I saw superheroes today. Not the kind that normally come to mind.
The 9th floor of Memorial Sloan Kettering Cancer Center was absolutely crawling with them.
None of them had capes. And they weren’t any funny colors.
None of them could fly, and yet I am sure that’s what they were.
I saw young bald superheroes with smiles that could light any room.
I saw older, more mature superheroes, heroically managing their IV poles, after teaching a younger one not to cry.
I saw parent superheroes, who although their capes were invisible to the naked eye, possessed nerves of steel, and the ability to make their young one laugh even as they themselves were inches from despair.
I had a lot of time to watch them. We had a long wait this morning. And even as I kept Meghan distracted, my eyes never left them.
The sermon in church this morning had many parts. And I am never sure if what I take away is the intended meaning, but the idea of being “stuck in the middle” spoke to me.
I don’t mean it in the sense you might think.
See, we are not poor by any means.
We are not rich by any conventional standards either. But, if you asked a person who lives in poverty – well to them we would likely be affluent.
It goes back to a concept that I think about a lot.
It’s really all about perspective.
There are many angles to every situation. The angle, or the lens you choose to view it from determines the outcome, and to a large extent the path you follow.
Now, as my daughter and I live with Cowden’s Syndrome, and all its ruthless cancer causing, malformation growing, pain invoking perils, I do NOT mean that if I look at things the right way, or if I am positive enough that that is any guarantee of good health.
What I do mean is that HOW we handle, not only the illnesses we encounter, but the threat of those illnesses will largely determine who we are, our level of happiness, and the effects we have on the people we encounter every day.
We have all been blessed. We all need blessings.
The middle can be a powerful place to be.
There are choices to be made every day. These choices change our lives, and the lives of others.
September is Childhood Cancer Awareness Month.
The fact that childhood cancer even exists is appalling. Meghan and I live with the imminent threat of cancer in this house every day. I don’t go a single day without remembering my daughter’s namesake, my cousin Meghan taken from us by Leukemia at the age of 6 over 20 years ago. But, we could bury our heads in the sand, or we could choose to try and do something to make people realize the number of lives touched by childhood cancer. We can quietly hope it doesn’t happen to us, or we can help the people it HAS happened to.
Friends of mine chose the latter this week. They scheduled a “Cookies for Cancer” fund raiser, and are donating over $1000 to childhood cancer research. I couldn’t be more proud to call them friends. They said we were their inspiration. I find them pretty inspiring.
October is Breast Cancer Awareness month.
I know very few people unaware of Breast Cancer. As a matter of fact some have become sick of seeing the marketing connected with “Pink Ribbons” everywhere you turn.
Breast cancer is an ugly reality. Mom is still fiesty, many years after her battle. Breast cancer messed with the wrong woman there. And me, well, my scars have healed, and I have found all the benefits to these replacements I have to the “superfluous tissue” that was trying to take my life. I cringe when I think of my daughter, and the foreboding reality that this will be part of her journey.
I choose to empower my daughter with stories of strong powerful women. Those she knows and those she does not. I choose to teach her about early detection, awareness, and victory. Together we are empowered to TALK about our story. The more people who hear about Cowden’s Syndrome, the more people will realize. Lives can be saved. Breasts, well maybe those can’t be saved – but let me tell you about the freedom of being almost 40- perky, and often braless. I’ll bring you over to the bright side.
Meghan’s health has been a struggle since birth. Our treatments for her have evolved over time. Long before we could afford it we took a credit card and a trip to an integrative medicine doctor who is still a huge part of our lives today. We learned that for her, pure, natural, gluten, dairy, and soy free food was as necessary as sneakers and clothing that fit.
Slowly we evolved into a house that ate better. We took what we had learned about Meghan’s needs and transferred them to our own.
Except habits die hard, and in the months following our Cowden’s Syndrome diagnosis, and my mastectomy, and hysterectomy, my husband ate his way through the stress to the unhealthiest I had ever seen him.
Realizing we need him- healthy — all the time. We connected with Isagenix, initially to help him lose weight.
Well he did. Fifty pounds. And its still gone. And then I read and read about the company and things came together for me. I realized everything I had learned that Meghan needed was here, all in this organic superfood. So we bought her some too. And then there was stamina and endurance to complete workouts in the pool. So my husband told me it was my turn. Nutrition, simple, quality.
The first 10 months on Isagenix we told no one. Then we felt guilty NOT telling everyone, about the health we were experiencing, The first year we paid for the products, and sacrificed where we could. Now, Isagnix pays us because we share what we have learned and experienced.
This week Meghan’s pain was bad. So much so that she was finding it difficult to walk on Friday. We are trying desperately to lower her NSAID medication, but her body won’t allow it.
Friday I was discouraged – and inspired. Stuck in the middle I guess. I was so heartbroken for her agony, and so proud of the tenacity to get into the day, and DO IT.
They are tough to make.
We are faced with countless ones each day.
The choices we make are directly connected to the quality of the life we live. Our desire to do the best we can with what we have, where we are – essentially defines WHO we are.
Maybe we aren’t “Stuck” in the middle, but rather placed there gently through grace.
I am almost at the point where I have stopped waiting for the break. I am just about ready to stop wondering when there will be rest. I am almost ready – but not quite.
September as a teacher is a month full of new beginnings. One of the blessings of having a job that begins and ends each year is the “newness” that September brings with it. There is something special about meeting new students, or old friends after a summer vacation. There is something exciting about anxious eyes and new backpacks, and children eager to reconnect with friends.
So as I ran through September for about the 16th time, I took the time to appreciate the wonders and the smiles of the children around me- if only for a few fleeting moments. See, I remember September 16, and 15, and 14 years ago. I remember September when I was still a bit unsure of myself. I remember September before there was a husband, and a house, and a daughter, and 2 dogs, and 2 Cowden’s Syndrome diagnoses, and countless appointments, and surgeries, and medical bills, and paperwork at home to match the paperwork in school. I remember those early Septembers thinking I was overwhelmed. And, like so many things happen in life – looking back now I realize I had no idea.
This week we organized a new car, soon to be picked up. We got an antibiotic for the sore throat full of strep symptoms again. We got a new roof on the house. The new roof prompted a thorough cleaning of the entire second floor, which led to the Halloween decorations coming out a bit too early.
This weekend we packed up all of Meghan’s clothes – and I mean virtually all of them. We gave them to a beautiful family, and started over. She has grown this year several inches, has a foot as big as mine, and we will soon be sharing tops.
This weekend there were lessons to plan, IEPs to read, standards to sort through and a binder to prepare. I love my work, I really do. But the setup, and the stipulations placed on us from places way above us are exhausting in and of themselves.
This weekend there were bills to pay. A giant stack, somewhere in between a pile of mail that needed to be shredded and just to the right and a bit higher than the mountain of laundry in the middle of the basement floor.
This weekend, in between cleaning and sorting, and laundry, and preparing food for the week, there was this headache. A nasty one that just wouldn’t quit. She started complaining Tuesday and it just persisted. And as life continued at its rapid pace, and constant motion, there was Meghan in bed for the better part of Saturday. No swim practice for her, always a gut wrenching decision, her body can not endure this pace of constant motion. And my heart, torn in two, kept a watchful eye on my girl as I continued the whirlwind.
I remember being her when I was younger. I remember watching my mom and sister in constant motion. I remember being sick the morning after a sleepover. I remember just not feeling well. But none of that, not any of it, makes me feel any better when it is my girl, sitting and hurting.
There is worry all around. I am aware of the friends and family struggling with illness of all types. I am aware of their angst and their hurt. And as much as I pray for peace for them, for their loved ones, for their healing I have to honestly say the biggest piece of my heart sits with my beautiful girl.
We help her rest. We feed her the most potent superfoods we can buy…
She is trapped in a schedule with no relief, in a body that sadly lacks stamina, with a syndrome that is angered by overwhelming fatigue. But what to give up? 5th grade promises to be fun, but busy. Then there is physical therapy – twice a week, and swim practice on the schedule 3 times a week. Plus doctors appointments, like the hand surgeon follow up in Manhattan on Thursday…
And while we work on her to keep her anxiety in check, there is always mine to look after. When you have a syndrome that grows tumors, nothing is ever without a high alert. A headache, probably allergies, but what if… The pain in the leg, probably a muscle pain, but what about the AVM… And if she could have an AVM in her knee, and her hand…
Life is about balance.
September is chaos. It just is.
But the nice thing about September is its followed by October.
And while I am not hopeful for huge amounts of downtime anywhere in the foreseeable future, I am confident we will sneak in some pumpkin and apple picking one day in the next few weeks.
And I am learning that while this Cowden’s Syndrome, and all its extra worry is going to linger forever, somehow, some way it seems to make the little moments that much better.
Yep. Finally the taste of victory, and I will savor every single drop. I know all too well these moments don’t come often.
Sandwiched between way too many doctor visits this summer, were a few other pressing problems.
We need a new roof. Well, that one is cut and dried. Pension loan. Money available – job before the winter.
The bay window in the front of the house needs to be replaced. That one, not as easy. Lots of paperwork to participate in a class action lawsuit where apparently lots of these windows have leaked. WAITING, and following up, and WAITING, as the wood shrinks and peels.
And then there was the car.
The car we bought in December after this happened in November.
The slightly, (but not too fancy because who was ready for a car payment?) upgraded car, was the same make and the next model up. It included more space, and XM radio capability, and the ability to have a navigation system in the car if we decided to subscribe.
If you have spent more than 5 minutes with me you know I can barely find my way out of a paper bag.
In the midst of being tired, and sore, and frustrated about the accident, I was THRILLED to have a navigation in the car.
The navigation was also connected to a blue tooth that went right through the car speakers. My phone synced to the car and I could talk without worry.
I was thrilled – when I wan’t frustrated. Or lost. Or left dropping calls, or using my Iphone to take me places.
The car wasn’t working right very early in the game. We ignored the “glitches” for a few months thinking it would get better.
Then in April it made its first trip in for service- only to be declared healthy.
Until it wasn’t.
Then it went back in. This time a new radio.
Nope – that wasn’t it.
And so on and so on and so on and so on.
I drove more rental cars this summer than I ever want to drive in my life.
During one stretch the car spent 11 days in the service station. They said they couldn’t fix it.
They called in the field tech (“Magic Wand Guy.”) He said it was fine.
Nope. Not fine. My Iphone is full of voice memos of me trying to get places. It took us 18 minutes to get started on the trip to the Philadelphia Zoo.
At one point I drove around the neighborhood giving it addresses. It was 2 for 10.
And the sound on the blue tooth just kept getting worse.
I didn’t know much about the Lemon Law, except that it exists. But hidden inside the glove box of my car was a handy book explaining it. It also gave me detailed instructions on how to file a claim (free of charge) to be arbitrated by the Better Business Bureau.
In between trips back and forth to NYC for doctors, I read and I learned, and I first tried a letter to Corporate Office. The deliver confirmation says it was received July 22. I wonder when it hit the shredder?
Next, I opened a case with the Better Business Bureau. They closed it when “Magic Wand Guy” was coming to fix the car. After he declared it fine, and before I even drove it off the property, I tried the system again. Still broken. I reopened the case.
When they ask what we would like to solve the problem my husband said, “Tell them we want a new car.” I was really hesitant. He explained his fears that the problem that no one could seem to fix likely lay deep in the central computer. I trusted him.
It took so many hours to prepare the documents. I wrote a narrative that was over 10 pages. I faxed. I Emailed.
All of this in between dragging ourselves back and forth to the dealer in between doctors.
Today it paid off.
I finally got that call from corporate.
They are replacing the car. No out of pocket cost to us at all. We went tonight to decide on a color. The VIN number has been assigned to us. 7-10 days for the paperwork.
Then I drop off the old car and drive away with the new one.
If you asked me in July if I would ever buy another car from these people again, I likely would have said, HELL NO!
However, with so much time spent together I developed a respect for the Service Manager. And, in the end he was our advocate.
And tonight, while we filled out papers, with no commission to be made, the salesman was kind. He was friendly and patient. He was personable and understanding. He got that WE matter.
We chose black. Time for a color change.
So many things go wrong, so often. Hanging onto the anger will make you sick. And, well – we haven’t got time for that.
Sipping my t+Chai I have peace.
Talking on the phone to my father before he told me a story. The day Meghan had her hand surgery, I had to go drop the car for the (millionth) time. I was stressed about leaving her, and about the whole mess. He told me tonight she said, “I don’t know why Mommy’s so upset. She’ll get this taken care of.”
Tonight when I was so happy she said, “I never doubted you.”
Her confidence. Whatever I did, by whatever grace I have it- I hope to keep it for a long time. It’s quite the compliment.
I don’t keep a win/loss column. It would be too distressing. But tonight – we win. And for tonight, that’s just plenty.
I woke this morning to the sound of my dogs running back and forth through the house. They weren’t barking – just running.
The sound also woke Felix who is quicker in the mornings than I am.
“Weren’t you supposed to be up at 6?”
Gulp. Sure was. And that was my Mom at the door waiting to take Meghan and I to the Race for the Cure in Central Park.
As I quickly washed, my face, and changed my clothes. I let Felix see to Meghan. I was annoyed at myself for oversleeping. I purposely set the alarm on my cell phone so I would have to undo the lock screen to shut it down. Apparently I was THAT tired.
We have been going to this race for at least 15 years. Some of the participants have come and gone, but Mom and I have been there together… well except for 2003 when Meghan was just about a month old.
And, for the better part of the last 10 years Meghan has joined us. She was always so eager to support Grandma, that once I had the title of “Survivor” too she was determined to support us both.
Except last year. When she was sidelined. Sick with a fever early in the school year. As devastated as she was I convinced her this was the year that mattered. This was the year I could say I was a FULL year without my breast cancer.
When Mom was first diagnosed in 1997, I wasn’t sure she would be ok. Although she battled through 2 mastectomies, and chemo, and 5 years of tamoxifen like a champ, it became important to celebrate the victories. The milestones. So Meghan has grown up watching me acknowledge Grandma’s “Pink Ribbon Anniversaries” three times a year. (First surgery, second surgery, end of chemo) And while the acknowledgements are small they are an understanding between us that we remember. We are grateful.
The race every September in Central Park was a natural outgrowth of that. A desire to celebrate. To be thankful. To remember.
Of course for me things feel a bit different sometimes. Last night I told my husband I sometimes feel guilty wearing the pink “Survivor” T shirt. He was perplexed. I explained that I didn’t feel like I “survived” chemo, or radiation, or any of the things most women go through. To which his sassy reply was, “You were tired of the old boobs? That’s why you had them cut off?”
See I wonder sometimes if would have been different if there was no cancer. If the mastectomy had indeed been prophylactic would that change the fact that a genetic predisposition – AKA Cowden’s Syndrome (in ADDITION to having a first degree relative with breast cancer,) had pretty much predetermined the fate of my breasts?
I have “met” in this virtual world, and now in my real life, quite a few “previvors” who have taken an empowered approach to their genetic predisposition and had a mastectomy, and/or a hysterectomy.
I would say they are as much “survivors” as anyone. Bravery, coupled with a desire to be there for your children and your family motivates these women to endure major surgery(ies.)
2. To carry on despite hardships or trauma; persevere: families that were surviving in tents after the flood.
3. To remain functional or usable: I dropped the radio, but it survived.
1. To live longer than; outlive: She survived her husband by five years.
2. To live, persist, or remain usable through: plants that can survive frosts; a clock that survived a fall.
3. To cope with (a trauma or setback); persevere after: survived child abuse.
So I put on my pink shirt, and we got out the door (t+Chai in hand) in just a few minutes. We blew into Manhattan and found a spot on the street close to the park.
We walked through the “Expo” which was a little thinner than most years, took a few pictures, and then it was time to walk.
Although the weather was beautiful, Mom’s pinched nerve is not cooperating the way she would like, so she took a shorter route as Meghan and I headed to the starting line.
For 3,2 miles, I pushed Meghan in her push chair. She made friends along the way. She met a police dog, and lots of nice ladies to whom she gave her “Cowden’s Card.” And every time she gave it out I thought – Cowden’s Syndrome is more rare than BRCA, but just as lethal, even more so in some ways. People should know. I reminded her how glad I was – to have her
Just before the 3 mile mark we were joined by Grandma, and the three of us crossed the finish line together.
And as we walked under the pink balloon arch and turned towards the car I forced from my head the reality that we were now 2/3 pink. I looked at my little girl in her white shirt, about to start 5th grade tomorrow. I prayed for lots and lots of years for her to not have to worry about any of this. I thought about how much better she looks in white than pink. I searched my heart praying for a cure.
And in the depths of my soul I don’t go a day without considering her 85% lifetime breast cancer risk.
Dates are important.
Now March 5, 2012 gets added to our celebration list.
Life is uncertain. Celebrate the little victories together. They are what matters most.
I’m not exactly sure how the idea got into her head. At some point Meghan learned it to be possible to donate your hair to make wigs for people who had no hair. And she decided that she wanted to do it.
For a bit of time it was talk. We spoke about when it would be a good time, if her hair was long enough, and how it would feel to lose so much hair. Then she got serious.
Sometime right after school ended she decided it was time. So, we went to a new hair salon and had her hair measured.
“Close,” they said. “Come back in about 2 months.”
And, as summers go, time passes and 2 months is gone. We made the appointment for today so she would have time to “adjust” to the new hair if she wasn’t happy.
She was anxious but determined. Confident that it was the right thing to do – she bravely sat in the chair. Her hair was measured to ensure it reached the necessary 10 inches.
Then, even I held my breath as the pony tail was cut off.
And as the hair fell down, the smile of relief sprang up. She saw the life bounce into her hair. She knew it would all be OK.
As she looked at her new cut, and adjusted to the reality that she had just done something HUGE for someone in need, I couldn’t help be overwhelmed with pride.
Once again, my girl led me by example. Once again her bravery is unmatched.
You see last Friday we found a small bald spot on the top of her head.
Yesterday Meghan got the formal diagnosis of “Alopecia Areata.” It hasn’t got a blessed thing to do with Cowden’s Syndrome. Although being affected BY Cowden’s Syndrome has made us all more aware of the needs of others who suffer. The denim ribbon we wear each day is a reminder of the Global Genes Project, and a search for cures, or at least awareness of ALL rare diseases.
Stress can trigger this unpredictable autoimmune hair loss.
We can hope the spot was a reality check for all of us. A reminder to try to take some deep breaths along the bumpy road we travel.
We kept it from Meghan for the weekend, but as we headed to the dermatologist Tuesday the conversation had to happen. We go through too much here not to have each other’s trust. I answer questions as briefly as she allows, but I always answer honestly.
There is no way to know what path it will take, if this will (hopefully) be the end, or the beginning. Alopecia Areata is a life-long condition. It may stop now and rest forever. Or maybe it won’t. We just don’t know.
But we are kind of used to that around here. There are no “plans” anymore. Only guesses, and hopes, and prayers.
And thankfully we live with the confidence that there is a greater plan than any of us can wrap our heads around.
For now, some beautiful little girl will soon receive a wig made in part by Meghan’s beautiful, curly hair.