Upstate/Downstate

Rocking my shirt XO Downstate AM

WEGO Health Day 25….We don’t stop learning when we leave the classroom. Share something you learned from another Health Activist (Share their name/blog/website!).

I met downstate Anne Marie when I was searching for blogs to help me with my diagnosis. I hit on Chemobrain . When I found her I was so excited, her name was Anne Mare (ok I will give her the “e”). I never really loved my name I wanted to be Tracy, Tammy, Shelley-yes I wanted a “Y”!! So I have this thing with Anne Maries:), they make me happy. Plus, she was a New Yorker.
We chatted away and had a lot in common. We talked not just about our stupid dumb breast cancer but our heritage too. Grandmothers, mothers, and friends! It was a great connection, Then she said “I want to talk to you about Komen”. My gut sank, ugh she is a Komen hater and I am a Komen lover, looks like this friendship is over. I watched her tweet about the reason, blog about it and every time I cringed a little. Here is the thing we talked it out yes but she did not hold our differences against our friendship. Instead she said what she wanted and I said my peace. That was it. The thing is she taught me to check the grassroots groups. I hesitated at first but then found Cancer Connects.

Had Anne Marie not taught me about these smaller groups I never would have looked into Cancer Connects. I am so happy she did. I am proud to their fund raising princess. They are here for cancer patients when insurance isn't. They provide not only mentoring but therapy that eases the journey just a little. I can not want to for the Kick it to Cancer event that is the start of this beautiful relationship!

So thank you Downstate AM, had you not given me your thoughts I would never have found such a wonderful group to work with! Thanks for teaching me to think bigger yet look to the smaller groups.

Words and blogs and mastectomy OOHHH MYYY



http://pinterest.com/amero/

WEGO Day 24…….Wordless Wednesday, Create a Pinterest board for your health focus.  Pin 3 things. Share the image.

Here are the papers you need to fill out, UGH

“I wish this gizmo could track my condition!” Write about which device, application, program, etc. you wish helped to track your health. Day 23 WEGO HEALTH


No matter which doctor you go to you have about 10 pages of paperwork. Questions that you have answered a million times, one that are ridiculous they are almost hard to answer. Are you pregnant? Seriously, I not only have nothing to catch the swimmers in but nothing to hold them in. Do you breast feed? UMMMM only if the baby likes silicone. Have you had a mammo gram? Yeah we covered that a few times. The best are list your surgeries with dates. Not only can I never remember the dates but there is never enough space for all of them Wouldn’t it be great if we had a barcode? The office could just scan it and have all your info right there. You could go online type in the numbers to you code and see your results, NO WAITING!!! You could enter any questions and they would be answered. Plus, you wouldn’t forget important info, like you have expanders in and can not get a MRI!!! All your meds would be listed and when you need a refill. If you have an upcoming doctor appointment BAM it is there. Shit you could even list what you ate so the doctors would know. This would save on their paperwork too, no more hauling those folders. This is a green solution for sure. Yes, I know some may not want to get branded but really once you have had your breasts removed, uterus/cervix/tubes/ovaries all ripped out you lose this sense of modesty and you just want to not fill out another piece of paper. Not to mention I had 4 kids, you have no idea how big my file is at my doctors. They literally need a forklift to carry it. I see a future for tattoo artist here no doubt!

I got needs you know

Write about the things you couldn’t live without – list 10 things you need or love most. WEGO Day 22

I just love a good list one you can cross things off and feel like WOW I got shit done. I have this talk with my kids all the time needs versus wants. I guess this list will have to be based on needs, damn it all to hell a want list is much more fun. No doubt through stupid dumb breast cancer this list has altered but I have always been a breast health advocate, the irony is that I got breast cancer. I really thought I had a deal with the breast goddess, I guess the deal was my advocacy was going to be pumped up.  You know I am going to start this with a song. These are a few of my favorite things (now that’s a nice jingle for the morning!)

  1. The obvious a CURE, I feel so typical for writing that but it is the truth. How is it that we can find a way for a man to sustain an erection, but can’t cure a disease that is killing people even children. There has to be more advances.

 2. My kids to see a world where there isn’t hatred. I want them to be empowered by love so they can thrive! I hate having to explain evil to them

3. The image of the pink ribbon is great and all but let's get pass it. It isn’t what cancer is. It isn’t all pretty and tied up nicely It is painful and scared. I want people to see what is behind that ribbon, the real faces of cancer.

 4. A pair of Christian Louboutin’s. That has NOT changed through this whole process. And yes it is frivolous and will not solve a damn thing but it makes me happy.

 5. Woman need to really do self breast checks!!! Stop telling your doctor that you did it and actually feel them breasts. The best way to stop breast cancer is early prevention, the key to early prevention is staying breast healthy. I am living proof of this.

  6. I need my dad to be happy. I feel like he is finally after losing my mom 40 years ago, doing just that. I am so thankful for Deb, cause shit I was going to have to take care of his old butt and I have 4 kids!!

 7. People need to stop judging someone else’s journey to their own. We all struggle in different ways but we all want the same result, to LIVE life. I mean can’t we just help one another instead of making it a completion???

 8. I have a need to help those battling cancer now. Yes research is vital but what can we do about those sitting in chemo, going into surgery?? That is why Jill and I created Bravery Bags, we want to show those battling that there are actual survivors supporting them.

9. I need an oompa lumpa. I mean come on there were suffering on their island and need love. I would love for them to clean my house, do the laundry, go run errands and I would love them for that! (Sorry coffee is just sinking in and I don’t want to be serious right now)

 10. Wouldn’t it be great if we could find the route of cancer and stop it before it started?? I know we have the genetic testing but what about those who have tested negative (MEEEEEEE that is me!!). I need answers to why I got breast cancer. Stress?? Environment?? Hormone’s??? There is an answer out there, we just need to find it. Maybe just maybe the answer is on one of my kids, would that be an irony of the fabulous kind??

I would like to point out that not once I said I need to be a princess, not once!! Maybe because I already am.

Every rose has its thorn

Pinktacular rose

WEGO Day 21…..“The flower that blooms in adversity is the rarest and most beautiful of all.” – Mulan
True or false? When do you bloom best?

I hope you enjoy sitting there singing that hair band song. I have gotten so much crap for putting myself out here the way I did. I lost friends who can not understand why I would expose myself like this. People have told me that I cant talk about cancer because I didn’t have the “real cancer”, damn then why the hell did I get a mastectomy??? Through this I have made enemies with people I do not even know because they think the pink ribbon is breast cancer awareness, not my scared chest. They are the thorns in my rose!

I have made women who would never get a mammo not only get one but follow up. That is almost as important as going, anyone can get one but how many come back. The images I have shown have helped so many see what it was going to be like. Isn't that so important to take the scary out of what is beyond scary enough? I am getting men and women alike to do self breast exams, men already love coping a feel but now they are doing it for health reasons. Stupid Dumb Breast Cancer has raised $25,500.00 to date for breast cancer, there is the real pink ribbon. Making Caring Kids is what our community needs, letting the kids be apart of real volunteer service. This is getting them to be proactive in making a difference. Joining with Cancer Connects and Jill to help people battling the beast brings this whole journey into what I was meant to do. This is my rose, this is how I bloom.

Honestly these metaphors are killing me! I am such not the English major. Although there are princesses in England…..

Burn baby burn

Day 20 WEGO Health....It’s the worst. That feeling when nothing seems to be going right for you and you’re not sure when things will turn around. The dreaded, burnout.

What does it feel like? What are your burnout triggers?
Burn baby burn

 I thought about this and while I feel like things burn me I don't let them burn me out. I make them burn me up, they increase my mission to raise awareness, promote early detection, honor my warriors who have lost their battle and really help those battling. The burn is to light my fire!!!

Every time I turn another warrior takes wings. The beauty of this is that I have made some amazing friends, the sad is that with that comes losing them. Every time one takes flight it burns my heart and makes my fight more intense!

I feel like every time I go to the friggin doctors something else comes up. I feel like I cross one bridge and another is right there. I got to tell you that I really hate bridges, HATE them. But you know what they say you have to burn some brides to light the way. So with every bridge I cross I feel like it's lighting my way to the healing.

The key to all this is to not let that burnout take you out. Have it ignite the fire inside you to light way to healing! Together we can light the world on fire. 

Wow you got to admit this was an enlightening post, blahahahahahahahaha. Oh my pun kills me. 

Cure or bust, busting a move

Here it is the official Cure or Bust shirt. Available  not just for our amazing team but for anyone who this they are as fabulous as they are. Contact savetheboobiescny@gmail.com for your ordering needs.  Thanks so much to them for trademarking the name, what a way to celebrate my first year as a survivor. Many thanks like huge thanks to Joni and Courtney for the wonderful design. Big props to Kim Vohs for coming up with that name!
 Let me give you the story, don’t worry it will be short. When I first started the team we used to pick a name, the winner got a prize. Then 5 years ago Kim Vohs came up with CURE OR BUST, that year we were 348 strong and raised over $67,000.00, needless to say we decided to keep the name. Since then we have been the biggest team and 2 times raised the most money, I think the name brought us luck! Last year I was approached by Save the Boobies CNY www.savetheboobiescny.com to trademark CURE OR BUST on tshirts for everyone to wear, I said hell yes (literally I said that). SOOOOOO here they are! Our team members will get a discount code for the shirts at $7 then everyone else will be $15. If you ordered a sneaker shirt but really prefer this please contact me, otherwise I will let you know when you can order them Thanks to Joni and Courtney for the fabu logo design!!
http://centralnewyork.info-komen.org/site/TR/RacefortheCure/SYR_CentralNewYorkAffiliate?team_id=234025&pg=team&fr_id=2850
Register for this inspiring team today! It doesn't matter if you are in California, Detroit, Florida, or Texas, we can be a team wherever you are. The day of the race for for a walk, help someone with chemo treatment, make a card for a rads patient, send a meal to someone getting back from surgery. There are so many ways to be a part of this day without being there. Joining the team means so much to me., so much. You may not be there to watch me cry my little eyes out but the chances of there being a picture or two are pretty good.

Stupid Dumb Breast Cancer with a dash of MS

Keep smiling, keep shining. Knowing you can always count on me, for sure'. Cause I tell you, that's what friends are for. Whoa, good times and the bad times. I'll be on your side forever more. That's what friends are for

 WEGO Health Day 19……Post a vintage photo of yourself, with a caption about the photo and where you were in terms of your health condition.


1986, top of the world and so full of health, or so we thought. Too bad we were drinking, smoking and sneaking out like to good Catholic school girls to realize what we were doing to our bodies. We didn’t think about health issues, but we were in our minds healthy. Then again when you are 14 who cares what you are like at 40! We were eating crap, I mean Pat’s pizza was so yum back then. Exercise?? LOL if you call crossing Teal Ave to sneak to the mall to met boys a work out then sure. Don’t even get me started on alcohol consumption, crème de Mint was our choice (sorry dad!). Sneaking cigarettes at Marble Farms, YUK what were we thinking. Ok, I will give ya the pot smoking, that was the only healthy thing we did! Our health was not a concern only boys, cheerleading and boom boxes, but we were healthy right? I wonder if our story starts here, did it all begin when we were 14?

Now were dumb back then but then as we got older we smartened up. Started exercising like mad, have you seen Tracy’s guns!? Eating healthy, even went vegetarian (she is a meat eater now but ALL natural). We even found a way to keep our mind healthy, therapy yes but just thinking a little kinder does wonders. So is the joke on us that 4 years ago she is diagnosed with MS, then me with breast cancer?? I mean come on. WE ARE THE HEALTHY ONES!! I must say that since we were both DX we have made an even more conscience effort to be even more healthy. I wonder if our 14 year old selves would have eaten and exercised like our 40 year old selves? I am just happy that after 35 years of friendship some bumpy roads and a lot of health issues we can still be here for each other, after all that’s what friends are for?

*** disclaimer if Mrs. Taylor is reading this it was all my idea to cross Teall Ave, Tracy was wanting to cross Court St!

2012 healthy as 2 MS, cancer fighting beauties!

“What’s wrong?”

letting it out

letting it out

• WEGO Health Day 18….. Write about a time that you lashed out at someone close to you because of frustration/fear/anger resulting from your health condition and you wish you could take it back. Forgive yourself and let it go.
• On the flip side, write about a time that someone said something to you that they wished they could take back. Did you forgive them? Why or why not?

“What is wrong?” asks Tom. Really I thought that is what you are saying?? The day I went in to get my drains removed I was told only 2 were coming out. I was so pissed. Tom asked that to me and I lost it. EVERYTHING was wrong, how could you ask such a stupid question. I have talked about the no crying rule, I made it because if anyone was going to cry it was me and up until this day  I really had not. I had made joke through everything, it was my way of coping. Plus, it was my cancer's not theirs! IT"S MY CANCER AND I WILL CRY IF I WANT TO (hahahah got you singing again). But we were supposed to leave for the Cape in 4 days and I was done coping. I could go to the Cape with them (a friend’s mom is a nurse there and offered to help) but sitting on the beach with deflated breast, drains and no energy was not what I had in mind. I lost it, you know that uncontrollable crying that makes you hyperventilate, snot out of your nose, puffy eyes, tears  that was me. Must say I was not looking that fabulous that day.  I don’t cry like this so for my kids, husband, my girlfriend’s daughters and my girlfriend they didn’t know what to do.

only 2 come out, WTF

I know now Tom was just asking what exactly was I so upset about, but his comment at the time seemed so fucking stupid. I have mother fucking breast cancer is what I wanted to say but there was kids there and I do not swear in front of them (no really I fucking don't I swear). I wanted to scream I have tubes coming out of the sides of my body and I want them out! I have nasty fluid being drained from me and I hate them pure hate. I haven't cooked for my family in weeks and I want to take care of them. I need to feel like a woman and I can not with these god damn drains in. I WANT TO WASH MY HAIR MYSELF.

This was the worst day of the entire journey. It was so sad to me. It was the only time that I felt sorry for myself. I remember Genevieve saying “I am so glad you are letting it out” and that is what I needed to hear that it was ok to scream. Nikki sat there and just looked at me trying to find the silver lining but knew at that moment there was none, I needed that. Tom kept the kids busy yet looked over at me every now and then knowing I needed space, I needed that. MC tried to talk me down but knew all I needed to hear was “FUCK”. The kids were all great just trying to keep it light and wanting me to smile, I needed them.

But the real help came from Nikki’s mom. She looked at me and said “You are not ok, are you?” and hugged me. I NEEDED THAT! I didn’t have my mom there to hug me and tell me it was ok to have a day like this, but I had one that moment. I felt like she was “mom”. She is not a hugger but she hugged me told me something I do not remember then walked away. All I needed was that hug from her the words didn't matter.

I know this was about what people did and did you forgive them but the truth is even though Tom’s comment pissed me off so effin bad that day it also released me. I needed to finally be pissed, To cry like a little girl. To have my friend take care of me. I needed to have a mommy.

WORD UP

WEGO Health Day 17…..Take some time today to go to "http://www.wordle.net/">Wordle  and create a word cloud or tree from a list of words associated with your condition, blog, or interests. Think of it as a collage for your thoughts.  Inspire others with your words in a different way. Bask in the cool waters of the stream of consciousness and express your thoughts about your condition!


I decided to use my blog for words and I love the ones it came up with. I love this site and can not wait to make more. Damn I think I have a new addiction, at least it isn't crack, crack is whack!<