Cowden’s Syndrome – Page 40

“It’s not fair!”

Published on August 27, 2012August 27, 2012 by beatingcowdens1 Comment

“It’s NOT fair Daddy!” Came the screech from the basement. I held my breath.

“You can’t do that Daddy! It’s NOT fair!”

When I heard my husband return the challenge with an “Oh yeah? Watch this!” I knew all was well. The giggling that followed sealed the deal.

I couldn’t help but find it a bit ironic that of all the things that have gone on in her life, she chooses a helicopter game in the basement with her Dad, to shout the words,”IT’S NOT FAIR!”

She didn’t use those words once, all summer, when we spent what I equate to an OBSCENE amount of hours in doctor’s offices and waiting rooms. She didn’t utter those words as she was poked and prodded and asked the same questions over and over. “They never find the answers anyway, Mommy.”

She didn’t tell me it wasn’t fair, when instead of planning playdates, or camp experiences we were trekking back and forth to Manhattan, for her, or for me. She simply wiggled in the play time when there was room.

This morning, when I sprung on her the idea that she needed bloodwork, after the bank, and before the orthodontist, she could have EASILY told me. “It’s not fair!” And I would have understood. I know very few people who have given up more blood than she has. And when the lab was full, and we had to come back later, so she could think about it all day, she definitely could have told me, “It’s not fair!” But she didn’t.

This morning when we learned that her braces are imminent, and that she is going to need to contend with them in addition to her new grade and ever changing body – I expected a yell. Nope. “Won’t it be great to have them off before most of my friends even get theirs on?”

So as I scheduled one more MRI this week. This one for her, to make sure the pituitary is its proper size with no extra features… I thought it would be a big foot stamping, “It’s not fair!” Nothing. Just the typical, “Can you stay, and will I need a needle?” Followed by, “I hope I can watch a movie this time because I don’t like having my head done.” How disturbing that this will be her third brain MRI.

This has been one hell of a summer, following one seriously wild spring. I have lost count of the appointments, and it is probably better. They aren’t going anywhere and we will continue to have to roll with it. As the last week of summer vacation comes to a close, and I lament the lack of relaxation, the cleaning that never happened, the day trips that never came to pass, I want to shout, “IT”S NOT FAIR!”

But then I look at my 9 year old. Wise beyond her years. Content to live in this house where she is so loved and appreciated. We have had many talks about the suffering of others through the years, and especially this year. She knows she is not alone in having a tough path to travel. She also knows it could be worse.

Maybe that contributes to the poise and grace under pressure. Maybe that is why she is so insanely mature. Or maybe, in the midst of the chaos that is Cowden’s Syndrome, we – her father and I – are just the luckiest parents in the world.

Life's not fair — But God is good – all the time!

“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!

I got my “FAMILY PHOTO!”

Published on August 20, 2012August 20, 2012 by beatingcowdens1 Comment

I was photo obsessed headed into this trip. I was determined to get a family photo. So, we headed to Downtown Disney in the 98 degree heat, and did our best in the Disney Photopass studio. We had a great time. He got some great shots. Two family shots, and one of Meghan that are just fabulous.

I won’t be showing them here. Well, the one of just Meghan may slip out, but not the others, sorry. I chose one for my Christmas card. And while I was at it, I sent it to Costco to be printed. So, I can not even believe I am saying this, but I have 200 Christmas Cards in my basement August 20th. Ridiculous confession of my OCD – YIKES. Never in all my years have I done that. But, there was the picture, all ready to go, and I figured it was the best way to keep me from showing too many people.

So, you will have to wait for that one. Instead – I will show you some of the Family Photos that didn’t make the Christmas Card!

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.

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.

My Most Special Gift

Published on July 31, 2012July 31, 2012 by beatingcowdens1 Comment

Meg and dogs — Lucky, Meghan and Allie – My three girls

I am sitting on the couch, alone. Unable to sleep because of the pain in my knee.

My left knee and I have quite a history. Pretty much told it was “arthritis” as a young one, but that was never confirmed with lab work. A car accident in 1991 banged it up and started the swelling on and off. Arthroscopic surgery in 2000 to “clean” it out, gave me relief for a few years. Now it, along with the horrendous varicose veins that plague my legs, are temporarily at the bottom of the triage list.

There are other things that we need to do first. Plus, we can’t spend our WHOLE life at the doctor.

So, when I am in my worst pain. The kind that causes me to actually ice and elevate the leg, and I start to feel sorry for myself I look at my daughter’s face and find my perspective.

I will be 40 in a little over a year. My joints have had some time to wear and tear. She will be 9 in a week. She can’t run or ride a bike without pain in her knee. She deals with a mass almost 3cm x 1cm intertwined in the side of her knee.It is always there. Even on the “good days.” She lives with he reality of the AVM that will continue to exist- to grow, and then be worked on, likely to only grow again.

As I climb the ladder closer to “middle age” thinking in terms of pain and management for the “rest of my life” is less scary. Then there is my girl.

Soon to be 9 years old. Gluten, dairy, soy allergies. Pancreatic insufficiency,chronic herpes simplex infection, immune system deficiency, early puberty, Cowden’s syndrome, gall bladder removed, tonsils and adenoids removed (and now growing back), lipoma removed from her back, excess gum tissue removed from her mouth, precancerous thyroid nodules, and an AVM that even after 4 surgeries just won’t quit.

Yet she finds plenty of time to laugh and smile every single day, and precious little time is wasted complaining about anything – from the one who could complain all day.

Life isn’t fair, but I am going to sit here with my ice pack and reflect on the fact that God is good – all the time. And He gave me one heck of a sweet gift in my little girl.