cowden’s – beatingcowdens

Bookends

Published on August 31, 2012 by beatingcowdens1 Comment

So my little girl took some of the influence of her Dad and has taken a liking to comic books. She has been reading them on her Ipad, and although I might not admit it to either one of them, I kind of like the idea. I like Superheroes, and their “Good beats evil” message. I know it doesn’t always work out that way, but she is 9…

I sat in the MRI room with Meghan tonight – again. And even though it is a wonder I could think of anything over the banging of the machine, and the remnants of this migraine I have been fighting for days, I kept thinking of bookends.

Yep, bookends. See, back in June, on the first day after school was out for the summer we went for an MRI of her knee. It was a Thursday, the Thursday before July 4th. So, how ironic I thought, when earlier I was sitting in another MRI, this one of her brain, on the Thursday before Labor Day.

Bookends. Our summer ends the way it began, waiting for test results. Although I am starting to get the feeling that this testing and waiting will transcend all seasons. I will just notice it more in the summer – the season where I have one full time job (Mom to Meghan,) rather than two (Mom to Meghan AND teacher.)

And I am reminded of the image of the dog digging up the street that Meghan found for me a few weeks ago. This is what we do.

We do not accept anything less than an answer that makes Mommy comfortable. When the doctors tell me that puberty is just starting earlier these days, I buy it – to a point. When they tell me to consider all the hormones in the milk, and the chicken, I raise an eyebrow. My girl who has been dairy free since she was 15 months old, and has almost never consumed a piece of nonorganic chicken, who is at or below the weight for her height, and who has a mom who went through puberty LATE, should be one of the early ones… I just don’t buy it. So when the hormone tests don’t match, and I get doctors refusing to answer me, I push harder. That is what the MRI was today. My fault. I needed to have them rule out a pituitary tumor. We have Cowden’s Syndrome. We grow things. Someone should check. Just sayin… Then, when the results are clean in a few days I will breathe deeply and accept that this just IS.

And the recurrent strep… well lo and behold, the ENT said there is regrowth of the tonsil tissue. He wants to see her the next time she has strep. He shouldn’t have to wait too long. He also told me the right lobe of her thyroid was quite enlarged.

So we wait for the thyroid panel, and wonder if it has changed drastically. And, we think of those nodules on her thyroid and the doctor who told me they will turn… not if – but when.

Bookends.

We started the summer at the doctor. We spent most of the summer at the doctor. Scan this, check that. It will never happen like this again if I can control it, but it was necessary this time.

And in between the bookends of MRIs, we fit in some fun stuff. There were some great play dates. a day trip to the beach, some swims in the pool. a FABULOUS trip to Disney, a week of Vacation Bible School – (although not our “favorite”one.) There were some lazy days, and lots of just being together time. We can get a lot of talking in on all those trips to the doctor.

I guess the summer wasn’t a total loss, and yet still somehow I feel sad. Cheated. I stress at the thought of the scheduling complications being back at work brings. Holding up the appointments of a regular kid (eyes, orthodontist, swim class, PT, dance…) is tough enough. Complicate it with Cowden’s x2 and it gets hairy.

Maybe I feel like this every summer. Maybe I just love my girl too much. Time marches on. School next week ready or not!

“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!

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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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.

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!

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.

The Mommy Monster is BACK!

Published on July 14, 2012July 14, 2012 by beatingcowdensLeave a comment

See… all it really takes is for the wrong person to tick me off, and the tears just dry right up!

We went out today. I told you I like Saturdays. Family days. No doctors. We went to visit my parents, and my grandparents. Saw my sister and my nephews. Then we spent the afternoon with friends at a birthday party for 3 year old twins. Good times. I was even able to eat a slice of pizza. I have had less than no appetite these last few months, so I was impressed. Feeling pretty good we got home around 6 – and took in the mail.

It was clearly a bill, but I wasn’t prepared for it to read $750, “previous balance.” Followed by an admonishment that we should pay immediately.

Again I repeat, “HAS EVERYONE LOST THEIR EFFIN MINDS?”

There are things we don’t do in this house. We never give money to phone solicitors, and we NEVER pay a non itemized bill – ever. Not even if it is for $7.50.

So I went down to my very thick “pending” file, to find that on November 29, 2010 (because this is for surgeries in December of 2009 and April of 2010) I sent them a LONG and detailed letter with all the EOBs attached, stating why I owe them nothing.

Really, stupid people who choose not to do their job, and make work for other people REALLY annoy me!

As I got all fired up for Monday’s battle, I noticed the answering machine was flashing.

Checking the message I saw it was a Massachusetts number. At 4:30 PM today, apparently Dr. K from Boston was in his office reviewing Meghan’s MRI.

I sent him the report yesterday after my visit in NYC. I also sent him a cover letter which essentially said, what Dr. R had concluded – that there was no mass in the knee, and that Meghan is still having some pain in the knee. I closed the brief cover letter by asking him to keep the report in her file should I need him at some point in the future. I made a point of telling him “If I do not hear from you I will assume you are in agreement with Dr. R’s findings.”

SURPRISE! More opinions weighing in from up north in Boston.

Dr. K’s message said the knee MRI “looked good” in terms of him not seeing blood on the joint. He said, ” I know what you wrote about Dr. R not seeing a mass. I just think if she has symptoms you should bring her to me for evaluation. Give it another few weeks and come up in the early fall.” (Sure…. no conflict with the school calendar there)

Relieved to hear the “old boys club” doesn’t supersede professional opinion in this case.

As for what happens next – who knows? Every day is a great adventure for sure. At least the Mommy Monster is back in full swing. Looking forward to fighting the good fight Monday morning.

I will probably call Dr. K – just to be clear on his thoughts too. It’s Saturday night. Monday’s agenda is set. And I have set my own internal countdown to Disney – the family vacation. Keeping my eye on the prize. God willing the doctors can’t find us there.

Headed to bed now. Tomorrow I will take my family to a cute little church a few miles away from the one I grew up in. The people I love aren’t there, but they are nice people too. And we will thank God for the blessings that have come from a week of ups and downs.

Cowden’s Syndrome is exhausting… but we can take it!