breast cancer – Page 7 – beatingcowdens

Fighting My Way Out of the Cage

Published on September 18, 2012 by beatingcowdens4 Comments

A few days ago I wrote about my dog Lucky – biting through the cage. Well she got her wish, and she is a free dog now. Free to roam around my house, lay where she wants, and drink when she wants. She is much calmer and happier now. It doesn’t take much to make her happy.

Why then can I not take her lead? Why am I living in the cage of my own thoughts?

My husband, he has the right idea. He worries only when it is absolutely necessary. I worry about making sure the stove is turned off. He worries when the house catches fire. Maybe it’s a male/ female thing. Maybe it’s my controlling OCD. Who knows? What I do know is he is MUCH healthier than I am mentally.

I am still quite sane, but admittedly neurotic. Some say it was inevitable after the year we have had. I think it stretched back much farther. I could say parenting a not so healthy child has done it, but if I am honest, I think I have always been this way.

I just read a Facebook friend’s post. She talked about her brain continuing 24/7 even when she asks it not to. That’s EXACTLY how I feel.

I am sure the Cowden’s Syndrome, the mastectomy, the breast cancer, the hysterectomy, the tumors on the spleen, the cyst on the kidney, and the constant screening tests aren’t helping. And those are just mine – not Meghan‘s! We average 3 doctors a week, usually at least 2 on the schedule and a pop up. Each one seems to look, poke and prod and not offer a single answer. Then the tests lead to more tests. It’s a bad cycle we are in here. So then I spend my spare time researching – thinking maybe I can find the answers they don’t know. I end up just as clueless and thoroughly exhausted. Sometimes you have to stop biting at the cage, realize the answers aren’t there yet, and realize you have the power to let yourself out. I am “luckier” than my dog Lucky – no pun intended. I have the benefit of being able to free myself. I just never seem to get it quite right.

I am going to try that one day at a time thing again. I am going to try to concentrate on all the many things that have gone right. I will TRY to worry less when my daughter’s WBC is frighteningly low, while I wait for the retest. I will worry less about West Nile Virus, and just try to treat the 8 mosquito bites on the leg of my immune compromised kid. I swear I will try. It’s not going to be easy though.

When you see me in a fit of worry, feel free to give me a “cyber” smack into reality. ONE DAY AT A TIME!

TODAY – good things happened. I got through the baseline screening colonoscopy and endoscopy. The colonoscopy was completely CLEAN! I do not have to go back for another 3 YEARS! Beats the heck out of the every 6 months they were recommending for Cowden’s patients. Also, my CLEAN scope frees up my little girl for a while. As long as mine stay clean they won’t start screening her until she is at least 18. Breathe. Some minor biopsies on the endoscopy but the doctor is expecting a CLEAN pathology.

For me, for my daughter, for my husband, and for ALL of us who are fighting our way out of the cage. We can do it – one day at a time!

Race for the Cure (minus 1)

Published on September 8, 2012 by beatingcowdens6 Comments

survicor — It won’t be nearly as much fun without my biggest fan!

Tomorrow morning I will gather in Central Park with some 25,000 other runners and walkers, survivors, and friends and family to support the Susan G. Komen Race for the Cure. This will be my first race in a pink “survivor” T shirt, insisted upon by Meghan, my biggest fan.

This was our year. I registered Meghan as a “real” walker. She got an official race day T shirt, and a number too. She was so proud to be walking with her Mom, and Grandma – two “survivors.” She was thrilled to be registered, and wear a number. She was looking forward to waking up super early.

Except, she won’t be coming.

At 6:30 tomorrow morning my Mom will pick me up. We will each wear a special banner designed by Meghan. We will pick up our friend, another survivor, and we will head to Central Park. The car will hold one less this year, and if I might say so myself,

I thought it all day. I thought it to myself. I even hid in my room and cried a little, ok a lot. I had quite the pity party going for my girl. Asking over and over WHEN she is going to get a break, and WHEN is something going to go her way, and WHY can’t she seem to just have some fun when her HEART and SOUL are ALWAYS looking out for other people. And, not to be surprised, she never said once all day that it wasn’t fair.

She encouraged me to go, even without her. She said she was sad, and disappointed, but we made a date for the American Cancer Society walk on Staten Island in October.

She is asleep on the couch right now with 102 fever. She woke up great this morning. By noon she was developing a fever. She was complaining of a headache. By 2 PM she had cleared 102 and we headed out to the urgi center. After an OBNOXIOUS 3 hour wait, we left with the diagnosis of (“It’s probably”) strep, and (maybe) and ear infection. I sometimes wonder if they train to be meteorologists, and end up as doctors – probably…maybe… UGH!

He second dose of Clindamycin will be at 11PM. By noon tomorrow we will know if it was bacterial or viral because she should feel much better, and the headache – that always scares the CRAP out of me, should be gone.

By noon tomorrow I will be home. Back from my race. Full of conflicted emotions. I have been to this race almost every year since 1998, but Meghan kept calling it my “first” race. I will be glad to be with my mom and my friend, but really, what good is any race or celebration without your biggest fan?

One of a kind…

Published on August 31, 2012 by beatingcowdens9 Comments

It probably started in the spring. Meghan’s class had been working on a fundraiser for Alex’s Lemonade Stand. (alexslemonade.org) The entire third grade was raising money for childhood cancer, and she took her fundraising work very seriously.

Meghan decided to make a bookmark, with a picture of my cousin Meghan – Angel Meghan as we speak of her – who died from Leukemia in 1991. She wanted to make her connection to the fundraising personal. As we prepared baskets of bookmarks to leave with people we knew, Meghan decided we should sell ribbons too.

So, I asked her what color? She wasn’t sure what I meant, but I really didn’t know if there was a color ribbon for childhood cancer. So, she took out her iPad and a quick search found us gold. The gold ribbon was the color for childhood cancer.

So we headed to Michael’s and bought up as much gold ribbon as we could find. We bought lots of safety pins. We set to work cutting and pinning.

We dropped baskets off with my Uncle Chris and cousin Katie (“Angel Meghan’s” Dad and sister.) They were eager to help, and passed baskets off to friends of theirs. Before we knew it we were making more ribbons, and more bookmarks.

Meghan was so absolutely thrilled to raise over $500 for the project. It was such a huge success and we were so proud.

That project raised her awareness of her ability to do for others, and helped her confidence so much. It also made her aware, acutely aware, of cause ribbons. She would identify the ones she knew, like the pink ribbon for breast cancer, and she would look up ones she didn’t know. She learned about the puzzle piece for autism, and even yellow ribbons being used when soldiers are away from home. I think that is the project that truly got her using a search engine too. (Thanks Mrs. Azzarello!)

It seemed only natural, that months later, having watched me receive pink ribbons after my breast cancer surgery, and after countless surgeries and appointments of her own, that she would ask what “our” ribbon was. Not sure of course exactly what she meant, I had her clarify. “What is the ribbon for genetic diseases?”

So back to the search engines we went. We tried a few other places. but eventually decided that this was the one.

It made sense. The Global Genes Project had a logo that reflected her cause. This was the ribbon for Rare Diseases – genetic disorders like our Cowden’s Syndrome. It Made sense, their saying, “Hope – It’s in our genes” was catchy enough, and it left you thinking about the connection between genes, and jeans – the denim ribbon.

The next question should have had a simple answer – but it didn’t. She said, “Can I have one?”

Once she clarified that she needed something, something to represent her, and all she has gone through, I understood. She needed a symbol, something to wear that would make it easier to talk to people, that would help her feel proud, and strong, like it all mattered.

Sure, I thought. We will get you something.

Well I looked, and I looked, and I looked. There was nothing. Beyond the sticker I had gotten as a thank you when I sent a contribution to The Global Genes Project, I could find NOTHING for her to own or wear, no jewelry or clothes with this “denim” ribbon.

Well sometimes the best ideas are born out of lunchtime conversation. So, as I sat with some teacher friends the next day, I recanted Meghan’s desire to have her own cause ribbon. One friend, the pure hearted Mom of an autistic son, who was wearing a beautiful diamond puzzle piece around her neck, “got it” on so many levels. And, her husband happens to be a jeweler.

She said, “give me what you have, let’s see what we can do.”

Well I think we all thought it would be easier than it was. But after weeks of searching her husband determined that there was nothing, anywhere like what we were looking for. If we wanted it, we could have it, but they would have to make the mold.

Fortunate to have good and generous people in our lives, we paid only for the cost of the creation of the piece. My friends husband generously donated his time, because he too “gets it.” Their goal was only to make my girl happy. And for that I am so grateful.

After anxious months of waiting, the piece arrived last Friday. She treats it like a rare gem.

It is RARE, a one of a kind beauty – just like my girl. But, never staying focused on herself for too long, she thought – wouldn’t it be nice if we could do a fundraiser, and sell these so that we could raise money for The Global Genes Project?

Well, last Friday we sent them an Email with several pictures. It is a crazy time of year, but we are anxious to hear from them, and hoping that Meghan’s idea, can benefit many others. It would be fitting. That’s just the kind of kid she is.

Meg necklace — For now though, the necklace is “one of a kind,” just like her!

Whose pink shirt is that?

Published on August 21, 2012August 21, 2012 by beatingcowdens2 Comments

survivor — I guess that’s my pink shirt?

It was probably in 1998 when we attended our first Susan G. Komen Race for the Cure in Central Park. Mom had spent 1997 undergoing 2 separate mastectomies, and enduring chemo. Just to top it all off she began a run on 5 years of Tamoxifen.

By September of 1998 she was back to her feisty self, raring to go – so we went. We have gone almost every year since then, save for maybe 2003 when I gave birth to Meghan in August.

A few years ago a dear friend, a new survivor joined us. So one very early Sunday a year, we pile into my Mom’s car and head to Central Park. We look through the stands that are set up. We “shop” for some free goodies, and we pay for some too. Then we head back to the car and drop it all off so we are ready to walk among 25,000 or so survivors and supporters.

We push Meghan in her chair, as the 5K would be way too much for her, but she won’t do without cheering Grandma on. She makes Grandma a banner to hang on her shirt – usually a picture of the two of them. It is a morning of (exhausting) celebration.

So it was Meghan. It is always Meghan it seems, who pointed out to me about a week after my diagnosis of DCIS, that I needed a pink shirt for the race this year. When I asked her why she said, “because you had breast cancer too.”

I thought about that for a few minutes. It was early in the game so the ramifications of what I had been through had not yet fully sunken in. I guess technically she was right. I had the pathology report in my hand. It clearly said DCIS. The breast surgeon clearly called it cancer, and reminded me that a few more months would have put me in a “fight for my life.”

But I had been to those races for many years. I had looked at the resolve in the faces of the survivors. The bald heads of the women still in treatment, and I had read the signs and tributes to those who had fought and lost. I had watched my own Mom endure chemo and years of tamoxifen. Surely I couldn’t put myself in the same class with these ladies?

I suffer I guess with a bit of “survivors guilt.” Some people might chuckle at the thought that my road has been easy, but of course everything is relative, and it is all about perspective.

I did commit to a prophylactic bilateral mastectomy to reduce my imminent cancer risk. That in and of itself is a pretty big deal. Finding out I already had cancer, rocked my world. Knowing that I had already done everything possible to prevent any spread or recurrence, gave me some much needed peace of mind. Angels, especially two I love (one here on earth, and one in heaven) named Meghan, had already kept me from being hurt by Breast Cancer.

Am I a survivor? You bet your ass. No genetic mutation, not PTEN, no Cowden’s Syndrome will take me, or my girl. I am blessed with the knowledge to screen, and the benefits of early detection.

Do I deserve to be in the same ranks of these breast cancer survivors? I am not so sure.

But, I have this pretty pink shirt. And these fake boobs. Maybe that in and of itself makes it OK.

No matter what I will consider it an honor to walk among some of the strongest women I will ever know.

Bra-less in Walt Disney World!

Published on August 19, 2012August 19, 2012 by beatingcowdens2 Comments

I just returned from 9 days in sunny, HOT Florida with my family. We had our 5th annual trip to Disney to celebrate Meghan‘s birthday August 9th. I now officially have a 9 year old!

The trip was great, and I will have loads of things to share over the next few days, so bear with me. But this is the thought I had to share first.

I spent 9 days in Florida and I didn’t wear a bra – not once.

Now I was never huge. Prior to my mastectomy I was a B cup, C if I had gained a few pounds or wanted to make myself feel better. So, when I was discussing my reconstruction options for the new boobs with the plastic surgeon, she was a little surprised when I told her I wanted immediate implants instead of tissue expanders.

She told me that just isn’t the way they do things anymore. She said she wouldn’t have enough skin to maintain my existing size. So I said, “OK, go smaller.” Now she was a pretty small woman herself, but she still spoke to me for quite a long time, wanting to be sure I understood what I was saying.

I did. You see my surgery was as much about my daughter as it was about me. I knew that tissue expanders required fills. I knew that that meant more trips to the doctor. I knew that it meant an additional surgery for the implants, and I knew several people who had suffered enormous infections with them. I also knew I had to get home to my daughter and get about the business of recovering – quickly. So, if that meant I had to go down to an A cup – so be it. It supported the weight loss all the recent stress has brought.

After the surgery I wasn’t unhappy at all with the “new” girls. Once healed I got used to them, and grew more confident. So, when I went shopping for vacation I got a little daring.

All those shelf bra tops. the yoga ones, and the skinny strap camisole tops – well I had a few, and I bought a few smaller ones. Then, I tried them on with no bra. THAT was something I never dared to do before. I jumped, I bounced. I checked. Nothing moved. And, since I lost my nipples to the surgery – nothing stuck out.

Well I spent 9 days in Florida, with minimal hot flashes, helped along by my moisture wicking tops, and no bra.

Best part of all, I am sure NO one had a clue.

After all that has gone on, if I don’t find the bright side, I will crack up. So here it is, just for you – the shots of me Bra-less in Walt Disney World!

You STILL don’t LOOK sick (reblog from 5/26/12)

Published on August 15, 2012August 17, 2012 by beatingcowdens1 Comment

We are headed home tomorrow from a wonderful family vacation. I will have lots of lovely things to tell you about the fun we had and the great people we encountered. Unfortunately there are still some ignorant people… even here, who do not realize you can look perfectly healthy and still be “sick.” There were a few times… especially today when the monorail operator gave us an attitude when we asked for a ramp into the handicap accessible car (even though her chair is clearly marked as a wheelchair.) People can be so frustratingly ignorant. She notices now, and it bothers her, but she is awesome, and she tells me she hopes they never know what it’s like because no one should feel this way. So here it is one more time…

beatingcowdens

“You don’t look sick!”

If I had a dollar for every time someone directed that comment at my daughter or I, I would be retired – a wealthy woman.

We don’t “look” sick. As a matter of fact we look alike. A lot alike. It’s probably due to the fact that I, having the ‘honor’ of being the first in my family known to have the PTEN mutation that causes Cowden’s Syndrome. To look at us, you would see a vibrant mother and daughter duo – 8 and 38.

When I push her through Disney World in her modified wheel chair each summer, I get the stares that say “spoiled.” When I pushed her through the Susan G. Komen Breast Cancer walk last fall so we could support my mom, a survivor, someone actually said “Why don’t you get the ten year old out of the stroller?” Actually she is 8, and she would…

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Thought for the day…

Published on August 7, 2012August 7, 2012 by beatingcowdens2 Comments

A friend of mine posted this on her Facebook page today. She is the kind of person who every day finds something to be grateful for. I love that about her. Those are the people worth surrounding yourself with!

Today was the kind of day that could have gone either way. Three doctors appointments back to back in Manhattan. Meghan and Felix home together. I was a bit bitter about wasting a day.

But I got a spot in my favorite lot, and got in a nice walk. Then I met a new dermatologist who studied me very closely. She KNEW what Cowden’s Syndrome was! And, as she took my medical history about the breast cancer, and the hysterectomy, she said “you look awfully good for the year you’ve had!” I had to smile. She understood the rarity of Cowden’s well enough to call the resident in to look at my gums, and what I have come to learn are “classic” Cowden’s marks on my palms and feet. The resident is studying melanoma specifically, so she let her “double check” and ask me all sorts of questions. What a treat to not feel like a freak and be in a room with people trying to learn. Even more of a treat to hear that all is well, and I don’t have to come back for 6 months.

I made it to doctor number 2 – the endocrinologist with time to spare. So, she took me early. An exam, some conversation about the past few months, (through NYUs new system where all the doctors are linked,) some talk about a bone density test in the next few month, a script for blood, and an invitation to return in 6 months. Wooohoo! 2 for 2!

Early for doctor number 3, the breast surgeon, I had to endure a bit of a wait. She however, is THRILLED with my healing, and said I don’t need to see her for a year! (We will do 6 months just so I stagger her with the plastic surgeon, one every February, and one every August – but still! :-)) She asked about my new oncologist, also an NYU doctor, who had contacted her to discuss my case.

Am I starting to feel like there is a competent team of doctors out there?

So, I made exactly the same appointment, same three doctors, February 19th. How nice to come into the city once and park once, and get three done at once. Maybe… just maybe… we can start to get our lives back, little by little.

I was home by 2. Enough time to spend the rest of the day with my family. Who cares that the black car doesn’t start. We will take care of that another day…

When I saw that picture tonight I had to smile. I could have had a really crappy day – but I didn’t.

Because I decided not to!

“Tell Me All Your Thoughts on God…”

Published on August 5, 2012 by beatingcowdens4 Comments

lutheran church, sydney (Photo credit: Wikipedia)

The line rings in my head. The internet gives me the artist’s name as “Dishwalla.” The song doesn’t make a whole lot of sense to me, but then again the whole religion thing can be very confusing.

I have a belief in God, and faith that there is a higher power running the show here. In many ways that confidence keeps me sane. I mean, what would be the purpose of it all?

Don’t get me wrong, I don’t believe that we are selected to suffer. Not with cancer, tumors, genetic disorders, or anything of the sort. I do however believe that God can give purpose and meaning to our lives. If we seek it, we get confidence to endure the tough times, and purpose. A “share your experiences,” be helpful in every way you can, “pay it forward” kind of purpose.

What I haven’t sorted out, even after all these years, is well, what are the rules?

I mean, I was raised Lutheran. I was baptized, confirmed, married, and baptized my daughter in the same church. I spent my youth in that church. Survived high school with close friends there, and always enjoyed the connection with the people. I believe in the theology I was raised with, and I love the people I worshipped with for so long. But I no longer believe in that church.

The minister has been there for almost 2 years. Long enough to know the people in the congregation he serves. And yet, I have gone through one of the most emotionally tumultuous years of my life and he has never extended a hand. We had a long talk about it. It yielded nothing. He doesn’t care. So, I haven’t been to worship there for months. I would be lying if I said it didn’t hurt me. It pains me deeply. But to me worship has to be about God, and it has to be led by people of God.

See, to me it doesn’t matter if you are catholic, Lutheran, or any other of the million religions out there. I believe for the most part we all serve the same God. What matters to me are the underlying values that go with being a person of faith.

Are you kind to others? Are you tolerant, and understanding of differences? Do you judge others, or do you leave the judging to God? Do you extend a hand to a friend in need? Do you lend an ear when someone needs to talk? Do you hug your loved ones? Do you value, truly value the gifts of your family, friends, and those you are yet to meet?

Those are the questions I ask myself as I interact with people each day. And I ask those questions of ME, not them. It is my role to be there, to be a person of faith, to share my love for others. I don’t think it has as much to do with what building you walk into, as it does with how you live your life.

My brother-in-law is a Lutheran minister. And, while I have at times not always agreed with him on everything (who does?) he models what a Christian leader should be. He has been there for me, as I try to sort out the many thoughts in my head, and his words have provided me some clarity on some tough issues.

So, I know I guess, what I need. Now the question is where to find it? I made a promise when I had my daughter baptized that I would teach her. I do, but I would like so much to have a “home” base where she can be comfortable again. This is all so confusing to her, and yet even as I watch, her faith grows.

We tried another Lutheran church. I am just not feeling it. We are floating right now – seeking. But God has a plan. Of this I am sure.

You see I am confident that the same God who sent the angels to watch over my daughter and I. The one who blessed us with this Cowden’s Syndrome diagnosis (yes, you read “blessed” because as I see it, if she had not ever been diagnosed I would have died of the breast cancer that was hiding inside of me,) will stick by us, no matter where we travel.

I will continue to do my best to live the life of a woman of faith. I previously sharply defined myself as Lutheran. Now, maybe Christian is just a better term.

Forgive my ramblings, and I know this is a touchy topic. But if you are reading this – drop a comment. For lack of a better phrase,

“Tell Me All Your Thoughts on God…” I really want to hear them.

Family Photo!

Published on July 22, 2012July 23, 2012 by beatingcowdensLeave a comment

This year I am obsessed… well with quite a few things, but one of them is not (directly) medical.

This year I am focused on a high quality, everyone looks their best, everyone is smiling, family photo.

We are a family of three. Immediate family that is. (Not including our furry friends Allie, and Lucky.)

Our extended family includes his parents, two sisters, a brother-in-law, and three nephews. On my side, there are my grandparents, (Mom’s parents, my step-dad’s Mom, and my father’s mom) as well as my mom and dad, my father, my two sisters, a brother-in-law and a half-brother, and two nephews. That list doesn’t begin to address aunts, uncles and cousins galore on both sides. Yes, they are all family, but reality will never put them all in one place at the same time, and there are probably some blessings to that. While I love them all dearly, I often say you shouldn’t mix drinks, or extended family!

We have been fortunate enough that we have been able to travel to Walt Disney World in Florida for the past 4 summers. We will be making it a 5th this year. We save and budget all of our “fun” money for a Disney vacation because for their extremely high pricing, we get “allergy safe” meals wherever we eat, and unlimited access for Meghan’s push chair, which she often needs when we travel more than about a half mile. It is the best week of the year for all of us.

It is usually the week of Meghan’s birthday. It is doctor free, no needles, just be “normal” week. We take LOTS of pictures. Usually it is of Meghan alone, or of one of us with Meghan. They are great photos and I treasure them. The few photos we have gotten of all of us in Disney usually have us in sweats, and sneakers – SWEATING. This year we are going to go to the photo studio, and I don’t care how much it costs. Meghan and I have dresses picked out, and matching sandals too. (We just need to pick out something for Daddy who after deciding “stress eating” isn’t the way to go, is down over 20 pounds!)

There are so many reasons why I am focused on this photo. It is FUN to focus on something FUN.

I have been smacked in the face with the reality of the frailty of life. In March I was given a “second chance” as I was told the breast cancer that was “sneaking up on me,” unbeknownst to any doctor – was gone. Gone after a “prophylactic bilateral mastectomy.” Gone before it had a chance to wreak havoc on my life. Gone. But I will not forget the words of my surgeon, “If you had waited until July to do the surgery you would have likely been in a fight for your life.” Instead, I will go to Disney World.

Not lost on me is the reality that 15 years ago next month my Mother finished up treatment for bilateral breast cancer. She is strong, a survivor, still here, enriching our lives.

Not lost on me is the cancer scare AGAIN in May, as they worried about a malignancy in my uterus, before performing a hysterectomy.

I am vividly aware every moment that the thyroid specialist who monitors Meghan’s “precancerous” thyroid nodules, took back his invitation to come back in a year, and said, “we better see you in 6 months. One nodule is starting to dominate.”

I am painfully aware every moment that after one of the strongest, and longest battles I have ever witnessed, we lost GGPa in June to cancer.

My stomach, and my heart hurt for the victims of the senseless attack in Colorado this week. Families out to see a movie – life ended so tragically.

I love to look at pictures. In an age when people have stopped printing them, I have shelves FULL of albums. I love reliving memories, and smiling at al the good times. The albums remind me, that no matter how tough things seem, there ARE LOTS of good times.

Cowden’s Syndrome, PTEN mutation, cancer, NOTHING can take away the memories or the good times. So since 2012 has been quite the year, we will take a “fancy” family photo. One that will hang somewhere in our house and remind us that we can endure the tough times. One that will remind us to hug each other tightly, and to kiss each other when we leave, and to never stay angry over nonsense.

One that will remind us that we are defined by our spirits, and not by the sum of our parts.

We are family, and a pretty special one at that.

One year…

Published on July 20, 2012 by beatingcowdensLeave a comment

One year…

It just sounds better than 6 months. It feels better too.

“Six months” says, we are still a bit concerned.

A year says, “You got this. I’ll just check back and make sure it’s all good.”

One year from now I will visit the plastic surgeon. She will check on my fake boobs, and make sure they are still doing exactly what they are supposed to do. (Which near as I can figure is stay still.)

Next month I visit the breast surgeon. Hoping to get “one year” from her too.

Eventually my life and Meghan’s will be in some type of maintenance cycle. We still have some time before we get there, and there will always be doctor’s appointments – but for now it’s a big win.

The cancer is long gone.

I heal pretty well. Especially on the outside.

Cowden’s Syndrome is good for something.