Monday when the conference is over, I worry that they are ok. I miss our selfie‘s and our laughs. And our extremely inappropriate humor sense of humor. Gabe Howard my have seen that I do not have nipples it was educational even though it possibly made a few uncomfortable...ummmm the other  Gabe. Doesn’t matter that we don’t all share the same illness or nipples or testicles. what matters is that were advocating for a change and for people to understand us. I have to say that I’m sick of preaching to the breast cancer choir they’ve heard it they know it and they’ve lived it. It’s time to preach outside my circle they have them understand what I’m going through. At a conference like this I can connect with advocates for each other but I walked away with new friends I walked away with people that I consider my family. I walked away knowing that these people advocate not just for me but with me. Knowing that if I looked like I wa sin pain at 1am they check, Rachel

  Alycia Bridges  I really do look up to you

 Alycia Bridges I really do look up to you

 


When you ask me who is my tribe is this is them! They are eclectic, they are amazing and they are empowering. They are there is you have a PTSD break down if you have and sister with cancer, if you need to talk about sex or lack of and most of all you do not have to pretend with them or share a late night pizza.  It has been an amazing few years with this group of misfits and I have been honored to be a part. And they like me they really like me!!! The bonus NONE  of them will take my tiara well maybe Robert.

Spouses and Cancer

A friend asked me what I wanted my husband to know about my breast cancer. I literally can not stop thinking about it. I even posted the question on Facebook. There are so many things I want TFO to know about this stupid dumb breast cancer that I since she asked me over 5 hours ago  I am still thinking about it I clearly need to write it out. While I do not regret anything he did there are many things I would want him to know or really understand looking back for sure.

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First, know that my husband did the best he possibly could. We had no idea what we were doing then. NONE. He is a fixer, like many husbands and he wanted so badly to fix this when I was diagnosed. He could not figure out how and that was frustrating to him. That is the first thing, I would want him to know he can not fix this, ever. This was not your fault or mine. There is nothing he can do to ever make this right. Nor can he ever really say the right thing. I am not sure if that was harder on me or him. Which ties into the second thing, saying nothing is sometimes the best thing to do. I think we sometimes want to say just about anything but in truth the wrong thing comes out which ends up causing pain to everyone. A simple hug or shoulder to cry on is the best and all we need truthfully. Doing that would have saved many shower sobbing I know because asking me “what is wrong” as I sit with drains or radiation appointments is not really what he meant and not what I wanted to hear. We both know this now. At the time TFO did not know what to say but thought he needed to say something but all I needed was him.

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I want TFO to know that even 5 fucking years later this body is not what I envisioned. The scarred, mutilated version I am left with is something that is difficult for me to come to terms with. That while my husband loves me all of me, I am still angry, hurt and sad that what I had is gone and I am so changed. That I can feel the way I did and that I am left with something I had no choice over cancer made me. Yes I have made progress through this but the weight gain and the scars still creep in under the sheets. Add the fear that any moment it could come back and my mind goes very dark. Cancer is a mind fuck no one warns you of yet they leave you to figure it out after. I want TFO to know that part. That I am still processing this whole thing and I need time to build it back together.

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My husband should know that these stupid pills I take to “lower my risk” also add to daily joint pain which is also a daily reminder that I even had stupid dumb breast cancer. So while he may forget about I think about it daily with the pain, the scars, the fake boobs- it is all a reminder. I have changed because of this. How could I not? I have changed so much but I am still me. TFO needs to know that breast cancer screws with your hormones so while I may seem out of whack I am! I lost my breast, my ovaries, my uterus, everything. Then I take a fake hormone to block any other hormones trying to get in. It is a major adjustment. And I am tired, so tired.

 

TFO should know I am sorry. Why sorry you ask? Because there is a layer of guilt. That I did this to our family. That for a year and now for life I put our family through surgeries, radiation, doctor appointments, drains, more surgeries, scans, and fear so much fear. That our boys were robbed of innocence at 12, 10, 6 and 4  years old. It is my fault that on their medical records it will say a history of “cancer”. That for the rest of their life they will live in fear that something will happen to their momma or that they will get sick. I am so sorry. And that is a part of stupid dumb breast cancer my husband should know. One that shatters my heart. 

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My husband should also know that because of breast cancer I broke my filter right off. I want people to understand that less than 7% of funding goes to metastatic research or worse 4% goes to pediatric. My eyes were opened because of this diagnosis.  My husband should know that I will bare my scars, not only for myself but so that the next person diagnosed can see that you do heal, the drain holes to close up, that you do get through each step. When others relate to the images or see me they connect and validate my emotions and I heal a little too.  Then we are both not alone. I have been there through it all I refuse to let the next person be in that bathroom crying alone.

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TFO should know that while I may not always need him to fix me I do need him to shine my tiara, for life. Even if sometimes it is from a hospital bed. 

Posted on November 21, 2017 .

Pink Party Time

Breast Cancer Awareness Month

What are you aware of? When you walk into the Dollar store and you see that cardboard display of pink crap do you think “well this will save a life”?  Hey everyone news flash …..

MAKE SURE YOU CHECK YOUR BREASTS. GET MAMMOGRAMS AND TALK TO YOUR DOCTOR ABOUT THE RISKS!

There you now do not have to buy any crap and you know that you need to check yourself. But what else do you know? What is the awareness in that ribbon? It is not just self-breast checks and mammos but that is what they want us to think. It is not a pink party but that they push too. 

How about knowing that you may lose your job, your spouse may leave you, you become depressed, some hate their body after, reconstruction can fail, and it sucks! There is nothing positive about breast cancer or cancer NOTHING it is cancer people! Who ever thought that was a thing to be happy through cancer?? I am so confused by that. People want us to be happy, about what? Having our breasts amputated? Is chemo a puke party? Maybe having your skin burned for 33 days is so positively awesome. Wait it must be having a Stage 4 diagnosis, that must be where the fun is at? Now do not get me wrong having a good attitude is one thing but let that person choose when do not shame them into when they should be feeling it. They can be pissed, happy, mad, depressed what the hell ever it is a cancer roller coaster. 

My point? It is ok to be negative this sucks, every step (except that you get to read my blog that is great right?) But companies have taken it upon themselves to market the hell out our cancer, they are selling our disease for profit while we are suffering. I do not know about you but I do not see a penny of that pink ribbon crap, did you? Why are we letting them? Why do we sit back and let them market this while we are still being diagnosed, still dying? 

Did you see gold last month for Pediatric Cancer? Or did you even know Liver Cancer was this month? Who was talking about Mental Health Awareness Month last month? And how many will be wearing purple for Pancreatic Cancer? Why.. because Breast Cancer is marketable! All that “save the tatas”, “Save second base” bullshit. Makes it fun and sexy because Breast Cancer is so much fun and sexy, ummmmm sorry to burst your pink balloon but it is not!  Did it dawn on anyone that slogan sexy crap totally discredits the males that get breast cancer? The fact that over 400 men will die this year from breast cancer should make us turn our heads and want a change.

I was told I should be ashamed of myself for being “negative” and not seeing the other side. Well, screw that! I am not just pissed off they are selling my cancer as a marketing tool I am pissed that my friend who is 15 has DIPG gets only 4% of funding and freaking no attention to a disease that is killing kids, kids! While we market breast cancer because it has to do with breasts! Get over the boob obsession people.. EFF that (watching my language cause my 12-year-old is reading this as I type). I am pissed that every time someone buys some pink crap and thinks they are doing good they are getting lied to while my friend Beth is dying. And truth be told I have a 1 in 3 chance of being metastatic. Those odds suck but keep buying that pink crap.

I will say it again ….I LOVE PINK! Love it, I want to bath in it. For the record, I love when my family and friends wear something like an SDBC shirt or something pink and they do it to support me because they too know what we went through and the truth with the ribbon. I have a pink ribbon tattoo on my foot. But I know very well what is behind that pink ribbon, don’t you want to know too?

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#whyresearch

Let me start this by stating I am not getting paid for this. I have asked Christopher and Banks to take what they would pay me and donate it to Breast Cancer Research Foundation (BCRF). Why would I do that you ask? Well how the hell could I ever talk about “think before you pink” or “do not buy that pink crap without knowing where it goes” if I took money for writing and promoting a breast cancer campaign?! I could not- I would be a hypocrite.

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Breast Cancer Research Foundation and Christopher and Banks, a specialty women’s clothing retailer that’s based in Minnesota and has more than 470 store locations across the country, have partnered up for a breast cancer campaign. During the month of October, 50% of the purchase price  from their Breast Cancer items will be donated to the Breast Cancer Research Foundation. Whoop Whoop!!

 

I asked Christopher and Banks if there was a personal reason why they are donating 50% of the sales from their breast cancer line to BCRF and they said that they are a woman’s store and want to be active supporters of a disease that affects so many women. I will be honest: That was a better answer than “My aunt had breast cancer,” do you know why? It says that they care even without being directly affected by this stupid dumb disease. Why BCRF? Because RESEARCH! I was in. It’s estimated that 40,450 women and 440 men will die from breast cancer in 2017. We need research dollars to support and help them.

 

“At BCRF we unite around research, the only way we’ll

achieve a future beyond breast cancer. This lies at the

heart of our Cancer Divides, We Unite storytelling

Campaign.”

 

Christopher and Banks has been a BCRF partner since 2012 and has raised over $150,000 for breast cancer research. This is money that goes to real research that helps to find a real cure. That is a store I can get behind and go into! And I will be, this Saturday at Great Northern Mall for an event to spread the word. If you have a Christopher and Banks location near you, I suggest popping in during store hours to recognize the strength that women behind breast cancer have, and participate in styling sessions and makeovers. You can also purchase items supporting BCRF online.

 

In my chat with both organizations, I commented that I was sick of my friends dying they replied, “so are we.” I truly believe they are committed to that. Research is the only way we will stop the deaths. Breast cancer kills more than 40,000 women and men in the U.S. every year. It separates us from our dreams and cuts short the lives we hoped to share with families, friends and loved ones. Christopher and Banks is honored to partner with BCRF to support this mission—and so am I.

 

“Every hour of research improves outcomes & saves lives. Donate to BCRFcure and we can #BeTheEnd

of breast cancer.”

 

I know that going into the store Saturday is not going to stop cancer right away, but I also know that supporting amazing organizations that actually care about those dying will. Aren’t you sick of buying something and having no idea where it goes or how it used? Well rest assured: That is not the case here. Since 2008, worldwide breast cancer incidence has increased by more than 20 percent. Mortality has increased by 14 percent. INCREASED! We need to invest in companies that support research dollars and nothing else.

 

Come hug me on Saturday, buy a super cute top and donate to a freaking awesome organization who has partnered with a fabulous shop! Thanks Christopher and Banks for choosing BCRF. Now time to shine my tiara.

And just like that they are gone....

She looked around the room and said something like "next year one of us won't be here. I think it's going to be me".  Mandi said that. And just like that a year later she is gone.

Mandi Hudson died April 11, 2017

Mandi Hudson died April 11, 2017

 

 

I will not talk about my own fear of recurrence I will only discuss what it has been like losing friends at a rapid rate. When I was diagnosed I honestly thought everyone lived that you didn't die from this disease (thanks pink bullshit for that lie). Then I met Lisa Adams via twitter and Annie Goodman and Seporah Raizer and my eyes were opened. I learned that not only cancer can come back but it comes back and attacks and kills. Yes I know I have many friends living through this stage 4 diagnosis 9 years out, 6 years and even 14 years out but what about those who die in a blink. Mandi was at the beach just a few days ago now she is gone just like that.

Seporah Raizer died April 12, 2015

Seporah Raizer died April 12, 2015

Two years ago  MetUp crew decided to stage a die in at LBBC at the exact time I got a call from Mara, Seporah's sister telling me that she was dead. Ironic that she was one of the 113 that died that day as her friends were making a strong statement-actually it's so much more than a statement it is reality. This is something I feel society is turning their back to. 113 people dying daily is an epidemic, it is a crisis, it needs attention ASAP not “making advances” . How does 41,070 men and women dying this year not make headlines??

Jodie Lanchantin died October 27, 2016

Jodie Lanchantin died October 27, 2016

 

Last year I went to LBBC mostly for Seporah because I wanted to honor her by continuing to be her voice.  I went to the Die In and even spoke about just that. About how I may not be stage 4 but I am mad, sad and demanding more for my friends who are. Our brilliant friend Mandi was there as was my sassy friend Jodie. Honestly, we had a blast! Laughing until we hurt and making memories for life. Good thing because they are both gone now. Mandi’s words haunt me for this year’s conference to the point I am not sure I can go.

 

When will it stop? When will we stop being from dying? I just don't understand why people keep dying. Where is the fucking cure we are all racing for? I know there has been advances in treatment but frankly, that's horse shit. If you were Jodie's mom or son or husband wouldn't you demand more? If you were Mandi's husband wouldn't you expect these advances to save her life? Let me explain that some of these fabulous people are not dying in a hospital bed, sometimes they are at the beach one day and gone the next. They are out with their children and have a heart attack. They are doing what they love and a blog clot takes over. When they die it does not say "metastatic cancer" it will say heart failure, liver failure, organ failure, blog clot. So how do they count? How is their death even measured? Sometimes I feel like people don't care unless it happens to them, I want that not to be true but I wonder.


Today I sit and cry at the death of a friend again. It does not get easier ever it gets worse. I want more for them for their families and for all my stage 4 friends living with this illness and dying for a cure. Do you want real numbers from someone living with this? Go read Stick it to Stage 4  and let Susan explain what a day is like.  I actually can't count on my hands how many people I know that  have died in the last two weeks, don't you find that ridiculous and heart breaking all at once?!?  I do. No tiara today nothing but a girl who had cancer and is trying to understand why she is  watching her friends die.

Photo credit The Molly Project

Will MonaLisa Touch make me smile again?

Two women with two different breast cancer stories, both wanting more normalcy after their treatment has “ended.” This blog is about their open and honest experiences with their sexual health after going through breast cancer treatment, surgery, and the aftermath that cancer leaves behind. Lisa Frost and Ann Marie Otis became fabulous friends through Stupid Dumb Breast Cancer and work together to advocate for a change in the breast cancer community.  This is both of their stories:.

 

Lisa tells her side…

There are some things that you expect to happen when you are going through breast cancer treatment.  For instance, when you are receiving chemotherapy you know that you will lose your hair. It is devastating, but temporary and expected. When you have a mastectomy you know there will be pain and scarring. When you go through radiation you know that there is the potential for skin burns. When I had my ovaries removed, I knew that I would go into menopause. Unfortunately, there are side effects from breast cancer that I wasn’t aware of or expecting. I knew that menopause meant no more periods and that I could no longer get pregnant. I was completely fine with that. I also knew that there was the possibility of mood changes and hot flashes. I most definitely experienced the hot flashes that were incredibly annoying, but I knew that those would be temporary as well. The one side effect that I was not expecting and that has been so disappointing is the change in my ability to be intimate with my husband.

 

Menopause on its own can cause significant changes in gynecological health. The lack of estrogen to the vaginal walls creates something technically called atrophy. In layman’s terms, this means thinning and shortening of the walls and the vaginal canal. There is decreased blood flow and lubrication. If you add having your ovaries removed as well as adding an aromatase inhibitor (prevents even further estrogen production), then your symptoms can be even more overwhelming. Symptoms vary from person to person, but what this generally means for women is painful intercourse. In some cases, it is agonizing. There is true, life-altering pain--there is burning and soreness. I am in the medical field so looking at this situation from a healthcare perspective, I can list all the facts; but as a woman, wife, and breast cancer survivor I can tell you from my own personal experience that the inability to get intimate with my husband of so many years  was the most heartbreaking.

 

I realize that as a breast cancer survivor I am privileged to be alive, but I honestly was never prepared that not being able to be intimate with my husband would be the longest lasting problem that I had to face after cancer. There does come a point when after cancer you try to start living your life as normally as possible, and painful intercourse was not something that I was expecting to have to deal with. This is also a problem that a lot of women do not want to talk about. It is embarrassing and extremely personal, but it is also very common. As a woman with estrogen positive cancer, hormone replacements are not an option for me, not even vaginal hormones. Loss of lubrication seems like it would be easy to deal with, right? Well it isn’t as easy as it sounds. I have talked with my gynecologist, and she suggested coconut oil. I have tried many different lubricating gels/liquids/solids that are on the market and while they do help somewhat they don’t help as much as I would like them to. I continue to experience pain, burning, and yes, even bleeding after intercourse.

 

My husband and I have been through so much together. We are actually one of those fortunate couples where cancer brought us closer together. It breaks my heart that he is hesitant to come near me because he knows how painful it is for me. It is difficult to hide the look of discomfort on one’s face during intimate moments.  What husband wants to see his wife in pain when it is supposed to be something that brings you both pleasure? This past year, at my yearly gynecologist check-up, my doctor mentioned something new that has been shown to significantly improve vaginal health. She told me about the new laser treatment technology called the MonaLisa Touch. It is a series of three treatments that has been shown to renew the vaginal tissue and has been very successful in improving the sex lives of many breast cancer survivors out there. I was so excited that there might actually be something out there that can help me. Only a year ago I was convinced that there wasn’t anything that could help make intercourse less painful for me, but now I have hope.

 

Can I add my two cents? (This is AnnMarie, BTW)

I remember when I was diagnosed with breast cancer, and I made this comment, “I can not wait until I can just be done with this.”  What an actual joke that was! I was not at all prepared for the side effects that my body was left with. I will skip right to the part that left my husband and I in an intimate hell. I, like many with breast cancer, had a full hysterectomy because of cysts and things that were growing. Almost right after the surgery the nurse asked me if I was experiencing hot flashes or any symptoms, and I was like, “Huh?” Could it happen that fast? The truth is YES! You are what I like to call violently shoved into menopause. That being said, you miss the gradual ease into menopause. That is the luxury that non-cancer women get. This full throttle is really no joke. I was still coping with my external body changes, and now had to deal with the hormonal as well.

 

Intercourse. Wow! The first time was truthfully sheet grabbing painful. I had tears streaming down my face. I know that there are many other things to keep the love alive, I get it, however, this is happening to young women and older ones that are still active! Let’s face it, does it matter your age if you want to be close to your lover as you should be?  I hate that this is just another thing we end up feeling like cancer took from us, we want it back. In saying that, I am scared of another procedure. I am sick of having them. The anxiety of all the tests, the stress, the worry. I know that others feel this way too. The anguish of yet another invasive treatment done to them without really knowing what it is. With that said, MonaLisa Touch sounds way too good not to explore more, especially considering that the company has 15 published studies to verify that it actually works, not to mention numerous ongoing studies.

 

Here is the thing though, before we connected with the brand and our doctors, we really hadn’t heard anything about the treatment, which makes me wonder, “Have you heard about it before?”  Is anyone talking about this? Better yet, has anyone reading this already tried MonaLisa Touch? I want to talk to as many people as I can about this procedure so I can hear how it helped them. I am going to look into this treatment for me. Let’s all work to get our sexy back in 2017!

This blog is sponsored by Mona Lisa Touch and we are thrilled to bring it to you. 

Posted on January 18, 2017 .

Beyond the Pink

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 afterwards 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 real 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 am 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 afterwards. 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.

Micheal Phleps looks like ME

cup·ping

ˈkəpiNG/

noun

noun: cupping

  1. (in Chinese medicine) a therapy in which heated glass cups are applied to the skin along the meridians of the body, creating suction as a way of stimulating the flow of energy.

It is not a new therapy actually it is over 3,000 years old but Michael PHELPS - Olympic | United States of America does it and people go crazy! Fact I have been doing cupping for about 4 years now. When I was doing it years ago a woman handed me a card for spousal abuse telling me I was not alone and there was help for me. I was yelling to her “No No it is a treatment”. I do not think she understood what I meant though.


I went to a massage therapist years ago who tried to work my back for the aches of surgery and my arm from Lymphedema  and Axillary Web Syndrome (Cording) . Patrick Fuller took one look and calming told me I was a mess, which I already knew. He suggested cupping, I had seen many friends getting this so I figured -why not, it won’t hurt (or will it). My back as destroyed from surgeries and having my breast removed, one arm has cording the other lymphedema so I just wanted relief. Yes, I wear my sleeve but this is life long and needs maintaining.  The cupping I do is when they light the glass jars and stick them on, he leaves them there for about 15 minutes. I sleep while they are on. They can apply them and pump them on although I do not like that style as much, I think most athletes do this type. 

Photo credit www.themollyproject.org

Photo credit www.themollyproject.org

 

Cupping gets the blood flowing and lymph system moving which can only help in lymphedma right? When you have cording the pain from the twisted “cord” is so intense you want relief but relief is popping that cord OUCH. What cupping does is loosen the webbing so the massage therapist can work it out with ease. From medication and surgeries your body harbors so much toxins, cupping releases them from your body. Now add MS to my mixed bag. Cupping decreases my pain, helps with digestive issues, increase blood flow and circulation (ummmm so important), and detoxification. It WORKS! After a session I want to schedule another so I can still feel pretty good. The trick is keeping up with it. This for me is like taking my medication I have to stay on top of it.

 

My family was not a believer so my 16 year old son needed his back worked from running he had a horrible knot. Patrick was working on him when he felt it, he told Ben he could scrap the knot out which was going to be painful and take a long time to release or he could get cupped. Ben choose cupping and he loved it. The pressure is relaxing and soothing. There is no pain involved and when he was done Ben felt amazing, He made a comment that he felt like he was standing taller and he was! See the cupping broke the knot up and relaxed his muscles so when he stood he was not hunching in pain. Ben was sold!

 

Now I know everyone is reading about the swimmers and gymnasts and other athletes doing this so they want to try it. You should for sure but my advice is to make sure the person you choose is certified and experienced. This is not for an a newbie to try. ASK YOUR DOCTOR! Please make sure you clear it with them. You will love it but make sure you are doing it right.

I do thank the athletes for drawing attention however if one more person asks me if I am doing “that Michael Phelps” thing I may scream! Next they will all start wearing tiaras…...

FYI the big spot under my tattoo is when my cording starts. When I left I could place my arm down without any pain!   

FYI the big spot under my tattoo is when my cording starts. When I left I could place my arm down without any pain!