Posts tagged #mastectomy

Numb

This is a guest post from a dear friend that wants to remain anonymously. The words are her’s and they are powerful. The images are to show you the difference in many



I envy other women’s nipples. I don’t want to be the weirdo who stares in a yoga class, who vaguely remembers what it was like to feel self-conscious about my own hard nipples at the end of a sweat session. Such a simple thing, those two sensitive nubs. 




One of the things well-meaning people like to say when a friend is going through breast cancer is, “At least you get a free boob job!” It’s something I heard more than once. But rarely are the final products larger, fuller, or prettier than the breasts they’re replacing. A mastectomy is not a boob job. It is an amputation, a cleaving off of one’s cleavage, a removal -- one hopes -- of disease.




It is a strange thing to shy away from taking my shirt off in front of my husband when the lights are on. I’ve turned my back while undressing since just three years into our marriage. I wasn’t always so modest. My twenty-five-year-old self in her low-cut shirts and dancing on tabletops could attest to that. Despite reconstruction and expensive tattoos that look like real-deal nipples, I am self-conscious about the purplish-blue scars that run across the lumps where my breasts used to be. Despite my husband’s proclamations that he doesn’t care what they look like, I do. I am envious of women who seem to embrace their scars so readily, especially on social media. Am I the only one who loves the story these scars tell, but still has a hard time looking at them?




But the toughest thing about my post-mastectomy “breasts” is that they have no sensation. According to this article, I am not alone, though doctors mostly don’t mention it at the outset. Perhaps they think: Be rid of the cancer, and all will be well




Sometimes I can almost sense the sudden contraction I used to feel when I walked into a cold room, like my brain still sends signals to flesh that is no longer there. When my second baby was born, I would “feel” the internal pull and tingling that used to precede my milk letting down when nursing my firstborn. But on the outside, my skin is mostly numb. Nerves were cut during surgery, and the sharp zings I once felt tearing across my chest, signs that my nerves were regenerating, stopped years ago. 




Seven years later and I still miss my nipples. I miss those nerves-regenerating zings, even. I hadn’t realized how much I’d relied on my breasts, sexually, until they were no longer participants in bringing me pleasure. These new ones are all form, but no function, like Barbie boobs (but less symmetrical). And so I will occasionally be the weirdo staring at other women’s chests after yoga.








Posted on September 3, 2019 .

Things to make surgery suck a little less

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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


Spouses and Cancer

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

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

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

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

 

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

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

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

Posted on November 21, 2017 .

Micheal Phleps looks like ME

cup·ping

ˈkəpiNG/

noun

noun: cupping

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

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


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

Photo credit www.themollyproject.org

Photo credit www.themollyproject.org

 

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

 

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

 

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

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

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

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

 

Cancer is offensive

If you find offense in this how can I possibly accept myself

If you find offense in this how can I possibly accept myself

I could start with I am sorry you are offended but fuck that! Sorry NOT sorry as the youth of today says. I had a picture flagged and removed from Facebook that should not have, it is within the guidelines. But someone found it offensive calling it nudity. It was a reconstructed breast which is FAKE with a prosthetic nipple FAKE again. I try to figure out who would report it and my first thought is someone who has never had cancer or any illness effect them so deeply. So let's start there shall we?

 

You know what is offensive? Being told you have a choice of having your breast amputated or a lumpectomy that may "deform your breast" that is exactly the words I heard. You have to choose one and which ever you do will change your body and mind for life and you have no choice but to pick one. No one explains how destroyed you will be over this in the end you just have to do it. Offended?? Having plastic tubes come out of you to release fluid from your body that is offensive, humiliating and inhuman. Naked at every appointment having every doctor and nurse look and feel your once private breasts, that is what nudity is now! The fact every woman I talk to spends at some point time crying in the shower because of how cancer destroyed their body as imperfect as it was, is totally offensive. 

I am the one that should be offended

I am the one that should be offended

 

I am offended that my "boob job" did not work and I had to have a 10 hour surgery to get some sort of breasts. Now I know now I did not have to have reconstruction but at the time I thought I would "offend" people without breasts and I did not have the courage to go flat. But that is a different blog post. I am offended that because I did not see these options on other woman I had no idea what  I could do. I am extremely offended that I had to have my nipples removed which I never knew would make me feel so blank. That my body is covered ins scars that remind me daily I had CANCER.

Offended that I am a rag doll now sewn together   

Offended that I am a rag doll now sewn together

 

Offensive is having your body radiated to make scars, cancer, pain all dissipate just a little but never terminate it completely. I am so offended that I lay naked on a table while a machine burns my skin, I lay there alone because it is too dangerous for others to be there with me. As they close the metal door I am scared and naked in all senses of the word.  Or the people that lose their hair because of chemo as they on the bathroom floor vomiting from the drugs being pumped in them. That is offensive!

Two days after surgery and radiation, this is offensive to me!

Two days after surgery and radiation, this is offensive to me!

 

Cancer offends us every time we have a scan and we wait anxiously for results that will change our life. I am offended because I know that the answer could mean death which scares me to my core or paranoia which makes me mildly embarrassed.  Cancer is offending me and my friends every time someone is DX metastatic or dies. Why isn't this the most offensive? I am extremely offended that society does not seem to want to acknowledge this and would rather paint a pink world for us to look at where everyone survives and gets a boob job. I am offended that they took my color pink and made it about cancer, a color is not a disease. 

Cancer killed this beautiful friend, that is where people should be offended. 

Cancer killed this beautiful friend, that is where people should be offended. 

I am so offended that people do not take the the time to understand that mastectomy pictures, nipple tattoo, nipple prosthetic on a fake breast are healing. When we see the image we see our self then we realize we are not alone.  In that image we are all the same. We see that we can get to the next step that the surgical glue goes away and somewhere in there we are still us, a new creation yet the same. Looking at these takes the scary out just a little helping us prepare for what we need to do next. 

I am saddened and offended that I now have fake nipple and breasts both with no feeling

I am saddened and offended that I now have fake nipple and breasts both with no feeling

 

If you had cancer and these offend you than couldn't you just move on? Just like we all handle cancer treatment different we need to respect how we heal from it. Maybe you are offended about the doctor dancing through her mastectomy did it occur to you to find out why she needed that? That person sobbing every day does she offend you? It is how she is healing because her personal life is a mess on top of cancer. That girl that wore 6 inch stilettos through her surgeries and treatments-that gave her the courage to stand tall during it and not let her family see her fall. And those images that you find offensive and consider them nudity.......they are helping people survive an incredibly debilitating disease. By calling them offensive you are saying that they are and only hurting them more. Was that your mission?  If we do not accept these images how can we accept ourselves and move pass what is happening to our bodies?

I really thought we were pass this but apparently not. My 15 year old son does not like when I post the images because well he is 15 and is worried that someone may hurt my feelings. But he respects them and knows they help a lot of people. My 13 year old is proud that we all have the courage to post them because he sees strength. Neither see sex or nudity or are offended. I leave you with this if two  teenage boys can respect and see the truth in them why can't others? 

Laughing is not offensive but sitting there with tubes, amputated breasts and the fear they did not get all the cancer is by far offensive   

Laughing is not offensive but sitting there with tubes, amputated breasts and the fear they did not get all the cancer is by far offensive

 

 

 

 

Stupid Dumb Breast cancer of the metastatic kind

Terminal -Stage IV is terminal. Sorry this is not going to be this pretty blog post about how early detection saves lives and mammograms are our salvation. I am not going to talk about celebrations and last chemos as great as they are. I am unfortunately going to talk about death because that is what stage IV or metastatic disease brings. We need to flip the cancer page that started on the early detection/mammo page, that was a great beginning but we need a new chapter. One that dives into a chapter that no one seems to want to discuss expect those who are dying or dead and those of us who are sick of losing our friends.  Back in the day we didn't discuss self breast care and now we do, kudos let's move the fuck on people are dying as in dead.

108 die every day from this disease. Yes you can die from breast cancer. No you can not die from it in your breast it is when it metastasis to other parts like organs and bones .  Here is a little fact just because your cancer is caught early does not mean your cancer can not spread later so it is important to know and understand this beast, right? Now do not stop reading cause you are all freaked out educate yourself people and advocate like you did for early detection. About 6% are DX metastatic right out the gate, imagine that? "Hi you have breast cancer and it is terminal. Have a great day".  I do not want to hear that is a small percent cause if that was you it would not matter that number would seem like a million percent. About 30% of us who have had breast cancer will become metastatic-yes you read that right and it is messed up. Here is the most messed up part, 2% of ALL the bullshit fund raising goes to metastatic research. What was that? Yes 30% are DX with stage IV yet we give 2% to research the freaking disease that is KILLING them.   I am not making this up. Check Metavivor 100% of their money goes to research.  We have made little advances in 40 years. you can try to argue that but the fact that a good friend dies in February then another in April tells me we are not doing enough not even close. What is so fucked up is that we do not give into metastatic research because people die. Yes that is part of the reason. "They" want a great result when researching and when you are going to have death that is not so good but if we do not start somewhere ho are we going to get to greatness? My sons took Seporah's death just as hard as I did and Anthony said "Don't they want to save her"? So I think that should be the question, don't they want to save people? Point blank! 

Here is my thought and trust I am not a scientist or a researcher. If we actually gave money to STOP people from dying and then researched why they developed it then maybe they can figure out how it spread. I am no rocket scientist but you can not research shit if people are dead! Here is another thing that frosts my balls- those with mets can not enter most trials because they are "too advanced". Well they would not be there if we would have been giving the funding to research the frigging disease! My beautiful sassy wise ass friend said when she was alive "research me I have stage IV cancer"- Seporah was right but now she is dead so we can not research her and understand why she became metastatic at 32. When my aunt became metastatic her daughters asked me "Amie (yes that is what my family calls me) what did we miss?" Nothing I told  them. My aunt had BC 15 years ago and her bones ached from tamoxifen and arthritis and from being 75. So no one was thinking mets but why weren't they? They should have went right to that. But that is the nature of this beast, she was DX on a Friday and 2 weeks later dead. I sat in her funeral and wondered is this my destiny? My dad was next me and I think was thinking the same. See if we do not do something NOW it actually is, maybe not mine but my friends and to me that is mine. When will we stop ignoring those with metastatic cancer and start listening to them since they are the ones dying?

I do not have mets so I do not know all that comes with this disease but I do know that those with it need our voice. And I know we have to listen to theirs. This is not about dividing cancer because I had Stage I and you had DCIS and she had Triple neg and he had Lobular and she is metastatic this is about getting together to stop the deaths.  We had an out break in the winter of the flu and people lost their shit, 26 children died from it which is gut wrenching. Yet every year more than 516,000 die from metastatic breast cancer and we keep  slapping on some  pink bull shit and saying it is early detection and saves lives. Does that makes sense? Not to me. And I  fucking love pink, but for NOT breast cancer you dumb asses. 

When Seporah died I did a few things-1. swore I would not say she lost her battle and I would punch people who did. It was not in a battle she was in life. She not lose anything she died because cancer took over her body. 2. I said I would use my big ass mouth and keep her blog "Cancer messed with the wrong bitch" going around because you never know who her words could help. 3. I would not stop telling people that cancer kills. That those with mets die, they deserve more than a head stone they need funding to stop the death otherwise we fail them. That cancer is never pretty no matter how cute you try to make it, that all those campaigns offend us and actually do more harm for the metastatic community. The negate and make cancer look easy and sexy two things cancer is not. Which in turn make it hard to raise the funding needed to research. 

Does being metastatic mean a death sentence  right away? I am not sure but I do know that we need to stop talking numbers, start showing research that is working and start seeing all the faces and hearing the stories of those LIVING with this disease. Ask them what they want to be done with their DX, after all it isn't all about me and my tiara. 

 

 

Burn Baby Burn

For Surgery number 7 or is it 8 who the hell knows I had no desire to go for the stiletto look.  Cancer can have $1 Old Navy flip flops that I gave to Meg after. Screw this bulshit. I went in with a full blow migraine, yes migraine into a quick operation on Tuesday June 16th . Doc asked if I wanted to try local anesthesia and not get knocked out, I asked him if he was "fucking crazy", please put me to sleep . The scars need to be cut out and I do not want to remember a thing. After the quickie in the OR if only it was a joy ride, I was literally rushed over to radiation, yes that day! The nurses were a little perplexed and frankly freaked to send me off but they went with it. 

 

Rads is weird, no really it is. The staff was amazing over the top to say the least. The idea is to kill all the tissue and any cells that are hanging out to zap the hell out of them before they have to grow.  Now please keep in mind that while I just came from OR I still have a migraine, am starving yet nausea  and now am waiting to be radiated so I was in no mood to joke. And guess who was with me?? TOM-the joke master extraordinaire. . Not a great day but Tom and I used it as a date night, hell there were no kids so why not. His humor got me through this crazy day. So they make the mold, set you up, then line it up and then they run like they are being chased out of the room-like literally run out of the room.  Which cracked me up because they are leaving me there half naked, breast half cut and they run. Radiation takes 2 minutes for me and I thought big deal that was easy! So I go back the next day with my BFF MC (I swear they all tried to get a free lunch out of me). Was in there for 2 minutes and left, this time sore and exhausted. Then my girlfriend Lisa took me, I was so tired and so sore starting to burn. Realizing this was not an easy ride, why didn't someone tell me?? Then Jess took me the next day I could barely move my arm, cording starting, burn in full effect, completely whipped out. And then I realized this is no freaking joke!

There it is and let me express that is nothing compared to what I have seen. NOTHING compared  to others but this is my story and in the words of Seporah "it is all about you". I have been using Lindz Cooling pads in the fridge they really help cool the burn.  My fab doc gave me some of that silvadene cream which is great.  A breastie sent me some amazing cream by Ava it smells delicious I wanna eat it and really seems to be calming my skin. As for the soreness and the ache, I will say it for the 100th time if you do not have a Comfort Pillow, get one! It not only is super awesome for those damn lymph nodes that come out it helps relieve some of the pain from cording and radiation so your arm does not rest on your side. 

 

I am off of treatment for a few weeks to heal and see what happens. Path came back clear so this is the right course for me. Next will be my abdominal  scar. Do you know how far that bastard goes?? Almost from butt cheek to butt cheek! No joke. I am worried about that- the healing and the radiation. We as a society treat rads as the "easy treatment". Who the hell decided that? We go every day and have radiation into us?? This is the definition of radiation per google -the emission of energy as electromagnetic waves or as moving subatomic particles, especially high-energy particles that cause ionization. Does that sound good? NO it does not. So why do we not treat patients like they are not in treatment? I have heard doctors say it is no more than a bad sunburn. UMMM really??? Here is a fact sunburns increase your change of skin cancer you douchebags. Stop treating us like we are stupid and that we do not understand what you are doing to our bodies this is not a joke to us and we need to stop taking it lightly. 

After radiation treatment you must, lotion up, hydrate, and rest. let your body heal after being burned and having electromagnetic waves flow through it. This is not a walk through the park people you go every day, bring a friend and have a milk shake after. However do not wear your tiara it could set the machine off and that would not be good for anyone. 

 

One Lump a plenty

I hate dates they are dumb reminders of shit that stress us out. Seriously think about-anniversary, birthdays, secretary day if you forget people get all offended you forgot. Then you have days that people die who the hell wants to remember that! Then when you get "the cancers" you get a whole boat load of dates. The day you found it, the day they told you, your surgery, treatment dates, when you are deemed cancer free OY too much. The only date that sits with me is the day I found that lumpy bastard. See I have lumpy breasts and this was "normal" to find a lump but this one was different and I knew it. my world changed that day.

Right before that dreaded lump discovery I had pulled myself up from 2 years of severe depression. I am talking BAD. I was just seeing the light shining and feeling good and this lump appeared with black nasty oozing out of it. Or did the depression bring that tumor on, hmmmmm oh that is another blog post let's stay on the topic. When you find that lump that is so different than all the others you can feel your world change, a shift in the atmosphere. At fist Tom thought and said "oh AM here you go" then he felt it and said "FUCK", his world shifted too.

That day became the what if's and the can in it be's. The is this happening to me and how did I get here. The it could be nothing and the I know it is cancer. The don't Google and the WebMD searches. The day I looked at women who had breast cancer with even more pride and with those who were bitching about their fucking manicures like assholes. The day I hugged my kids tight even though they were loud and driving me crazy. That day I knew I was going to be ok but I was so scared I was not going to be. How can one day change everything so quickly?

One lump is all it takes to scare you, to change everything and make you look at everything in a different way. Whether that lump turns out to be benign or filled with the cancer beast it smacks the shit out and will make you reflect. DCIS, inflammatory Triple negative, IDC, metastatic, lobular, male breast cancer all need to be addressed and acknowledge not pitted against each other like a boxing match. We all have our own challenges in life and no one can ever for a second understand how someone else's DX effect them. That one lump or non-lump changes how we look at the world it should not be how we look at cancer. 

Today is my lump day and I will spend it getting my yearly MRI, ugh. I hate scans not because I worry they will come back bad but the process is very hard on my body now. Everything from the injection to the scan to how I respond after.  Try getting a line in an arm with cording or one with lymphedema. Listening to the DING DIGN GRRRRRRRR BLGGGGGGTTTTTTTTTTTT while you suffer from tinnitus is pure joy! My body is not what it used to be that is for sure. Cancer attacked me and it started with that fucking lump!

Yearly MRI 2013

Yearly MRI 2013


My mastectomy tattoo phase 1

A tattoo should tell a story I  really believe that. You should wait until you have a major accomplishment or want to acknowledge something and you need to know exactly where you want it, too. otherwise you end up years later at the plastic surgeon  painfully removing it (example all those tramp stamps). I have a sun for my four sons, a bird for my mom reminding me a "life unlived is lost", several swallows for the amazing women in my life who have died, a crown for my dad as he is my king and I am his princess, a heart for TFO, an infinity sign with my family 13 of us, a ribbon of hope with my Meggie and Rosie for stregthen and a butterfly that reminds me that when a caterpillar thought their life was over it turned into something beautiful. So clearly I am know what I am doing and it made sense that I would get a chest piece over my stupid dumb foobs. When I marched into DJ's   Halo that January 2013 and he told me I was not ready I almost cried, ok I did. But he was right since everything failed shortly after that. I waited until I was healed and we decided to stay away from the scars and it was a go NOW!!! But why do woman choose this? I can only speak for me and will do my best to do just that.

First let me start by saying there are few people my husband would want to touch my breasts at all let alone for this long. My doctors being the only and DJ being the second to only. He came with me but he and Genevieve's husband left to hit some SU bars and have talks about breast cancer and beer, seems normal on a Monday night for a school teacher and college professor. If you know DJ then you  he is the kindest-amazingest-spiritual man on the earth so I was at ease. So at ease that the left side where all my cording is and I thought was going to be the hardest, I nearly fell asleep! The right on the other hand where all my nerve damage is and lymphedema is WOWOOWWOWOWO it hurt but weird hurt. I felt nothing then BAM instant pain yet I could not tell where he was. I think DJ found this amusing but would never admit it. Now I will not lie my breast was red, swollen and pained for a few days after for sure lymph reacted. But I added an ice pack and it went down and I am fine now. SHHHHHH do not tell my doctor.

Breast cancer strips us both physically and mentally taking at times our dignity. It comes in like a devil when we are not looking and rips into our femininity like a thief. Leaving us blank. Whether you have had recon or not you look down and see what it has left behind. It is a reminder of both how far you have come, what lies ahead and the pain that you are feeling at that moment. The scars remind us of the fact that we are here, they are the tough skin that has surfaced over trying to heal. Yes the scars should be our mark that we are strong and that is true. But is that enough for us women? No fucking way! I look down and was confused, lost in emotion filled with so much it confused me. I was happy to have the cancer gone, mad to be a mess, confused because they do not look like breasts and yet hollow because I felt nothing. Felt nothing physically which was messing with me mentally.  I wanted to regain this back in some frame.

I wanted something to remind me of beauty and growth. Since healing is just that right? Walking one day I said to TFO that I wanted a flower and would he draw it -of course. He went right to magnolia since my love of the Grateful Dead Sugar Magnolia is strong. When I looked up the meaning it meant dignity, PERFECT. See between having a doctor touch, remove, cut, examine and constantly feel  our bodies we loose something-like we have no modesty any more, I did feel cancer took my dignity.  It took my body which was not perfect but it was mine and made me have to place many scars all over it, lay naked asleep on a table as surgeons and nurses removed the cancer and placed me somewhat back together. It messes with my mind making me lose my confidence and it confused who I was for a brief moment. Which I wanted back.

I had a blank emotion when I looked at my chest, something was missing and I needed to fill that space with life. Adding to the not feeling my chest I wanted to mentally feel something. Flowers for sure mean life they bloom when planted. I want to be able to take my shirt off n front of my husband and he see the beauty not the scars- I wanted to bloom again. OK OK OK I know if he even still reads this god forsaken blog he would say he never saw them. But I felt him seeing them. I want to look at myself and see flowers of plenty because in a wacky way that will make the voices tell me that is what he sees. Damn those voices, if only they would shut the hell up. They see those scars and tell me too much shit I need to take them over and rewrite the story.

My tattoo tells the story of how I have grown through this stupid dumb fucking breast cancer process. How I have learned you have to find ways to heal your mind as well as your body. That cancer takes its toll and we must finds ways to reclaim who we are and create a new us. I have accomplished so much in these past almost 3 years and have so much more ahead of me. I definitely want to acknowledge this this is what cancer can not do this is me. Cancer brought on a straight up shit show, but I am prepared to clean myself off each time! The after math of cancer is so much more than I ever anticipated, finding ways to heal is the only way to live. That and a shiny tiara!

DISCLAIMER

 

I am wiling to show the new ink even at family events when quiet male cousins walk in.... AWKWARD 

Divas at your service-Happy One Year Anniversary to me

It has been one year since I joined the CureDiva team or better yet family. When I was first asked by Efrat to blog she wanted me to dig deep for my first post about body image. Efrat wanted the Diva Community to see just what my blogs were about. Efrat wanted the lounge section be a place where woman could find the help, tips and resources they could feel trusted, just like girlfriends relying on each other. I have felt like in this past year I have helped build this community just like my girlfriend wanted. Here is the thing, there is so much to CureDiva people have no idea about. I have seen posts and and questions about the site being just a shop and  selling "stuff". While yes it is a shopping mall it is so much more and in the past year I have learned just that. I have decided to share some stories just so everyone can see what CD is about. 

Cure Diva offers two services that no site seems to have. One is the Guardian Divas.  An area that I run and am honored to be a part of. Woman who are looking for support can now reach out to these guardians who have been there. Seems like a win win because for the guardians it ends up being the therapy they need to heal. You know it is never over and this helps us push through. The other is "Divas at your Service".  In the bottom right corner a screen pops up asking for help, seems simple enough. Except what is on the other end is not a computer or mass of people randomly answering questions they know nothing about. It is myself, Lisa or Carole woman who get it, who understand and want to help you through your cancer process. May not seem huge but when you are DX with breast cancer which is so private this intimate chat is so such a relief. I want to explain just how.

The Alone

I was on the service and chatting nicely with a woman who was very alone. She lived in a very secluded wooded area and none of her friend ever had breast cancer. Her support was great but no one really understood. After her mastectomy she had chemo, rads, a horrible infection, implants removed and scars so bad she can not use any prosthesis, NONE. She hated this, she missed her breasts, any breasts, she just wanted to be a girl again. She hated, loathed how she looked without a bra, is there anything she could do. I gave her my number and she called me. I showed her various bras and we decided on the Ana Ono kelly Lace . The fact that this bra was made by a breast cancer momma made her so happy! Great she said and we hung up. About a week later I got a call apologizing for bother me. "Alone" wanted to tell me that the bra was just what she needed. It made her feel like a woman, she felt pretty again like herself. She was always pretty I am sure but the bra gave her that boost! She thanked me about 100xs for giving her a piece of herself back and then I heard it-the tears and crying. We sat there in silence both crying for what felt like a minute but was probably 10 seconds. That moment it was about sisterhood, that is CureDiva.

The Grandma

I got an email from Carole asking me to help this sweet old woman, no problem. She was 87 and a 21 year breast cancer survivor!!! Hated that young kids were getting breast cancer said it was for old ladies and a stupid disease. I loved her right away. She didn't leave the house much but had a single mastectomy, used a walker and needed a new prosthesis her old one was "shot to hell in a hand basket". After an hour and 45 minute chat were I tried to figure out which one she had and find a bra we placed an order. I called her back when I knew she got it. She was so happy that I not only called her but remembered and even happier that it works like a dream. Now she will look all together at church, "you made this old lady happy". that is CureDiva.

The Uni  

Our PR told us about a TV show doing a make over for a breast cancer patient and could we send some products. Great, that sounds just perfect. After getting some info I asked if I could please talk to the star because we needed to know some info that would help with the bra and the prosthesis. After some persuading they said yes. So I rang the woman, "Is this AnnMarie of SDBC" was her response. Not only did I know her but I LOVE LOVE LOVE her. She is a young BC girl who needed this make over and a prosthesis.   See she had been knitting herself one, yes you read that right. After we both burst into chills and tears I go her measurements. For her it wasn't about getting just a bra it was about getting back into her life. She needed to start getting out of the T shirt and jeans and start having a little style like she did before all this shit!  I loved picking out her bras ( I found ones with pretty colors that would look great on her) and inserts, knowing who was getting them made me so happy. That is CureDiva

 

The Brobe

I was helping this lovely woman with her mastectomy prep. Her doctor never gave her the info about using a recliner to sleep in so I told her about the BedLounger. She was so excited to have these tips. We chatted about treatment what she was feeling and what was next. She wanted all the options possible for dealing with drains and really wished we had the Brobe which was on back order. I do this 'Sisterhood of the Traveling Brobe" and sent her mine. She was blown away by this plus I sent her a Bravery Bag. We have been texting ever since. She sent the Brobe back and I have since sent it on to the next but that is what CureDiva is about making that connection.

CureDiva is not just a shopping page it is a community set up to give the best possible platform for connecting to others. I have made so many incredible connections through this page. I did not even blog about the vendors!!! Nor have I discussed my Tali, my sun who I love with my heart even a sea can not break our sisterhood. I work with a small company that I am in contact with daily. They listen to the voice I have for the breast cancer community and respect those crazy comments I have. Aya, Dana, Maor, Zohar, Carole, Lisa, Mor, Ayete  all work together with the same mission to make CureDiva a community not just a page. Now if only I can talk them into a tiara section it is the only page we are missing! 

Happy one Year Anniversary to me!