I grew up taking some things for granted. And, when you are 39 it is quite easy to forget there are some things even the brightest 9 year-olds don’t know.
It has been a long week. One of doctors, and appointments. Lots of homework. Running errands to try to catch up on our lives. Felix’s grandmother, who Meghan and I barely knew, passed away this week. Emotions. Pain. The hearts hurt. The hand hasn’t healed quite yet. Physical Therapy. Lots of processing for my deep thinker.
I know Meghan knew this was “Holy Week,” if f0r no other reason, than I had told her.
She participated in the Palm Sunday Service last Sunday and understood everything in great detail.
Wednesday our church set up “stations,” where you could travel to experience Jesus‘ last days. There was fragrance, 30 pieces of silver, bread, wine, a cross to nail your sins, a stone to imagine the weight of the one in front of Jesus’ tomb. There were 13 stations in all. Each one a meaningful experience – traveled through alone or in a pair.
At each station there was a Bible passage, and a scenario. There was a way to put yourself in the situation. Meghan and I traveled most of the stations together, talking and sharing as we went. Long productive conversation that night.
We did not make service last night, but tonight, we headed into the “Good Friday” service.
I had never experienced a Tenebrae service, or a service of shadows. There was a huge cross of candles in the front, extinguished one at a time as various readings were completed.
And, knowing her so well I watched Meghan through the service become increasingly uncomfortable.
When we left and asked her about it, she told us she never knew the story of Jesus’ death. She had heard it told, but never read from the Bible. She had no idea the extent of His suffering. She was amazed that He could still love us after all the awful things that went on.
Long, long discussions. Just starting to wrap up.
My first reaction was guilt. Had I failed as a Christian mom?
Then I realized, as always, things were happening as they were supposed to.
I was learning lesson upon lesson just hearing her speak.
We are so weighed down by the earthly problems, that we sometimes forget. We sometimes lose focus.
Cowden’s Syndrome, cancer, PTEN, AVMs, viruses, surgeries, whatever the suffering,… we are children of a loving, forgiving God.
Jesus died to save us from our sins. To lighten the load. To eliminate the judgment and condemnation that sometimes weighs on our hearts – so we can concentrate on the important stuff.
And on the third day He will rise again…
How blessed are we? Sometimes I need my 9 year old to remind me.
Maybe tonight I would have to call Meghan the “Guest Blogger.”
What you read below is her speech. She was asked to prepare something to read for her school for “Rare Disease Day” on Thursday. She is an excellent public speaker, and fights only a few “butterflies” before she speaks. She always makes me so proud. I wish I could be there!
The text of the speech was written by her. I typed it, and then she went back in and changed it again. I added the pictures… just for here – because I like to!
She will review the speech with her principal tomorrow, but I don’t expect many changes.
Some of you, who know me, know me as Meghan Ortega. Or, maybe you know me as Meghan from 4th grade, or Meghan from Mrs. Worsdale’s and Mrs. LaMonaca’s class.
You might, if you know me a little better, know me as Meghan who loves to read, and swim. You might know me as Meghan who loves dogs.
Maybe you know that I have 2 dogs that I love, and a mom who is a teacher and a dad who is an electrician.
Lucky, Meghan and Allie – My three girls
But, until today, very few of you knew that I am Meghan Ortega and I suffer with a Rare Disease called Cowden’s Syndrome.
Until September of 2011 I didn’t know I had this Rare Disease. What I did know was that something was wrong and my body was far from that of a “normal” kid.
For as long as I can remember, every week of my life has included AT LEAST one doctor’s appointment, and lots of times even more.
You’ve all been to the doctor and you know it’s not fun. It involves waiting and waiting…and even more waiting. It also involves poking and prodding. For me, it often means being sent to more and more and more doctors…
My mom says when I was a baby I wasn’t really comfortable, and I cried all the time. I almost never slept, and wouldn’t drink my bottle.
When we talk about it now, we think my body knew I couldn’t handle dairy products, and dairy is in milk.
Mom also tells me that I started seeing lots of doctors when I was just a few weeks old. Soon there were doctors to check almost every part of my body.
I have had 9 surgeries. I remember having my gall bladder out before I turned 4. I also had a lipoma (a soft tissue tumor that people with Cowden’s Syndrome get.)
I had knee surgery 4 times for an AVM in my right knee. An AVM is a vascular malformation. It is also common in Cowden’s Syndrome. It feels very strange because it pulses like your heart beat. Every time I had that surgery the doctor thought I wouldn’t need another one. But they have already done 4, and they are not sure if the AVM will ever go away, so I will probably need more.
Because I am in pain so much, I get physical therapy in and out of school. My outside physical therapist, Dr. Jill told Mom that she should take me to see a geneticist. I didn’t really understand what that was, but we went because that is just what I do.
Dr.Pappas at NYU was really nice. He examined me and he talked to me and mom. When he was done he drew some blood. He said he was pretty sure of what I had, but we had to wait for the test results.
In September of 2011, just as I was starting 3rd grade, we went back to his office and he told us that I have Cowden’s Syndrome. It means that my PTEN gene is broken. Your body is made up of all sorts of genes, but these are G-E-N-E-S, not J-E-A-N-S like the ones you wear. PTEN is the gene that keeps your body from growing tumors. Because mine is broken I get more growths, like the AVM, the lipoma, and the nodules on my thyroid that I have to have checked every 6 months.
As soon as I was diagnosed, the doctor talked to my mom and said she probably had Cowden’s too. He took her blood and a few weeks later she tested positive.
Because of the Cowden’s my mom had lots of tests done, and it explained a lot of things about the 17 surgeries she has had. On March 5th it will be a year since she had surgery for breast cancer. She is just fine. She says that knowing she had Cowden’s helped her find it early. She says to everyone that my diagnosis saved her life.
When I am here at school I smile a lot. I don’t like to dwell on anything bad. We spend enough time with doctors so I try to enjoy my time with kids.
You would probably never know by looking at me, that I am in pain a lot. I take medicine every day that helps my joints hurt less than they used to, but still most days I have pain. It is hard for me to climb up the stairs, and play at recess, but I do it.
We first heard about “World Rare Disease Day” last year, but at the time we were a little too stunned to do anything about it.
This year I told my mom I wanted to do something to make people more aware of Cowden’s Syndrome and all rare diseases. I was not ready yet to do a fund raiser – I just wanted to get the word out that Rare Diseases like ours exist. There are over 7,000 of them!
I shared my idea with Mrs. Manfredi and she said I could give out the ribbons and information you received today. I was really excited.
“Hope it’s in our genes” is the motto of the Global Genes Project. They try to raise awareness and find cures for all rare diseases.
Today I think it’s important for you to know you can’t ever really judge someone by how they look on the outside. You never know what’s going on inside of them.
This is the letter I send in my Christmas cards… shared for my “on line” friends.
“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34
December 2012,
Dear Friends,
It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus. This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.” Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.
Life in the Ortega house continues to be one of adventure. We are blessed. Meghan excels in school, and loves to swim and dance. Medication allows her to move her body without pain. We are grateful each day for each other, as it is that bond that allows us to weather the storms of life. And there have been some this year! Some time in early spring, Felix joked that I should start on my Christmas letter. He wasn’t kidding.
We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”
We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist. We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ. We have been scanned repeatedly – each MRI separate. Sonograms of every body part you can imagine. All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.
There is so much overlap as to how everything came together this year that it is even hard to summarize. I feel like sparsely a week went by without an appointment – many of them in NYC. I laugh now at the days I swore I would NEVER drive in the city. I don’t use the word “NEVER” much anymore.
In February, Meghan endured her 4th surgery for the arteriovenous malformation (AVM) in her knee. The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap. We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.” Again, not if, but when. So we wait. She will be scanned again in February to determine the status of the very stubborn AVM. Cowden’s Syndrome complicates any vascular anomalies.
In March I underwent a “prophylactic” bilateral mastectomy. After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step. Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction. The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast. The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.
Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later. A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy. So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.
A month later we took Meghan for her thyroid scan to Sloan Kettering. We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area. So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27th we go.
Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney. Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists. I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!
In the midst of our medical “stuff,” life continued around us. In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan. A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed. Our hearts will never be quite the same.
Meghan and GGpa
Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps. No one is quite sure exactly what happened, but it is evident that the angels held her that day. She suffered a serious head wound, and severe bruising, but broke nothing! She spent days in ICU, and returned home the end of that week. With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day. I admire my grandparents. As they approach their 67th wedding anniversary, they stand together as examples of marriage as God intended it. They are role models to us all.
Love my Grandparents!
Their marriage reminds me that God gave me a great gift when he sent me Felix. I can say that we share such love through God’s grace – that I can not imagine my life without him. He is my soul mate – and my sanity!
I guess I leave you with – to be continued. No words of wisdom this year. We are trying our best to take it one day at a time. The tree is up. We have our hearts and our heads focused on what matters. We certainly have had plenty of lessons!
We would love to hear all the things that are new in your home!
Warm Christmas Blessings,
Lori, Felix, Meghan, Allie & Lucky Ortega
“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story
The cards were in the mail Sunday night. I was getting it together.
Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.
I stopped at the stop sign. I looked to my left down the one way street I have traveled so many times before.
I was clear… and I drove.
3/4 of the way through the intersection…
I really did love my Hyundai
I didn’t see the SUV until it was in my rear driver side door. I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.
His car ended up a block away. There had been no braking. No horn. The impact shut his car down.
As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.
The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.
I have laughed and cried a lot over the last 24 hours. I am grateful that I am walking and moving. I am tolerating the muscle spasms and bruising.
As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood. What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.
The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to. Maybe… just maybe.
So I think of my little love.. and I am so happy she is safe. And maybe that thought is where I will draw my peace.
“Sometimes your blessings come through raindrops…”
Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….
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…
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…
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.
Apparently this has become like a sleeping pill to me. This is the place I go at night, to sort out all the emotions of the day before I can try to find some rest. I can’t imagine that will do anything to gather more readers, but it is certainly helping my sanity.
I am trying to find the balance, for both my daughter and myself. The balance between being properly scanned and “on top” of all our countless risks, while not letting doctors take over our lives. Because the truth is, they don’t know a whole heck of a lot about Cowden’s Syndrome. Most of them don’t care to find out, and the few that do, well – I will let you know. I think we have 3 between us that seem truly willing to learn.
So today I took Meghan to the vascular surgeon. The same doctor that has embolized the AVM in her knee 4 times. The same doctor who in February, right after the 4th procedure, handed me the name of a doctor in Boston. “We just drained 30 ccs of blood from under your daughter’s kneecap. I don’t know why it was there. You should go meet with this doctor and see what he has to say. He will likely want to put a scope under her kneecap after she has healed.”
After ascertaining it wasn’t an emergency, but not something we should sleep on, we met Dr. K in Boston over the April break. He examined her, without the CD images that I had pleaded with the NY doctor to send up 3 weeks PRIOR to our appointment. He said he wanted to keep an eye on it, and to repeat the MRI/MRA in 6 months.
So we did. And on Monday the PA who had been in the OR with the surgeon and my daughter 4 times tried to tell me there was nothing in her knee.
Today, armed with a 2 page report and the paper the surgeon gave me in February with the Boston doctor’s name on it, we went for our visit.
I am still confused by the number of inconsistencies that happened in one small room. The surgeon began by taking back his concern from February and telling me he just wanted the Boston doctor to get a baseline on Meghan “just in case.”
Which, I though to myself, I am sure is true because I definitely would have made a 5 hour drive 4 weeks after a double mastectomy if he was so nonchalant.
Then, he held to his story that there was nothing in her knee. Even as I pointed to an obvious bump he told me it was nothing. I questioned him on the report, the one that says there is a stable 2.8 x0.7cm mass. He told me he reviewed the CD and disagrees with the report. Even as I told him I found the report to be strikingly similar to the December report, he offered to sonogram the knee to confirm “nothing.” On sonogram he said there is a gathering of tissue (do I need to define mass?)
So, he said to bring her back in 6 months. They will reevaluate. Then we will repeat the MRI in a year.
Have I mentioned I cry when I am frustrated?
Well somewhere about 10 minutes into the conversation, when he was busy changing his story and disagreeing with the report I got overwhelmed. Shouldn’t have done it, but I cried. Fatal mistake. I now look like a complete ass, when that is his job. And he does it better than I ever could. He actually had the nerve to lecture me that I would make my daughter upset. I still can’t believe I took that. (Still stewing!) AND, I shot Meghan th evil eye to keep her quiet and remind her of her manners.
I HATE the crying thing. I have been working on it for years. UGH!
You know I wasn’t crying because i was sad. I actually was really relieved at the thought that no surgery was necessary. I was frustrated by arrogance, lack of clarity, and overall lack of concern for my daughter the whole person.
See, no one else knows the tears she sheds about this damned knee. The things she can not participate in, or the modifications she has to make just to avoid pain. She does them effortlessly. Every day. No one knows except me. And it kills me.
So when we were leaving I tried to find the bright side. I said, “See, at least you won’t need knee surgery this year.” To which my far too bright, soon to be 9 year old responded, “I am not sure. To me surgery makes it worse, and not having surgery means no one is going to do anything to make it better. Guess my knee is going to feel this awful forever!”
Now I could have tried to tell her that maybe it will be better by itself, but I respect her way too much, because as much as I would love to believe it – I don’t.
AVMs are difficult to deal with anyway. When you combine them with a PTEN mutation, they are ridiculous to control.
Just one aspect of a multifaceted disease.
I really wish I had kept my broken genes to myself.
Tuesday when the doctor didn’t call me with the MRI results, I was really irritated. Annoyed enough that I called the imaging center where the test was done and asked them for a copy of the report. While regulations prevent them from faxing it, they did put it in the mail. I received it yesterday, but since we were having such a nice, “normal” day, I decided to wait and open it today.
Now, if you are frequently ill, or if you have a child who is ill and frequently tested, you become able to decode these reports to some extent. It’s not perfect, nor am I fluent, but I can manage to get the idea. (Kind of like after 12 years of being married to a Puerto Rican man, even as a woman of Irish, Norwegian, and Dutch descent, I can kind of “get it” when they talk in Spanish.)
So I took the report down to my computer table, and the first thing I did was compare it to the last one. (Which was easily found in the 4 inch binder of her medical records, in the blue tab marked “images” – but we can talk about my OCD another day.)
Now the truth is I have no business trying to interpret this without the aid of a doctor, but for that – I blame the doctor and his insensitive move to ignore me before his long weekend. So, I will give it a go.
The first thing I notice is that the reports are similar to each other. Since they took place 6 months apart I first rationalize this must be a good thing. There was not any significant growth of the AVM over 6 months. Then I realize she had surgery in February to shrink the AVM. There is NO significant change at all in the size of the AVM.
Under the section marked “findings” it reads “Deep into the medial retinaculum is a 2.8 x0.7 cm… mass” Now I know that’s the AVM, but I had to take out a tape measure to picture the size. Then I figured out the other words were obviously location, so I went searching for some pictures. I took this one-off the www.aafp.org website.
I took a long hard look at this picture and then a long hard look at my child’s knee. I think it hit me for the first time when I did that.
I mean, I have always known her to be in pain, a pain I belive to be very real and very intense. But she has often said to doctors, and to me, that her knee is “swollen.” That finding is always discounted by doctors reading these reports because it says “no joint effusion,” which translates into no swelling of the joint.
But, anyone who has had a splinter knows the irritating feeling of having something in your skin, and the desire to remove it.
So, when I think about the doctor, incidentally the same one who didn’t call me Tuesday, telling me for several years that “AVMs don’t cause pain,” I must say I have an overwhelming desire to cause HIM pain. Maybe AVMs in and of themselves, in certain locations, do not cause pain, but I can not imagine that a mass, almost 3cm by 1 cm imbedded “deep” in the medial retinaculum would NOT cause pain. I can also understand why the feeling of a fairly large pebble formed by blood, capillaries and veins, and shoved into one of your knee ligaments might make you use the word “swollen” in error when you are 8. It has to feel AWFULLY strange to have something IN there.
The question is – what do you do about it? When I ask Meghan to straighten out her right knee, she can’t. She can’t “sit like a pretzel” in school, and she can’t put her leg straight out in front of her. Her range of motion is clearly restricted.
Lots of arteries mentioned here, but the femoral is one of the large ones, that branches out. When they did her surgeries, three of the times they entered through the left femoral artery, and pushed the camera over and down to the right knee.
For them to say now that there are feeders from the distal superficial femoral artery, it seems that puts them right at the spot of the AVM.
So, now what?
I guess I am no better off than I was if I didn’t have the report. Aside from feeling a bit empowered, I have NO idea if this means she needs surgery – or not. I have no idea if it is OK to let this mass stay there, even though she can’t run, or jump, or do lots of things she wants. Maybe it is OK, and we will just watch it – every 6 months like the thyroid. Maybe it has to come out.
I guess I will find out tomorrow.
But, for Meghan it doesn’t really change her reality. She will have pain and restrictions with or without the surgery. This thing can easily come back – even if they get it all. So for now every single step she takes is internally a painful reminder to her, of what she has been given to endure.
It is amazing to me how infrequently she complains – about anything. She is my hero.
“…You can get so confused that you’ll start in to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear, toward a most useless place. The Waiting Place…
…for people just waiting. Waiting for a train to go or a bus to come, or a plane to go or the mail to come, or the rain to go or the phone to ring, or the snow to snow or waiting around for a Yes or a No or waiting for their hair to grow. Everyone is just waiting.
Waiting for the fish to bite or waiting for wind to fly a kite or waiting around for Friday night or waiting, perhaps, for their Uncle Jake or a pot to boil, or a Better Break or a string of pearls, or a pair of pants or a wig with curls, or Another Chance. Everyone is just waiting…” – Dr. Seuss
I ABSOLUTELY DESPISE THE WAITING PLACE!
There is more to the book. Lots more, but this is the part that keeps running through my mind, right now, at 1 AM, as I sit buried under a pile of papers. There is some combination of house bills, medical bills, medical errors that need to be corrected, and “this just has to wait because I can’t deal with it right now.”
I successfully organized a lot, and have a bag of shredding to prove it. This makes me happy. I like order. I strive on structure. I can sometimes be a little difficult to live with because in my house every toy, every item, has a “home.” Nothing is left laying around. I will confess to being a bit compulsive.
Why? People ask all the time. Why, with all you have been through, why after the breast cancer, the hysterectomy, Meghan’s surgeries, WHY does it matter if your floor is mopped and your counter is clean? All the time I hear – LET IT GO!
Well, the truth is – I can’t.
I need control. I need to control what I can control, which these past few months hasn’t been a whole heck of a lot. So, if having control over my clean floor and my clutter free desk makes me happy, people are going to have to go with that.
I have mentioned several times that my Mom always says, “You plan, God laughs.” Well we have joked that He has had a few good chuckles this year. While I feel INCREDIBLY blessed for the countless things that have gone well, sometimes the fact that Cowden’s Syndrome invaded our house and stripped me of the ability to plan, schedule, control, and order just about anything really gets under my skin.
After Meghan’s AVM surgery in February, we were told she was likely to need additional surgery in a few months. I did not sign her up for camp, WAITING. We had the MRI last Thursday. She spent 2 hours in the tube WAITING for them to take 5,000 images. I will call again tomorrow, but I will likely spend the week WAITING for the report, and the decision as the whether the next surgery is to happen now or later.
I signed her up for dance once a week, and swimming once a week, but we are WAITING on the MRI results to know if she will complete either of those classes.
Then, with the lack of a structured day she spends her time WAITING and hoping someone will come and swim with her. (That is when we are not WAITING at doctor’s appointments!) Her mother is WAITING for the lingering bleeding from the hysterectomy 7 weeks ago to stop before I head back into the pool.
I feel like these last few months have been full of WAITING. WAITING for surgery, WAITING to go home, WAITING for pathology, WAITING …
I have no control over any of this. I do believe GOD is in charge, and I am so comforted by that belief. It is my human frailty that keeps me searching for ownership and control where it is not mine to have.
I will WAIT. And I will do it as patiently as I can. Cowden’s Syndrome will be full of WAITING – forever it seems.
But, I will wait with a clean, organized house. I can not control this PTEN mutation, or the Cowden’s Syndrome that resulted, but I CAN certainly control the clean counters, and the dog fur… well, most of the time!
Towards the end of his book Dr. Seuss reminds me, and all of us…
“And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)
Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.
We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.
It can be an all-consuming job.
When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.
There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.
There is also the battle of trying to feel well all the time, while convincing people that this is a legitimate illness, and you really are sick.
This is a war my daughter and I are fighting together. Each on our own road, but we are battling the same enemy.
Like in every war it is inevitable that there is collateral damage.
Haughton play park 20070602 (Photo credit: Wikipedia)
Today was the 3rd grade play at my daughter’s school. It was also “Family Fun Day,” where the parents and children in the entire 3rd grade head to a local park and spend 3 hours chatting, playing and sharing a picnic lunch.
It was about 82 and sunny here today. The weather hasn’t been this perfect in weeks.
And I, I was at work. My daughter was at “Family Fun Day” with some very caring mothers of the friends she has in her class.
How is this all connected? Very easy.
If I were not me, fighting Cowden’s Syndrome, and all its ramifications, and taking care of a girl who is also fighting it… maybe I could have been there.
Instead, I missed 4 days of work for her AVM surgery, 24 days for my double mastectomy, 12 days for my hysterectomy, and when there are only 183 school days in the year, you can see the percentages aren’t good.
I got permission to go in an hour late. I got in to see the dress rehearsal of the show. I stole 10 minutes on my lunch to drive by the park. And I spent the whole day thinking how nice it would have been to just take a personal day and hang with my kid.
She is such a good girl. “Don’t worry Mommy, I understand. I am so glad you are feeling better, and I know you need to get back to work. Maybe next year we will all have less surgeries, and then you can come?”
Collateral damage – my girl having to grow up so damned fast.
Lots of 
beatingcowdens 