My Other Side of Breast Cancer By Marianne Sarcich

This is a guest blog post by Marianne Sarcich

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.

Worthy

**************************************TRIGGER WARNING********************************************

Just eight minutes, but it felt like forever. I sat there  dumbfounded wondering if that really happened or if I was so drunk I had  imagined it. I was fifteen years old at a party. Like always my boyfriend and I were in a huge fight, so I was flirting with a guy he hated. Typical high school drama. I was drunk which was actually unlike me because I hated to feel that way, but I was in a horrible mood.

I was sitting on the couch and this guy who was three years older and real trouble was next to me. I knew better but was so upset I couldn't think straight, plus the alcohol. My best friend was sitting on the arm of the couch. The guy was inching closer to me saying all the right things. “You are so cute” playing with my hair. I can still smell the room. His hand landed on my thigh. I told him to get his hand off of me. He rolled his eyes. I was so confused as to why was he touching me. I did not want to kiss him, I was just trying to piss off my boyfriend. He moved his hand into my pants right there with all those people around us. Grabbed my breasts and I said, "get your fucking hands off me now.”  His eyes showed no care. He laughed and I was scared, I never got scared. He shoved me back on the plaid couch that was so scratchy-- hate that material now. My friend was frozen, not her fault. He unzipped his pants, how could he be aroused? This was disgusting. Looking at me he pulled my pants down just enough. No one paid l attention. I swear I yelled but nothing came out, the music was loud and I am sure everyone thought we were “making out.” He did it and that was that. I sat there so shook. He zip up and said "you ain't worth it," and like that walked away. It was that easy, for him.

“Our worth is a value that only we can place, not someone else. Not someone trying to steal a piece of our soul. When we stand up for ourselves we are proving just how worthy we are. Even when we say no and the unspeakable happens, we are worthy.”

It was only eight minute but I felt it lasted longer, I stopped breathing for that time. I grabbed my best friend and as  fast as we could we ran to the bathroom and I threw up. My whole body hurt. I told her what happened and she cried because she had seen and could not stop it. We sat on the bathroom floor and cried and I wondered how did I get here?  She knew I couldn't tell anyone. If I told my boyfriend he would have gone after the guy.

About a month later the guy ended up in jail. Looking back I realize I should have told someone, but I was so scared of what would happen that I couldn’t. Telling my bestie helped me get the emotions out and that was what I needed the most. I do not think we have spoken of it since but at certain times she will text me or remind me and I know she remembers.

The worst part wasn't the assault because I felt like I stood my ground. The hardest part was when he told me I was not worth it. What was I not worth? A rape? Sex? I thought about that for days after months really and any time I see "you are worthy.” What was I not worth that night and I am glad I wasn't? That makes me even sicker than what happened.

Our worth is a value that only we can place, not someone else. Not someone trying to steal a piece of our soul. When we stand up for ourselves we are proving just how worthy we are. Even when we say no and the unspeakable happens, we are worthy. I recently sent a tweet/post out and a guy who I went to highschool with “liked it.” Well he was more than a “guy” we had dated. He was pretty awesome, but I always thought he was too good for me. Mostly because I did not feel worthy. He had no idea that if it was not for him I would have never felt worth as a teen or loved. we would drive around parking in a local park and one night actually said “that was so worth it.” I realized that I was  more than that attack. But the truth is, when he reacted to my post it validated so many years of feeling less than. I sobbed when he did. I am worthy.

When my oldest son turned sixteen I got sick. What if he becomes one of them? Then the second son and I felt sick again. Where did we go wrong in our society that this is acceptable? That you feel  scared to say you were attacked? That some men think it is ok? I raised my boys from the beginning to ask permission, be respectful, never be with someone under the influence, make sure you have protection and always always remember that person is worthy.

Sometimes you remember something and as you grow older you wonder “did that happen or is that something you made up in your head?” I reached out to the boyfriend that found me worthy. He was blown away by what I told him. He had no idea what happened to me at that party. He did however remember the night we were together in more detail. He told me a song that was playing on the radio and corrected what he had said to me as he left. “YOU are so worth it” were the exact words he told me. I cried hard when he told me this thirty years later. He will never understand what he has meant to me or how he saved me. I realized I was not making it up to feel better that he really said it to me. The fact that he told me I was worth something validated my emotions. It was not the moment he found worthy but me. I am worthy. It wasn’t because he told me I was it was because he made me feel I was. He gave me back my worth.

College

Yes I usually blog about cancer and other crap that I rant about but shit this is my domain so I will use it as I see fit. We had the joy of dropping the oldest off to college this week. It was incredible. I am not sad at all. I am not nervous or worried like you would think. Does that make me a bad mom? I am sure some think so but their opinion is irrelevant for so many reasons. My oldest has OCD which he has freely discussed and anxiety which running has helped curb so college is going to be an exciting adventure. Frankly he has been a complete ass these past few weeks and we are thrilled to get rid of him. No I am not a cold-hearted bitch but I think it is a coping mechanism that kids do to defend their fears. They need to build a wall up so they do not run in the other direction all though we almost beat him down.

My husband and I worked hard to raise these kids to be kind, respectful humans and then for them to leave and go live an amazing adventure. College, travel, bottle collecting across the world we really do not care just go! Figure out who they are and be in the world beyond these four walls. Watching the first one take flight has been so amazing. Seeing him succeed on his own, choose a college, make some mistakes and own them while learning knowing full well you had a part is so freaking cool. I am filled with pride, How can I be sad as he goes off to college? This is his time! And I can not wait to watch him evolve into a really great man. 

Am I nervous? No. He may fail or need to come home or he may soar and have the best time of his life either way he tried! He is doing the best he can with all the tools we provided. He is ready for this adventure and we are so happy for him. He is nervous, yes but he is processing his anxiety and learning from it. Whatever the outcome he is trying. And that right there is enough for me. He is not lying or being fake about any of this, staying true to who he is. Honor and loyal all around. 

Are we fearful? Hell no! He is smart but ready. Time to take risks and learn when he screws up. His fear is guiding him and he is not ruining from it. I am so proud of that. Being 18 is about living life and knowing it is ok to screw up, be scared and learn every step of the way. That even then we will be here but that we will not be able to get you out of it so make smart choices. 

I am completely ok with this, Tom has been a little emotional but more because we are so proud of what he has accomplished on his own. He took ownership of all this we are just here to support. What a great job that is?! His passion has driven him now it is time to take it up a notch. Plus he eats a LOT so getting him out reduces the bill by a significant amount.

When your kid goes off remember all that you have done for them how you set the stage for them. It is their time to perform and you to sit back and watch. What an amazing show we are in for! 

Things to make surgery suck a little less

When you are diagnosed it isn't just about doctor appointments and making sure you have all of that in order it is figuring out what you need for your upcoming surgeries. This is a list that has been compiled through many different people and what they found most helpful. What may work for one person may not for someone else. Did you have something that worked for you that would like to share, please comment!! We need to reach out and be there for each other....

-Set up a table next to the bed so everything was within arms reach. The first few days the less you have to move the better (for me anyway. I put my meds, music, ipad, phone everything I needed close by, the major pain for me was the drain where they were stitched to my skin, when I moved it would pull and hurt.

-A notepad to keep track of your drains and the amount you dump. Plus keep track of your medication. There is also the Surgical drain app.

-A couple of cases of water and opened one case and put them out on the table and used one of those plastic cups with the plastic straw. Easier to -sip a straw then tilt a bottle

-A eye patch and ear plugs to help in sleeping, this worked great!!

-Button up jammies.

-AnaOno has a fantastic after surgery products!

-Button up shirts to go to your follow up appts. There are so many products to make this easier. Radiant Wraps is my favorite.

-You can’t shower for a while, so I bought Facial cleansing cloths and also -Body cleansing cloths to clean your parts.

-Can of dry shampoo, absorbs the oil.

-If pain meds bind you up (like they do me) you might want to start taking a stool softener a few days before surgery and keep taking them as long as you’re on the pain meds rust me, you DO NOT want to get bound up.

-An ipad or tablet or computer right by you to help pass the time.

-Back scratcher

-Lots of pillows, as laying down was not an option. A lot of people actually borrowed or had a recliner to sleep in was the most comfortable to sleep.

-Satin PJs or sheets make it so easy to get in and out of bed.

-The drain pouches are great for keeping those stupid drains in one spot and keeping them from tugging. So many drain solutions Cancer Be Glammed as them all on her page

-A recovery cami is comfortable and ideal

-The husband pillow is a great alternative to a recliner

-Change your shower head to an adjustable one, makes showering so much easier!

-Pre-cut snack like veggies and cheese sticks helps to stay healthy while sitting around and not being able to cut up those items

-The Fishbellie (corn bag) was PERFECT for both heat and keeping cold!

-Draw string pants are fabulous!

-If you have children have a basket of new books, coloring items, movies that you can pull out when you just need a break

-gift certificates to local delivery restaurants when there is no way you can cook

-ANY opening in the front bra is a MUST

-The Zip up makes a cute hoodie for hiding those awful drains

-A pill holder for all those meds

-An organizer for all your information.

-Those hot flashes come fast, have a fan ready

-EzBra is a sterile, disposable bra that you can take on and off with ease. I hated that ace bandage wrapping I felt like a victim and always needed help getting it on and off. EZBra you can do yourself

Sunday Sauce

Sometimes a little chaos reminds us of what matters

We start the week with Sunday dinner. It gives me purpose for the week, a smile on my face and a reminder that all things in life matter but it is the little things that bring us joy. Sometimes I may curse it "Of course Dad we are having dinner ugh" but the reality is it is my heart. From start to finish it may only take 2 hours, the table may extend 3 long or it may just be one, it is filled with family and friends, great food and a lot of chaos. It is the perfect reminder that food brings people together and that no matter what these wild, wacky intense people do they will be there to support and love you. It is how my week starts and by Thursday I am craving and planning Sunday dinner. My kids have fell in love with this tradition and know that they can bring friends but that Sunday is for the family. They will walk into adult life with a tradition that will always bring them to people that love, support and are loyal to them no matter what. Some Sundays it may seem like work but once we are around that table it fills me with the love and gratitude I need to survive. And it all starts on Sunday, which makes my family ready for the week! 

Over a pot of sauce, some meatballs, salad some great bread and cookies we simply touch base put our phones down (well most of us) laugh, connect and remind one another that we are a family. Maybe the week sucked and it was hard to get through and you do not want to talk about it, that is ok cause someone at that table will crack a joke. And for a moment you forget just how bad your week was. Maybe you had a great week and you want to tell everyone, perfect cause during the passing of the sauce you can share that story. Damn sure that someone will give you a high five and spill their milk only to erupt in more laughter. That is not to say there is not an argument or disagreement, someone wanting the last scoop of rigatoni. Point is for just 2 hours we are together. And when Sunday Dinner does not happen you feel like something is missing. I consider it my therapy in a way. Through cancer, through dementia, through divorces, through just crap Sunday dinner is there. That consistency gives me balance. 

Recently, Sam wrote a paper about family. The first thing he talked about was Sunday Sauce. Sometimes I wonder if it annoyed the boys that this was an "every Sunday thing". But frankly, I do not give a shit they can take 2 hours out of their week to spend with cousins and grandfather. Then I realized by reading Sam's paper when he said "This is a tradition I plan to keep" they actually like or better yet LOVE it. Chances are they will not all live in the same town but if even once a month or year my kids and a few cousins came to the table for Sunday Sauce amongst their chaotic lives to find a little balance with each other, wow just wow. I would think that it was worth all those pounds of pasta. 

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.