PTCD

This was written by my BFF Lisa Frost.

PTSD, Post traumatic stress disorder is something we all think of when talking about veterans that fought in battle or being victim of a life-threatening crime.  Obviously fighting in battle is a huge stress on a person’s mental well-being, but PTSD is a term that can also be used to describe the aftermath of an experience with cancer as well.  A good cancer buddy of mine and I refer to our personal “syndromes” as PTCD or Post traumatic cancer disorder. We felt guilty putting ourselves in that same category as war veterans and victims of crime.  Looking more closely at it though, I am not sure why we would feel guilty about it. Cancer is a life-threatening illness, it definitely messes with your head, not to mention your body and state of well-being. I have a friend that started chemotherapy a year before I did and is still going through it now, a year after I have finished. The things that her poor body has had to endure in order to stay with us on this planet makes my head spin just thinking about it. I am amazed at all that the human body can tolerate and still function.  PTSD after living with cancer makes perfect sense to me.

You get diagnosed with cancer, you have surgeries (7 for myself) some successful some not so much. You have a port placed (yet another scar), breasts removed, ovaries removed, 20 weeks of chemotherapy, 7 weeks of radiation, 5-10 years of hormonal therapy, and a lifetime of lymphedema issues, just to mention a few. When all is said and done people see you “living” and they think that everything is fine. You are excited to be finished with treatment and to get on with your life. You think that it is all behind you, but then you start having dizzy spells. You have never had these before and suddenly you think, is it back? Did the cancer come back and now it is in my brain? The fear creeps in slowly, you start looking up the symptoms of brain mets on the computer and the symptoms you have match. By the end of the day you have yourself dead and buried. You can’t sleep that night because your mind won’t stop playing over the scenarios of telling your children that their mother is going to be sick again, the things you will miss in their lives when you are not there. The fear that your poor husband will have to pick up the pieces all over again and how can he possibly handle all of this so soon?  The next day you make an appointment with your oncologist to discuss the symptoms you are having and before you know it you are getting an MRI of your brain to rule out brain mets. The MRI is negative! You can breathe again. You have escaped recurrence… until next time. A month later you start having pain in your shoulder, the same side that your cancer was on. The steps repeat themselves. You are back on the computer looking up the symptoms of bone mets. It doesn’t help that a friend of yours that also had breast cancer has had a recurrence recently in their bone. Your cancer was the same is theirs. The mind games begins all over again.

I am not a hypochondriac by any means.  Before I had cancer I was rarely sick with anything, even when my kids were sick. I had never been to the emergency room, never had been hospitalized, and never had surgery. When I was first diagnosed with breast cancer I really thought it was a joke. I had no symptoms and felt terrific, even though my tumor filled half of my breast and 24 lymph nodes had cancer in them. I am a nurse and I still didn’t believe that it could be true.  Now, 2 years later, every new ache and pain that I have is the cancer coming back. I am an optimist by nature. When my surgeon told me that I had a 50% chance of recurrence the numbers meant nothing to me. I didn’t focus on the statistics. I am a glass half full person, to me that also meant that I had a 50% chance of it NOT recurring. Now after being thrown into early menopause and having my body deprived of pretty much all circulating estrogen I feel a lot older very quickly. Aches and pains are a part of the normal aging process. These days it is hard to know what is normal and what isn’t after all of the trauma that my body has been through. I remember texting a fellow breast cancer friend while waiting in the office for my oncologist appointment. I was feeling silly for being there. I asked her if she experienced these same issues after she was done with treatment. This was my first time being paranoid. Her response literally made me laugh out loud in the waiting room because I knew that she wasn’t lying. She said, YES, of course she did. Initially every day, then every week, then every month for the first year. I didn’t feel so bad after reading her response. This is a very normal fear for those of us that have had a life-threatening illness.

When I think of what helps me the most with my PTSD is sharing my fears with all of the incredible survivors that I have come to know through the internet, social media, support groups, friends of friends, etc. There are so many of us out there that have been through this and know exactly what the fear is all about. Support and a shoulder are huge for me. I know a lot of survivors that feel the same way. We help talk each other down from the ledge so to speak.  Like any other negative stress in your life healthy diet, exercise, deep breathing, meditation/prayer, great music, and wonderful family/friends are always helpful in dealing with PTSD after cancer. Some degree of PTSD is normal for all of us after finishing cancer treatment, but if it starts to effect your ability to function on a daily basis then it is time to seek help professionally.

Growing Stronger Together

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

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.

Crossing over

This is going to be a relatively odd post but if you know it me it all then odd is my middle name. So you all know I work for breast cancer page . It was a fantastic page for support, tips, blogging and products you need to get you through cancer, breast mostly but we do help many other cancers and diseases. I was lucky enough to be really helping people through this process when I spend time with them on the phone. We bond instantly when I state that I understand because I had cancer too. They know they are not getting a load of crap and that I really want to help. Not going to lie I get the occasional every day person that is shopping for them self and never had cancer,  they tend to be a little righteous but hey everyone deserves to shop. 

Every now and then more every than now. I get a transgender or cross dresser looking for breast forms and bras. Wacky right? Not really! After chatting with several I have come to realize that they are very similar to us in many ways. They did not ask for this process and have low body image, they want to feel fabulous and strong, they also want society to understand and maybe change the way we look at them. Sound familiar right? Thee are raving femininity and style for their body that seems to not really be working in that direction, DAMN I get that!

When I woudl sell a breast form to someone with breast cancer I give them confidence that they did not have before, they feel like them self simply by placing a silicone form in their bra. The truth is that is not any different when I talk to someone who is a cross dresser or transgender. They are lacking self esteem and struggling with their identity much like us after cancer. When they find that perfect form BAM they feel whole, complete. They are struggling in a body they do not know what to do with, I can relate to that. Transgender and Cross dressing community want to fit in and just find a way to be "normal", so do I! They want to be fabulous and feel good about themselves under their clothes, isn't that how to start a day? Again I get that, I struggle with the right bra, underwear and my friends can not find the breast form they love. This may seem trivial to those who have not had cancer but to us it is sadness and defeat. We want to feel sexy and pretty in a confused body. Again when I help the transgender/cross dressing community this is the exact message I hear.  Am I comparing this with cancer? No frigging way but I can understand the mental aspect of this. Cancer is part mental and physical change so the understanding is natural to me.  

Maybe you are ready this and think that their way of life is wrong and they should not even be doing this. That just makes me sad. Did you forget that everyone is fighting a battle you know nothing about? That one person should never be judge by another. I wonder if we just stop judging and putting pressure on each other and  instead tried empowering one another what a change the world would see. If we embraced and understood the scars that breast cancer left and maybe gave those in the transgender community a smile instead of a stare how everyone would react? Maybe heads would be held a little higher with a little more swag!

I will admit I do get a little nervous they will steal my tiara, good thing they are my queens and I am their princess! 

Tell me what you need

The other day a friend sent me a text asking both TFO and I “what is the one thing we wanted from people when you were diagnosed?”. I loved that she asked this almost 6 years later not because it doesn't matter anymore but because she still cares enough to be thinking about it. That to me says a lot because the truth is that after the DX we still are living through this every damn day. I still have doctor appointments, I still see my scars and I still think about it coming back, so her question meant the world to me. I often post and blog about “what not to say or things people do that they should not” but hardly ever do we talk about what they got right. My good friend really got me thinking, plus I posted it on Facebook to ask the SDBC team because they have all the answers. And the overwhelming response was “show up”, “be there”. Check them out here. I think people are looking for what to bring or what to drop off but honestly we just want to be normal for a fleeting moment. We need that little slice of normalcy when our world is being turned upside down.

The truth is not all the people in your life can make you dinner or take your rotten kids. I learned that from another good friend. One of my BFF’s said to me “Look I can not cook for you and you have too many damn kids so I will take your picture.” At the time I remember thinking “why the hell are we doing this and what the hell are we going to do with them”, well that is all history now. Point is that was what that friend could do for me. Another friend came over and just vacuumed, she said nothing to me just vacuumed. A few of my close friends came by when I was all drugged up and watched crappy movies and laughed and that was wonderful. Some people brought food and took the kids all super awesome. Some stayed away too which I do understand as well but that was for them not for me.

The best thing anyone can do is just be. Be who they are on a regular and not alter that in your life. Maybe that is holding your hand and saying nothing, or dropping off paper products but not staying, or simply taking your kids to school. The fact is when you are going through crap it is really hard to ask for help but you need help so when people just do it the results are a win win. We need so much but require so little. A hug, a hand to hold, a shitty joke to laugh at, inappropriate socks, a cure of cancer-any of those will do. But do something cause doing nothing just hurts. Do not make the person struggling reach out and ask, jump in and be the awesome friend you are. Sometimes they just need their tiara shined, it is that simple.

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