Late Stage Breast Cancer Panel

I went to a late stage (stage 3 or 4) breast cancer panel tonight. Didn’t know this before but apparently Mecklenburg county has a higher rate (9%) of late stage diagnoses than surrounding areas and they are trying to find out why by linking stories. They are not finished but from what I observed tonight, my take is the following:

1- It doesn’t have anything to do with race, education level, or income, which has been shown in other studies to be true. I’m sure that plays a part for some but not this group.
2- Three of us were in our 30s. I knew all of the 30 year olds. One was my friend Anne Marie who I knew before cancer (we were diagnosed a year apart). Another was a mom from Aidan and SaraGrace’s school. A couple other women were in their 40s and the rest older.
3- Almost ALL of us had similar stories about going misdiagnosed for a while. Presenting the first lump and months sometimes years later getting that mammogram that was first dismissed because of another perceived more likely cause. For me that was the “implant ripple” and “pregnancy cyst”. Maybe instead of blabbing to the public about pink ribbons and self exams, we should educate the doctors and insurance companies about how to listen and not dismiss lumps when you can’t see them and always get at least an ultrasound. No risk in that.
4- This is the most encouraging but I actually met many stage 4 women women who are still holding on strong and some in remission 10-15 years out. Holding onto this for my stage 4 friends! Please pray for them. Tracey, Janet and Gift. Tracey is the girl who I met through my blog and we both had the same kind of breast cancer and both went on to adopt. Janet, who is the wife of a friend from college. She also has a young son. And my Thailand pen pal who I met through my blog when we were first diagnosed. Very sad and scary that a lot of my breast cancer friends are battling stage 4 disease and recurrences now. And while you’re praying please add my new friend Colleen to your list. She was diagnosed last week and is waiting on body scans.

That’s about it for the study. They will keep us in the loop as it progresses. I have my five year mark coming up on March 24, turn 36 on March 25 and have my next oncology follow up and MRI in a couple weeks. First time I’m not flipping out with anxiety. Well maybe just a tad. But way less than the years past.

2013 A Year of Ups and Downs

So I don’t blog much anymore. Those of you who are friends of mine on Facebook know my life pretty well because I post status updates and pics all the time but thought I’d take a moment to recap 2013. Since this started as a breast cancer blog and has remained mostly about that subject, I will start with that.

My friend Sara who I met in the waiting room of Dr Limentani’s office was emitted to the hospital just soon after or perhaps shortly before the new year of 2013 began. Five days later on January 5th, my friend Amy passed away. Four months later after almost that entire time in the hospital, Sara passed away.

Amy and Sara were both unique and special souls. Both great friends with positive attitudes and great outlooks on life. I met their families and thank goodness for Facebook that I can stay connected with them through technology that everyone so quickly degrades.

Dan and I had been thinking and debating for over a year about whether or not we wanted another baby. Aidan was 3 and was in “terrible three” turmoil. Saying NO and screaming at us. Hitting us. Etc. We struggled with ways to discipline and nothing seemed to work. Until he turned four and then miraculously he is now a saint. Most of the time. He usually just misbehaves now at dinner. He is the pickiest eater. Another struggle point for us. He likes to call people his best friend. Niko is my best friend. Ibraheim is my best friend. Luke is my best friend. Jacob is my best friend and so on. His new thing is telling me I’m NOT his best friend and that I am bad when I tell him he can’t watch Ninja Turtles for the tenth time in a row or he can’t have pretzels and Popsicles for dinner.

Ok I just got way side tracked. So back to Dan and I debating about a second child. The day Amy passed away, it just clicked. I had decided. How long are we going to sit here and question it? Let’s just do it already. And after Christmas and the low key nature of Aidan opening his presents all by himself on Christmas morning, I had made up my mind. Dan was on board immediately and like I do with everything I jumped into Home Study mode. We got approved and began submitting profiles. The first four or five birthmoms chose other families. I was a stress case. We decided we needed a vacation. We had not done anything with just us two since Aidan was born. We booked a flight on a Tuesday for that Thursday sometime in mid March. The next day I realized my passport expired. So we changed our flight to St Thomas and St John. We got a call the day before we left about a birthmom due in a month with a girl!! That’s what we really wanted. We went on our trip after hurrying off our profile and had a blast. Met anther couple who was also adopting. They had been waiting a year. We clicked with them immediately and remain in touch often. The day after we got back, we found out we were the chosen family! A week or so later, our St John friends got an overnight call of a baby girl born in NY! Such an amazing time. Rushed down to Florida in early April, met SaraGrace’s birth family, including her birth parents, sister, paternal grandparents and maternal grandmother. Such an awesome experience just like Aidan’s four years ago. Got to be in the delivery room. Dan got to cut the cord and I had my own hospital room for a couple nights. Then a week and a half in a Disney themed condo and we were headed home!! Now we’re one big hectic happy family! :) I stay in touch with SaraGrace’s family through Facebook just like Aidan’s.

March and October mammograms and MRI scans came back clean. Lost a third friend to breast cancer late summer and have met WAY TOO MANY other young girls diagnosed this year. Have my next MRI in about three months.

Still taking my Tamoxifen pills daily which I hate. Have hot flashes every so often but other than that the cancer is almost five years in the past.

2013 – full of ups and downs. Most of the downs were the passing of friends. Most of the ups were the starting new friendships. But most of all it was SaraGrace joining our family!!

Happy New Year everyone! May 2014 be filled with more ups than downs!!

Just a Random Vent

So I feel like I hold back many of my opinionated thoughts on Facebook because I know for a fact that many would disagree and I don’t (usually) like to stir up controversy when it’s obvious everyone has different opinions. For example, I usually don’t broadcast my opinions about politics, religion, abortion, etc. because I know we all have the right to our own opinions and I don’t want to upset people that I care about. And even so, my opinions on certain topics have changed over the years and are not one size fits all and apply to all situations. However, last night, I posted an opinionated comment in a private mommy Facebook group after being a little fed up with something. It was in regards to breast feeding and this evolutionary parenting philosophy. Well, let me tell you, did those people let me have it!!

There was a prior post that a girl posted asking how she should transition her 10 month old from breast feeding to formula without feeling guilty. All people did was rant and rave on her post about how she shouldn’t stop and gave her all these things/ideas/ways to do to keep going – on and on they went. I simply commented, “Do what you want and don’t feel guilty. My kids are formula fed and they are just fine.” They were well intended comments from the others, but I just felt like they were all so biased and not answering the question she was asking.

Welllllll, that got me all fired up so I created a new post to simply vent that I was offended by the majority of people within this group ridiculing people for not breast feeding or deciding when they think an appropriate time is for others to stop. I then decided to throw in a sentence about an ex-coworker of mine whose wife breast fed their 6-7 year old (yes, years) and that they all slept in the same bed as a family (4 children) – this is known as “co-sleeping” or a “family bed”. First, I am not educated in this area, nor do I care to be. I am purposefully posting this on my blog and not facebook because I don’t care to hear anyone’s ridicule or educational tone about me not knowing what I’m talking about (especially after the earful I heard last night). But, anyway, hello?!?!?!……. does this not remind you of “Willy Wanka and the Chocolate Factory” when the whole family, grandparents and all, got all cozied up together in their nightgowns and nightcaps all sleeping in the same room? I remember that scene vividly and thought it was weird but knew it was because they were poor and only had one room. I was intending to be witty about it but oh the number of people that blasted me and took my statement way out of its intended context!

Putting the “co-sleeping” and “family bed” aside for a minute (because I find it perfectly fine for your child to sleep with you if they are scared, sick, crying, young, etc.) – I was only referring to the Willy Wanka style idea that seems to have gotten some momentum among these attachment parenting enthusiasts that have their whole families sleeping in the same bed well past their youth. One girl commented that her 15 year old son still slept with them and that he was very popular in school. Um, I’m not sure I get your point lady, but to each their own – hello weirdo though in my opinion.

Another girl said it was selfish of me and others to choose not to breastfeed and that we should find any possible means to breast feed because “it is a FACT that breastfeeding is better” – she kept saying FACT over and over again and then added that you should find a way to breast feed even if you are not able (e.g., if you adopted, which I had mentioned in my post). I obviously understand the facts about breast feeding and its benefits (who doesn’t). All I was saying was that those people that are so glued to it, should give people a break if others can’t (like me) or choose not to for whatever reason they decide (e.g., they tried and felt exhausted, they were too tired, the baby wouldn’t latch, they were in pain, they worked full time and didn’t like pumping, whatever). But everyone completely flipped their lid on me – I seriously felt like I got jumped on facebook. Every 30 seconds a new notification would pop up from another woman blasting me.

One suggested that since we adopted, I should hire someone to pump and give me their breast milk. She then said her friend does this and actually has 7, yes 7, different mothers that pump and provide breast milk to their adopted children. Not only is that gross, weird, and probably never something the FDA would approve, it just shows how people have SUCH differing opinions on the subject – that would have NEVER even crossed my mind – call me selfish I guess – I think it means I’m logical, and not a complete weirdo. Who wants 7 random women’s bodily fluids in their fridge and fed to their baby? Ok, I am trying to be a little humorous here, so don’t jump all over me and suggest that I think breast milk is a nasty bodily fluid, but come on people, who does this?!

I was obviously outnumbered on the feed. It got so heated so fast that the Admin of the group was called in to delete the string. However for the record, I must add that she messaged me privately and said she agreed with me and that it was my choice to have it taken down. I told her to delete it because by that point I was in tears. These women were just cruel.

I have since left this mommy group and will never join such a group again. I obviously don’t fit in and am too outspoken for my own good sometimes. I wanted to vent this though on my blog though, because it really upset me last night and still has me fired up. I will also add that there were TONS of people on my side that privately messaged me about them agreeing with me and not to be worried about all the blasphemous comments people were posting against me. They knew the audience of this group better than I did and opted not to say anything directly on the post in fear of retaliation/ridicule. For those of you who are my friends reading this and offended, I am sorry. If you are into this “family bed” thing, I am NOT saying I think it’s inappropriate to sleep with your children. I was just making a joke about the Willy Wanka bed and making a statement that at some point, there has to be some separation or drawing of the line somewhere. Same things goes for breast feeding. In my humble, uneducated opinion, I think 6 is pushing it. Correction – 6 YEARS! Not 6 months. Seriously people. Really? This should be a law.

ACS June Survivor Spotlight

The American Cancer Society has honored me by sharing my story in their June survivor spotlight!! Our local breast cancer orgs – ACS, Komen, Carolina Breast Friends – they have all been a HUGE SUPPORT for me!! They make me feel special too in their interest in my story over the past four years. My five minutes of fame replaying itself. I just wish I would have some way of knowing if my story has ever reached anyone that made a difference. I had someone recognize me last year at one of the walks from the news the night before. That was pretty cool. Aidan and I got called up on stage that year. Aidan took the mic without hesitation and asked Natalie Pasquarella “what are all these people doin’ here?!” Ha. I think I’m subconsciously working on being famous ha. Maybe then I could meet more celebrities instead of stalking them out. Anyone out there with Richard Gere connections? ;)

http://main.acsevents.org/site/TR/MakingStridesAgainstBreastCancer/MSABCCY13SA?pg=informational&fr_id=55891&type=fr_informational&sid=188857

108th Post

I rarely update my blog anymore but thought I would just ramble for a few minutes.  Afterall, I’m on maternity leave and I actually have a minute.  This will be my 108th post since I started my blog in 2009.  I have some new followers from Asia, which is always so cool to see how far a random person’s blog can really reach.  It is so nice to know that my blog not only kept my friends up to date and allowed me to vent, but is also helping others (even though maybe just a few, who knows) around the world.  So here are my random thoughts for today (only one breast cancer related):

1.  First, tonight is my friend Sara’s memorial service.  She was one of the two stage 4 girls in our Young Survivor Group at Carolina Breast Friends.  She passed away the week before we went to Florida and three months after our friend Amy.  I met Sara in the waiting room at my oncologist’s office back in 2009 and we became friends on facebook and through text after that.  We grew closer in the last two years as we formed the Young Survivors Group and I invited her to our first meeting.  She was a teacher at West Meck highschool and such a cool chick.  She quit work to focus on her health after learning her cancer had metastasized to her lungs, liver and brain.  She went to Puerto Rico to learn about raw dieting and juicing and was always on top of her health.  Her mom passed away a little over a year ago from a sudden stroke and the breast cancer genetic mutation ran in her family (just like Amy).  Her dad is just precious and is left behind with so much sadness but tons of special memories of both of them.  I know Sara and her mom have reunited in Heaven.  Tonight will be a hard night though.  I haven’t had much time to grieve losing her friendship with all our adoption stuff going on.

2.  Today is also my husband’s dad’s birthday.  He died a little over a year ago too (time is a blur for me).  Happy birthday Garland Murray and thank you for teaching my husband how to be a standup man, best husband ever, and the greatest father I know.  Dan learned how to be patient, kind, confident, and all the man he is from his dad.  Dan’s family was very well known in Greensboro when he was growing up.  Everyone I meet from Greensboro knows their family.  Dan’s dad was very involved with the Red Cross and they are the most special family.  I am the luckiest girl to be a part of their family.  There is more to the story but just know, they are truly resilient, faithful, forgiving and the most precious people on earth.

3.  My last post was about my 4 year survivor day.  A lot of times on facebook, I would post things like “on this day in 2009, I was getting my first chemo” or “on this day in 2009, blah blah blah”.  Now I only do that on March 24.  I am looking forward to the future now and not dwelling on the past anymore.  Well I’m trying at least.  There is so much brightness ahead.  We adopted our second child in early April.  The adoption process usually takes a year from the time you sign up with an agency or consultant.  We adopted Aidan in 3 weeks and SaraGrace in 1 month.  I told our consultant she was the best ever.  She said it’s because we were also open to pretty much anything.  We just wanted a child.  I also think my past experiences led me to where I am and where we were supposed to be.  God didn’t want us waiting anymore.  We had already waited long enough.  Adoption has been the most surprising blessing of my life.  Not many people grow up thinking they want to adopt.  But man, it’s an awesome experience and I wouldn’t want it any other way.  Our two kids are amazingly perfect and they are turning out just like us (after reading that again – I am not saying that Dan and I are “amazingly perfect” – ha – but you know what I mean hopefully).  Aidan is a little neat freak and little fisty just like me.  And SaraGrace and Aidan (as a baby) are calm and peaceful just like Dan.  We have great and balanced relationships with their birthparents and things went perfectly for both.  We are so grateful.

4.  Facebook…..what can I say, everyone knows I love facebook.  Sometimes I post 10 things in a row just because I think of something else to say.  But I really do – I just love facebook.  It allowed me to become friends with people in other states and countries (through my blog first) that I wouldn’t have gotten to know otherwise.  It helps our young survivor group stay connected.  It is a daily reminder of all the struggles out there and all the happiness out there.  Right now, I have friends on facebook who have recently lost children or loved ones, people recently diagnosed with breast cancer, two friends whose facebook pages are being monitored by their own loved ones because they have passed on, a friend who was in a serious car accident this week, several friends who are expecting babies or just had babies, and then all the funny pics and posts that crack me up.  I even learn things – like the Hornets coming back to Charlotte.  Dan asked how I knew about that and I said Dion-on facebook.  I know some people are facebook haters but I love it. 

5.  Hm, what else do I have to say.  Work is going good.  I love the company I work for (Ally Bank / Ally Financial).  I am an Audit Director there.  My team is great.  I love my boss and our leaders are fantastic.  They’ve been very supportive through our whole adoption process (it came on pretty suddenly and right in the beginning of our plan year).  I’ve also dedicated some of my maternity leave hours to work from home – just trying to keep things on track and help with some sudden projects.  This shows me how much I like my job. 

6.  My sister Natalie – my bestie and the person I talked to twice a day as she came to watch Aidan over the past three and a half years.  She is the best littlest sis ever, the best nanny ever, the best mom ever.  Her daughter Marley and Aidan have grown up like brother and sister.  Right after we adopted though, she sadly told us they were moving to Lousianna for 6 months and then to Texas for a year or two.  This was devastating for our whole family.  I am not a crier unless it’s something pretty serious, but man, did Natalie and I cry when we hugged goodbye.  I miss her so much.  I can cry now just thinking about it.  I miss Marley too, her daughter (3 months younger than Aidan).  When I hugged her goodbye, I told her she was my favorite neice and that I loved her so much.  She looked at me like “why are you crying?!”  They are too young to understand completely.  My family has always lived in the same town so this is a really hard adjustment for our whole family.  Natalie’s husband Matt – he is really close with his family too.  We all miss them so much.  I am trying to learn to Skype.  No luck so far.  I thought I was tech savy but apparently I’m getting old.  Move back home Nat!

7.  Aidan is at preschool full time now.  He loves it.  He is the most social kid you can imagine.  He is definitely the power kid in the class.  Mister confident and mister smarty pants.  SaraGrace is growing fast.  She’s probably like 11 or 12 pounds now.  She started smiling at 3 weeks.  Pretty amazing.  I am in love with both my children.  I never thought I could love anyone more than Aidan, but man, was my mom right – you love all your children equally.  They are my world. 

8.  I guess that’s enough for now.  I really didn’t have a point to this blog post other than to just write.  I like writing and have missed it.  And I want to write about more than just stupid breast cancer.  :)  Enough said.

4 years!

Keeping this extremely short but today marks my 4 year survivor day and Aidan’s legal adoption decree day. We are also currently in the process of adopting a baby girl due in a few weeks! Life is good!!

Grassroots Baby…….Grassroots!!

If you are between the ages of 30 and 65 with no personal history of cancer, please consider joining a grassroots research study called Cancer Prevention Study-3 (CPS-3).  The purpose of CPS-3 is to better understand the lifestyle, behavioral, environmental and genetic factors that cause or prevent cancer and to ultimately eliminate cancer and create more birthdays.  Participation is easy and enrollment is being brought to the Greater Charlotte area at 9 different locations.  Please see my earlier posts for more details or visit www.cps3greatercharlotte.org to get enrolled.  Please send me a message if you sign up so I can add you to my recruit count!  Thank you to all and to all a good day!  :)

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