cancer – Page 9 – beatingcowdens

How Cowden’s Syndrome changed… my phone!

Published on September 29, 2012September 29, 2012 by beatingcowdens1 Comment

I know I have said this before. And, I know that many of you can relate. Since being diagnosed with Cowden’s Syndrome (insert your diagnosis here…) nothing is what it used to be. I am not the same. I have changed. Out of necessity, for survival, and maybe because sometimes its good to get rocked to your core so you have to shake it up a little. Don’t misunderstand me, I am not HAPPY about the diagnosis, or its far-reaching, life altering effects. I am just saying that complacency sometimes has some troubles of its own. A little shake up (or a few major earthquakes) now and again, keep us hopping.

So, when I say to you that my diagnosis with Cowden’s Syndrome has forced my transition into being a Smart Phone user, maybe you can relate. I promise, for me the two are closely connected.

I am frugal. Have always been careful with my money. I love to give to charities, I love to give to friends, for weddings, and showers, and babies, and special occasions. You should know that my credit card balances are respectably, almost frighteningly low, and I have been known to stop and save up for the things I want. And, you won’t catch me spending $100 on jeans I can get for $30, or gleefully sending off the payment for the utility bills without a slight lament that it seems like money wasted.

When we first got cable, I only wanted one box. I resisted the DVR at first too. I lost – both times. But I didn’t care so much because Felix wanted it, and at least it was going to make him happy.

I don’t require a lot. A few pairs of comfortable sneakers, some nice jeans, and a few tops that fit me. I need a working computer, frosted cinnamon Cheerios, and an ice cream cone – often. I am content to alternate between a few pieces of jewelry. I like my house clean and neat – but other than that, it is hard for me to come up with something I want, or need, except for perhaps a few more hours in a day, and less time tied to my computer, which leads me to the reasons it might be time for a smart phone.

Now, Felix got his months ago. And I was OK with that. Again, he needed the boy toy. And, he uses it. He watches videos as he commutes from work, plays with family photos, and scaling down into just one lightweight device made his job as a climbing electrician even easier. When he first got his he said to me, you have to. I said, “No way!” I was still calculating the cost of his data plan and what it would do to our monthly cell phone bill.

But, these last few months have been a litany of medical tests and appointments for Meghan and I. We are constantly awaiting calls, and test results. And, I have found that in Manhattan, many – ok MOST, doctors will Email for convenience. Convenient – if you have access.

I can’t access my personal Email from work. Even if it gets through the fire wall, it’s just a bad idea. So I find myself daily, as I run home from work to let the dogs out – frantically checking Email and responding as quickly as I can. I also find myself waiting a lot, at doctors, at dancing school, at swimming, at PT, wasting time where I could be handling all of this.

So, my husband sat me down for “the talk.”

“Remember after your cancer in March, when I told you to order the Cirque du Soliel tickets for Disney World? Remember when you told me there was no way because the tickets were such and expense. Do you remember?”

I did remember, as I stifled a giggle. He had explained to me that now, having had the “wake up” of our lives – we were to take some chances, have some fun, and DO things we wanted to do. He reminded me that we are fortunate to be able to afford nice things, and sometimes, we need to treat ourselves to family memories. He said, “If having cancer didn’t wake you up, I don’t know what will.”

So, I ordered the Cirque du Soliel tickets last March, and we thoroughly enjoyed the show in August.

Now, he said – it’s time. Get rid of this phone.

old_phone — Probably only a slight exaggeration

And move onto this one.

“It’s time you stop worrying so much about every little detail. Have a little faith. Have a little fun. You have earned it.”

He’s right. He usually is. Last night I ordered my Iphone 5.

It will take about a month. I can wait. Poor Siri will be so busy with reminders she won’t know what to do. And I can’t wait to release a little of the pressure of having to remember everything.

Cowden’s Syndrome, with all the complications it added – means that that smart phone moved from luxury to necessity. And I must admit, I am resisting calculating the new bill because even I am little excited about being shoved into 2012!

And that my friends is how Cowden’s Syndrome (even) changed my phone!

Just Another Day “Off”

Published on September 26, 2012September 26, 2012 by beatingcowdens4 Comments

We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor! Because, that my friends, is how we roll. Except today wasn’t a high-tech specialist or a visit to Manhattan for testing. Today was kind of ordinary. Today we were at the orthodontist.

Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.

We have been with the orthodontist since she was 7. At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated. At 7 she had a rake put in her mouth. A fixed appliance, similar in concept to a palate expander, but different. A rake is there to break the tongue thrusting habit. She wore that fixed appliance for a year, and a removable nighttime retainer for another year. All the while the progress her teeth and her smile made were remarkable.

So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in. I asked when, and was told, “soon.” It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months.

Quickly doing the math I asked, “She could have them off before Junior High?” Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.

He looked at me a bit stunned and asked, “How old is she?”

“She just turned 9.”

He looked at the XRays again. I asked him if she was too young. He told me her chronological age really had nothing to do with things. Her dental age makes the decisions. Her mouth is ready he told me.

So, we made the appointment and then sat in the car for a long time. She asked me question after question. She was curious about my braces, and her Dad’s experience as well. She wanted to know why I thought it was so good to have them off before 6th grade. She told me she was scared, which I said was normal. She asked me why everything was happening at once. Why was her body growing so much, why is she ready for braces, why can’t she just take a rest? She understands really, she always does. But sometimes she needs the pep talk that we have to press on. She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.

“One more thing Mom.”

I stopped and turned around to look at her.

“Don’t tell anyone at all. Don’t blog about it. Don’t tell your friends. Don’t tell anyone. I want it to be a surprise.”

She might have just as easily broken my fingers, and barbed wired my mouth shut. But she was clear. This was HER secret – not to be released without her permission. And while I may have flubbed once or twice along the way, on the whole I did a darned good job.

She taught me (another) lesson that day. When I share my life here, I am also sharing hers. And she wants, and deserves a say. We have talked a lot since then about whet I can and can not write about. She puts very few restrictions on me, and I appreciate that – but I respect each one. This life is hers too. And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.

So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS. I write about breast cancer and my mastectomy and hysterectomy. I write about her worries about cancer. I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal. I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.

I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.

And then, I let her read. If it bothers her. It comes out. Its only fair.

But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness. She gets it. She always does.

So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.) There were some tears then. Some frustration about wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….

And there was the life lesson for today. For both of us. We stayed calm. We had another long talk about how “everyone has something” even though it seems she has an awful lot. We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her. That young lady never seems to complain either. Maybe that’s why Meghan respects her, and is drawn to her. Kindred spirits? We know quite a few.

We got the bracket fixed. We headed to Party City. We got a bargain on matching Halloween costumes. We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November. Slowly, the smile crept out.

We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth. Soon they will become natural, like all the other bridges she has come to and crossed in these nine years.

Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.

She is sleeping peacefully, all content pre approved. 🙂

Another day off, another mission accomplished. One day I would just like the mission to be a day in our PJs!

before braces 92612 — Award winning smile – even before the braces!

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!

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!

“I plan, God laughs.”

Published on August 24, 2012 by beatingcowdens1 Comment

My Mom says this… a lot. And she is usually right. I am a planner by nature. Mom, although sometimes reluctant to admit it, is a planner too. The difference is that the wisdom of her years have helped her tone down the level of planning so it is a bit less obvious, and she has also – wisely- learned to keep many of the plans she does make – to herself.

I like to organize everything, and quite simply put – Cowden’s Syndrome is chaos. At least right now.

I mean eventually maybe it will fall into a neat little schedule of screenings, and routine visits, but right now – not so much. If you saw the legal size yellow pad on my desk you would chuckle. I have appointments planned until February of 2013. And, at first glance to list doesn’t look too bad. I was proud. I got to these appointments early. They are all routine. They will all happen after school or on vacation days. My terms. But then we get to the unscheduled ones… and the follow ups… and the new visits. That’s when things start getting hairy.

I called the oncologist‘s office today to get the results of my MRI. The oncologist is away until Tuesday, but a very kind nurse called me back in about an hour. She said, “Everything is benign.” I wasn’t sure to be relived, or panicked. What “everything?” So she started with telling me my liver is just fine. (Well thank goodness, because I hadn’t even THOUGHT to worry about my liver.) She then proceeded to tell me there was a “small cyst” on my kidney, but that was probably no big deal. (And probably not a worry unless you live in a subgroup of people that have a 33% lifetime incidence of renal cell carcinoma.) She continued by telling me my spleen was “a bit more involved.” Hmmm… never have those words started a positive conversation.

The last two times I have had abdominal sonograms, both have very matter of factly stated that there is one 3.5 cm harmatoma on my spleen. Ok, I had decided all by myself… if it stays 3.5 cm and behaves, we will just leave it there.

Well, apparently there is a “vascular lesion” that is a “significant” size, and “several” small harmatomas on the spleen.

So I said, “what does this all mean?” That is when she said we would have to wait until the oncologist returned to determine the necessary next steps.

“Can I have a copy of the report?”

“I would rather not send it to you until you speak to the doctor. I just wanted to reassure you there were no malignancies. She may want you to come in.”

Which is where I did laugh out loud. Come in – to hear a summary of what I was just told? No thanks. Just tell me what I need to do next and I will get it done.

I looked at my nice yellow pad, where September previously had no appointments, and I see the colonoscopy written in for the 18th.

I have to say I was pretty sure 2 major surgeries for me, meant I was done for the year. There goes that planning again. Maybe I will keep my spleen and its harmatomas forever. Maybe they will make me have it out. Truth is I have no idea. And I can’t plan for it at all.

School starts in a week or so. My life apparently doesn’t always jive with the school calendar. I will have to roll with it.

More importantly, Pop’s birthday is tomorrow. He is 93, and a true inspiration. My family will gather at my house to celebrate him. I couldn’t be more excited.

all-about-me — I really think I am OK with this concept, but we all need a reminder sometimes!

I will get my results Tuesday, and life will go on. It will all work itself out, as it has for… well forever. I will try to keep the planning in check. I really do try.

The only thing I am planning tonight is how many chairs I need for Pop’s birthday celebration!

Whose afraid on an MRI? Not me – practice makes perfect!

Published on August 23, 2012August 23, 2012 by beatingcowdens4 Comments

So as I was positioned to be rolled into the MRI tube today, I realized my heart wasn’t even racing. Not that I ENJOY an MRI, it’s just they have become so familiar that they no longer provoke the anxiety they used to. I have held onto Meghan‘s shoulder through countless knee MRIs, and this past year have had quite a few of my own.

Today it was an abdominal MRI. Now if you have been following the story at all you know my abdomen is missing a few things. You may or may not know that there is also the issue of a harmatoma (basically a fatty tumor) on my spleen from this PTEN harmatoma tumor syndrome. Yep, that’s the other big fancy name for Cowden’s Syndrome – or more technically it is the umbrella term that covers Cowden’s and several other syndromes.

So, why the MRI? Well among the other neat cancers that seem to come with this genetic mutation, is renal cell carcinoma. A recent study, the same one that put the lifetime breast cancer risk at 85%, placed the risk of renal cell carcinoma in Cowden’s patients at 33% Yep, quiet old kidney cancer – hiding there until it causes you a problem. So, they like to screen for it – twice a year with an abdominal MRI.

http://www.ncbi.nlm.nih.gov/pubmed/22252256

Part of me wishes they could just do the kidney. You see I have this theory about taking the used car to the mechanic… You just sometimes find out more than you wanted to know.

I really am not in the mood to lose any more organs. I think I have reached my quota for the year. And I have to tell you, this is one hell of a way to lose a few pounds.

So, somtime tomorrow or Monday the oncologist will call me. She will tell me that the kidneys look great. She will tell me that the harmatoma on the spleen hasn’t grown, and it can stay right where it is. She will also tell me that the stones they saw on ultrasound in my gallbladder a few months ago are no problem at all. She will tell me all that because that is what I need to hear. And hopefully it will all be true.

I need it to be true. Because I will be busy. An appointment right before the MRI with a new GI set me up for the “necessary” screening endoscopy/colonoscopy on September 18th. The risk of colon cancer is a meager 9%, up only a few % points from the general population, but no point leaving any stone unturned I guess!

Some days I wait for the break. The time when we will be without doctors. Then I realize this is all so new. They are all so scared and confused they are doing all they can when they scan this, study that… Hey, it worked for me when they saved my life with the breast cancer. And, it will work to keep my girl safe as we scan her thyroid religiously.

I am tired. I would be lying if I said anything else. I am TIRED of doctors. But, as I said before… I will keep going, necause there is no choice. Plus, “Everybody has SOMETHING!” https://beatingcowdens.wordpress.com/wp-admin/post.php?post=693&action=edit

At least I am not afraid of the MRI tube anymore!

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.

“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.

Persistence…

Published on August 3, 2012 by beatingcowdensLeave a comment

My daughter found this photo the other day. She was searching “funny dog photos,” and stopped when she reached this one. She came to me and said, “Mom, I think you will appreciate this.”

I don’t know whether I was more impressed by her ability to know that I would in fact get a good chuckle out of this, as it seems to be the story of our lives, or by the photo itself.

Ingenious really. People do this. They create these photos, and some seem silly or insignificant. Until there is one photo, phrase or saying that you really relate to. Then somehow it all makes sense.

As we turn the corner of summer into August, I know we still have a few weeks of vacation left, but I start to reflect.

School begins for me on September 4th, and for Meghan on September 6th. When we share our summer vacation stories, what will we tell?

We snuck in some fun. There were some play dates that were a blast. There was a trip to the beach, even if only for a few hours. There was swim class, and dance class too. There were books galore – read just for fun – far after the three she “had to” read.

But this year there was no camp. And it was strange. I missed the schedule a bit, but it was a necessary break – for both of us.

Practical reasons wouldn’t have allowed much attendance at camp. We were at too many doctors.

Darn Cowden’s Syndrome. Check this, scan that, see this doctor, make sure that is ok. Multiplied times two it could be a full time job. But, since I have a full time job, that I missed an obscene amount of days from last spring while my body parts were being cut away – summer is for all the doctors that we can squeeze in.

Ironically, no one really answered too many more questions.

Persistence.

Before the end of August Meghan will have had 8 (very productive) Physical Therapy sessions, 3 visits to the pediatrician, a trip to the vascular surgeon, the rheumatologist, the oncologist, the geneticist, the orthodontist, our “second” pediatrician, and she will have had an MRI and 2 sonograms.

I didn’t do so badly myself. I will be able to boast 3 surgical follow up appointments, 2 trips to the dentist, a visit to a new oncologist, which leads to a visit to a GI doctor, and abdominal MRI, a dermatologist for a skin cancer screening, and a visit to the thyroid surgeon.

And those are just the ones SCHEDULED through the end of August.

Persistence.

Not sure where it will get us. All these doctors. I will get them on a nice schedule though. Start to consolidate. Double up days. Next Tuesday I have 3 appointments in a row. Why waste time?

They want us to add the cardiologist back in. Just to be safe they tell me. Everyone is so busy covering their own ***, they often miss the important stuff.

I get that the screening needs to be, and that it needs to be intense. It could be argued that this intense screening saved my life. But there is still such a need for doctors with a clue. Doctors who care. Doctors who connect the dots.

Persistence.

Although some days I feel like the dog, digging through the concrete… I do believe it will all pay off.

Actually, it already has.

So maybe it isn’t the “perfect” summer, but its a necessary one. Me and my girl…. together.

Stick Your Face in an Air Conditioner and Deal With It!

Published on July 30, 2012 by beatingcowdensLeave a comment

Maybe that should be the slogan for 30 something (ok closer to 40, I know) women who have been thrust into menopause. Kind of like the equivalent “Put on your big girl panties…”

Estrogen loss and menopause. Two more things I can thank Cowden’s Syndrome for, as I learn all the side effects connected with both – one at a time. At least I can relate to… well, not really ANYONE in my age bracket. But that’s Ok… I am getting used to it.

Fortunately it hasn’t been THAT bad yet, but I have found myself a little sweatier than normal, and I have been known to stick my face in an air conditioner lately while throwing an ice cube down my back.

I am not one to complain too much, but really, the reality of this one took a little time to catch up with me.

Yeah, I know it had to go. Blah, Blah Blah… Cowden’s Syndrome, uterine cancer, suspicious polyp. I get it. Oh, and your ovaries are way too big, too many cysts, let’s take those too. Sure – why not?

Nothing would have changed if I had asked all the questions in the world. It had to be done. And I am learning sometimes it is better not to know everything at once.

So, I am hearing words like calcium supplements, bone scan, and osteoporosis, while I have friends my age going for 20 week ultrasounds. Don’t misunderstand me. I never wanted another baby – but it just seems wrong. Like I have warped into a different reality.

That’s what these last few months feel like sometimes. A bad sci-fi movie. I am the girl who gets all her body parts cut out, one or two or three at a time.

I wonder how it ends.

And, most importantly I hope the movie theater has air conditioning. It’s HOT in here!