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.

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.

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.

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. 

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.

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. 

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?

#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.

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.

Five years all good right?

My first day home with my monkey butts

What would you tell yourself if you could knowing all you do now? This is a question while working with Wisdo we often ask people we are interviewing. Whenever we ask it I think in my head how I would answer and every time it is different. Five years ago I found that stupid dumb lump, five years ago everything changed at that moment. If I could go back and tell myself something I do not think I could stop at just one. These last five years have been life changing but had I known what I know now it would have I would have a lot to say to myself. 

Five years ago I wish I would have left the damn dishes in the sink that night more. Seems silly I know but I remember so many times stressing over the dishes because people were stopping by and I did not want it messy. So stupid! It added stress to me and my family (cause they didn’t care about the dishes but they cared about me). Leave the dishes AM! Had I known how long my body would have taken to recover I would not have pushed myself so hard, I would have napped more not rushed to the gym. I had this pink perfect image of recovery and I wanted that. Breast Cancer is not pink, AM! Knowing what I do now I really would have asked my friends to help out more, I realize they need it just as much as I did. You get by with a lot of help from your friends, AM.

Five years ago I really believed that early detection was the end all cure all. They say you are "safe after 5 years", well they only research for 5 years so of course they say that. I wish I would have know that in the beginning because I was so excited to get here, now I am here and not so thrilled! I would have asked more questions about recurrence, the spread, and the death rate.The friends that I have lost I do not for a moment wish I never knew them I just wish I had known that while breast cancer does not kill when it spreads it sure does.  As much as it may have scared me when I found out later the fear was just as intense. ASK more questions! The doctor is your employee they work for you and they need to take the time for you. Uneasy then get out! Had I known that my body could have waited for reconstruction I would have waited. There is no right or wrong way to handle this and that is something I learned over these last long 5 years. I just wish I had known that at the start.

Five years ago I wish I had known just how much this would have affected my family. Tom realized fast that this was unfixable which I think was the hardest thing he has ever done. I did not understand the true depth of their feelings until my first-year check and I saw the fear. And every appointment since. The one thing I know for certain they held me up whether they realize it or not my boys did just that. What I do know is that Ben was able to write about his emotions to help others, that Sam was the one to push for that 1st Cape Cod trip that we desperately needed, that Anthony was there to snuggle Julian and read him a book and that Julian as young as he was would sit on a stool next to me twirling my hair telling me “it’s ok Momma” all while Tom let his boys see him cry just once to let them know sometimes you just have to. When I look back at five years of this stupid dumb breast cancer this is the biggest thing that I did not know, how awesome my family could be if I needed them to help me keep my tiara straight and shiny,

Together We Thrive

I sat here and thought and thought about my blog post for HealthEVoices17 which direction to take it in. I could go on and on about everything I learned in the sessions which was a lot. I could discuss how much powerful content Wisdo got by videotaping so many incredible advocates. Or maybe I should write about Janssen and how not only did they pay our expenses but they ate with us, they laughed with us, they cried but they listened to our stories. I am talking really listened, they heard our stories from their heart. I could have also written about The Tonic team and how they made it their mission to make sure we had everything our aching bodies needed. I for sure could have discussed the Impact Fund! WOW just WOW! Maybe I could write about how I stand on things I have not done that in a long time??? HMMMMM......

Then in our closed group a blog post popped up. My new health care advocate friend Michelle wrote a blog about what fucked up shit people say to schizophrenics and one of the comments hit me.

http://www.schizophrenic.nyc/dumb-fcking-sht-people-said-btw-im-schizophrenic/

And truth be told it is pretty much with many health issues. The diabetes community feels it when they eat. The RA peeps feel it when they can not move and people judge them for not moving enough. The mental illness gets wacked left and right with it for so many reasons. The HIV community lives with it and the struggle is hard. When will it end? When will people stop being judged for what others can not see or understand?

Which brings me to HealthEVoices17 and why this conference is vital to me opposed to all the others I attend. Why I care so deeply for this one. The theme of the conference was “Together we Thrive”, so true. See it did not matter to anyone at that conference if they had RA, IBD, MS, cancer, HIV, bipolar or anything in the middle. There was no judgment at all. No one carried that if you could not make it to drinks or open mic night, it did not matter if you needed a nap or more time in the relaxation room. All we cared about was that everyone was “healthy”. The concern was about self-care for the other, not selfishness. We get each other, we get the looks of mental pain, the unseen aches, the wobble or the staring off. We get the angst that others do not and want to make a difference in each other's life. We get what it is like to live with our conditions no judgment and we are still friends.

Things I am pretty proud of in the SDBC world

Together we thrive is really meaningful to me. No I do not have diabetes/RA/IMB/HIV but maybe if I share a blog post written by one of my HealthEVoices17 friends on SDBC someone there may connect with them. That is thriving!!! I could not do it without my friends living with that condition. You get what I am saying?? We need to stick together, we need to stop just sharing our story to our select community and branch it out. HealthEvoices connects us in a way we would never have a chance to. I wore many hats during HealthEVoices sometimes it was in the Wisdo video booth collecting stories which were so amazing that I was lucky enough to really listen to so may of my friend's lives. Or maybe I was connecting with someone with cancer who needed to feel they are not alone. There was the time I sat with the MS community learning about new drugs that are hopeful to me. But what still brings me to tears was after dinner one night we were in the bar area talking. A Janssen rep was hanging with us. Someone was telling a very intense story it wasn't pretty or happy but it was real or raw. Her hand was on his arm and she was hearing every word he said. Her eyes locked and he told his story. I know of no other conference where the rep will do that and do it with kindness. What a way to thrive! 

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

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

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

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. 

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.

Mesothelioma, say that again??

Mesothelioma,  what the hell is that? I read once there are over 200 cancers so when I heard this I know I was going to be on the cancer track. Damn that track sucks!. The technical answer is mesothelioma in it’s most common form is the cancerous type, usually affecting the lungs. It can show signs like a cough, chest pain, and shortness of breath. Mesothelioma is a type of cancer that can be found in the lungs, lining of the abdomen or heart that's caused by exposure to asbestos fibers. It is most  commonly caused by exposure to asbestos because it does not show up until 25-30 years later the cancer is more likely to spread cause it difficult to treat.  Treatment is typical and may include surgery, radiation, and chemotherapy. But what about the emotional aspect? We all know that cancer is not just a scientific problem that the mind and body are greatly affected.  To understand I will tell you about a friend Heather Von St. James.

Heather was diagnosed with mesothelioma early in her life from being exposed by wearing her father's work coat. Yes it can happen as simply as that. Asbestos comes in the form of fibers that become dangerous when released into the air. This happens when the asbestos itself grows old or becomes disturbed. When receiving a mesothelioma diagnosis, a patient's prognosis is most likely going to be poor. Heather was given just 15 months to live and this was  just 3 1/2 months after giving birth to our daughter Lily. I know so many that get a cancer DX after having a baby. I can not imagine the emotions they go through. Heather was only 36 and the news of this was difficult to say the least. Heather  underwent extensive thoracic surgery, known as extrapleural pneumonectomy, with adjuvant intra-operative heated chemotherapy. She was declared NED (no evidence of disease)  later that year. Her recovery from the disease is unique because malignant mesothelioma is a rare, aggressive cancer usually seen in older patients. When treated the average life expectancy is 6-9 months, Heather is a rarity for sure.  

Heather is a complete badass advocate because she has overcome so much with this cancer she is the voice many need to hear. Heather advocacy is to get asbestos banned and removed from buildings to eliminate others going through what she has.  In her recent blog she started it by stating “I learned early on in my cancer treatment what a cruel, unfair thing cancer can be. It doesn’t care who you are, how old you are, or how much money you do or don’t have. Cancer has one purpose, to destroy the host, no matter who that host is – and many times, it succeeds.” This statement was so true to me I felt that everyone must know Heather’s story.  There is so much to cancer that people who have not been there do not understand and Heather does an amazing job of stating that, as I always say “cancer is cancer”. No matter what type you have we need to share each other’s story and help stop this unforgiving disease.

About 3,000 people are DX with mesothelioma each year and 2,500 deaths every year-that is horrible odds! I think we need to start by looking at the way we are exposed to asbestos. Military, construction workers, commercial and second hand exposure are all ways we can be exposed. Read more and know if you are at risk. If asbestos is still not banned in the US that means our work, home and where we shop is still affected.  We also need to find out how we can ban and remove it from our lives. There is legal help out there too. Know your rights!

On September 26th Heather is “Dying to be Heard”. Join Heather and me in spreading the word because no one should get a prognosis of 10 months to live.

No tiara today

I couldn't get out of bed today but I did. I couldn’t walk on the treadmill but I did. Not because I wanted to but because I needed to push as much as I could.  I did however get in the shower but I could not get dressed without tears of pain. Screaming for my husband to help me my body was frozen in such pain, legs numb and tingling, eyes blurred and hurting. It took thought to make my legs move, it was like my brain was not reaching them. He helped me to the couch slowly each step so excruciating my tears were uncontrollable. His eyes filled up with tears and fear. He gently helps me to the couch wincing as he does- scared he will make it worse. I lay there not because I am lazy but because I can not do anything else. I moved slow throughout the day each step hurts as my foot hits the floor, I can not feel it but the pins and needles remind me it is there. My face tingles to my lips causing me to feel like I am going mad, maybe today I am. The right side is not only numb but tingling so much. My right eye is blurry and aching, I am having floaters all day. The spasms in my leg jerk my body which makes my back pain sting. By the end of the day I am dragging my right leg and needing assistance walking even ten steps. I notice my clothes are on inside out but at least I am dressed. The kids make dinner and the worry sets in their faces. When mom can't cook she is hurting in a way that scares them.

I work pushing through the pain. Laughing and trying to stay focused yet each breath is a reminder of the hurt while my legs are numb no matter how I sit. Work, pain repeat until I can not take it any more. I must sleep, laying down finding a spot that is not too awful I crash hard to the sound of kids playing, lawn mowers, birds things that usually keep me awake. Not today the pain, numbness, the tingling is overwhelming.  My eye aching and the blurred vision was too much to take today.  Is this how summer is supposed to be, where is my tan? Pain is exhausting, real exhaustion. I was a true spoonie today!

Just because I do not look sick does not mean anything. The pain is so real and intense I wonder why others can not see it. This is not a pity party, this is not searching for sympathy. This is nothing more than the reality of a relapse with MS. This is a day that I may seem fine on the outside yet inside my body it twisted in pain. Today there was no tiara.