And in her never-ending quest to keep Cowden’s Syndrome firmly in its place, my girl blew me away yet again.
I am just along for the ride.
She looks like me. She and I share a broken PTEN gene, and all the ramifications. She inherited my tendency to grow things, and perhaps her body is even playing harder with her.
We are roughly the same size. We have curly hair. We share some clothes. She and I are both stubborn, sometimes to our benefit and sometimes to our detriment. We are strong-minded and strong-willed.
And that is probably where the comparisons stop.
Yesterday after a full day of school, she fit in a PT session, 2 hours at after school drama, a good run at her abbreviated swim practice schedule (for the second day in a row,) and came home to complete some lingering homework.
Tonight, her father and I took her to the school’s chorus/drama performance. It was hot. It was long. It was so worth it.
The kids have amazing talent. I guess what I didn’t really get until tonight is that mine fits right in.
After a skit on Helen Keller, where she played Annie Sullivan, she stood with several 6th-8th graders and they each sang acapella, an excerpt from a Broadway show tune.
Meghan had never heard of “Fiddler on the Roof.” She downloaded the song she was told to learn. She practiced. I fought back tears of pride and joy.
I told her drama teacher I had no idea she had that in her. The teacher told me to “wait and see what we bring out of her in the next 2 years.”
What a gift. Two happy places. The stage AND the pool. BAM!
My daughter is a reader. She eats books up. One after another. I have pleaded with her to use the kindle, just to avoid the sheer volume of books in the house. I lack the responsibility to be a good library patron, as my brain can’t remember even one more thing. So the books build up. There are gift cards, and sales. And I never say no to a book. Ever.
Her early childhood teachers nourished a love, no a passion for reading. They gave her the skills to decode, to comprehend, and to find her genre of choice, and her escape. She has needed that escape so often through the years that I find myself grateful for how easily the reading comes to her, and forever grateful to those precious teachers who likely have no idea how deeply they have impacted our existence.
This was a weekend full of homework. It was a culmination of a month that began with being pulled from class for play practice, and continued through her surgery on May 6th, and seven days absent. There are 4 honors classes to maintain, and for a perfectionist at heart, striving to get it all done has been nothing short of horrendous. All the classwork, all the homework, all the projects, every last bit of it to be made up.
And I understand, to some degree, why nothing was forgiven. Why she had to do it all. I have sat in the seat of the teacher for 19 years and the reality is absent or not, sick or not, they are responsible for the curriculum. That didn’t stop me from questioning the VOLUME of work and how it differed drastically from unbelievable to totally reasonable. And it didn’t stop the stress and bitterness of the last few weeks from taking a toll on both of us.
I hate having to be the “heavy” all the time. But, I was the one who had to put the books in her hand days post-op. Still working the anesthesia and narcotic pain relievers out of her system, it was time to get started. Knee elevated and iced, we talked through one subject after another.
Normally she manages all her schoolwork alone, and does it quite well at that, but this month I needed to stay with her. Make sure all the pieces were getting put back in place. Junior high is a step closer to the “real world” I guess, and while there was some awareness of her absence, life marched right on.
She hopped in and tried to catch up at school. She spent the entire week there, despite my knowing by Friday she probably should have been home. Friday night the fears were confirmed, as the classic sore throat began. Honey syrup lasted through the night until the pediatrician was able to declare an ear infection, and likely strep throat. She was cultured. The script was filled, and even as she took dose number one, the books were open.
She worked in my office this weekend, so I could oversee. Laptops side by side. Lots of togetherness. But, one subject at a time, it got done. The notes were put into notebooks, packets were completed, homeworks were stapled together. A science book was created and a newspaper for English class too.
And slowly as the last staple went into the last assignment, a smile crept over the corners of her lips. Her throat felt just so much better, and there was this notion that the weight of the world had been lifted from her shoulders. There may be more to do this week. The year is not over quite yet. But finally, she is all caught up.
So she retreated to her favorite spot on the couch today, alternating between reading, and watching a series on Netflix. She brought me her book, “Gathering Blue” by Lois Lowry. “Hey Mom, listen to this…“Take pride in your pain,” her mother had always told her, “You are stronger than those who have none.”
She offered me a free hug and a smile. Then she was gone, back to her day of much-needed peace, healing and rest.
But, the depth of her quote resonated with me. Not only in amazement that she is able to extract such meaning from the context she reads, but also in the context of today, Memorial Day 2015.
When I started writing this blog it was all about therapy for me. It was all about our journey, and what we were going through. And still, so much of my day, so much of our lives, are consumed by Cowden’s Syndrome, its ravages and its effects, that leaving it out of my writing would be impossible. For while it does not, nor will it ever, own us, or rule us, it had shaped us as we grow through this disease together.
Along this journey we have learned so many lessons. We have learned to have a keener eye to the suffering of others. We have embraced the reality that “everyone has something,” and we have a deep appreciation for the many blessings we have.
I spoke several times today with one of my Dad’s Marines, “Uncle Alan.” I learned about lowering the flag to half mast till noon to remember the fallen, and then raising it to honor the living. I learned about some more Marines, and for a short time I was able to provide an ear for someone whose grief on Memorial Day bears more than general images, but actual names and faces. He speaks with such grace, such poise, and such a deep connection to his “brothers.” I can not help but admire him, even as we have yet to meet.
I put together this picture last night. All four of the veterans I love so dearly, only one of whom is still with us here on earth. My Pop, pictured with my Grandma, almost 70 years ago in the top left. At 95 his wit, compassion, faith, and humor still inspire me.
I took some long walks today. I had a few long talks, with God, and with my Dad, and some others gone too soon. I embraced the beauty around me. I gathered my inner strength to handle whatever life has waiting in the wings.
“Take pride in your pain. You are stronger than those who have none.”
“Standing in the middle of nowhere, Wondering how to begin. Lost between tomorrow and yesterday, Between now and then.And now we’re back where we started, Here we go round again. Day after day I get up and I say I better do it again…”
The chorus to the old song rings through my head, as we prepare to return to work and school. Eight days post-op and everything checked out just fine at the surgeon. It’s ok to return to school, as long as she limits stairs, reduces the weight she carries, and generally takes it easy. The surgery went well. The recovery is moving along. But, as with each time we’ve done this, there are no promises. There are some cautious words. There are some hopeful words. This is what I have to focus on. And I will.
But, sometimes it can be hard.
Like when you do research and turn up this page from an orthopedic clinic. (Rosenberg Cooley Metcalf) and you do OK until you get to the bottom where it says “Recovery.”
Knee
Primary Inflammatory (Synovial) Disease of the Knee
Diagnosis
Your diagnosis is a primary inflammatory condition involving the lining (synovial tissue) of your knee joint.
Injury or Condition
This condition represents a primary inflammatory disease developing within the velvety lining (synovium) of the knee. In response to inflammation, the lining tissue can thicken and hypertrophy dramatically which may lead to chronic swelling.
Cause
The cause is often unknown. Some inflammatory diseases of the knee lining involve only the knee joint (PVNS). Other diseases like Rheumatoid Arthritis can affect multiple joints.
Symptoms
Typical symptoms are moderate to severe generalized swelling and pain about the knee. Marked swelling can be associated with stiffness usually in bending the knee. Increased warmth is felt about the knee in some cases.
Treatment
Standard treatment includes:
Anti-inflammatory medication for six months.
Safe exercises to improve strength without aggravating swelling.
Ice, warm packs and knee balms can be used to decrease pain.
Swelling can sometimes be reduced by application of elastic stockings and/or sleeves around the knee.
Diagnostically, joint swelling aspiration and MRI can provide information, although it may not change the treatment.
If non-surgical treatment fails, arthroscopic surgery to remove the diseased tissue (synovectomy) should be performed to limit or cure the disease.
Precautions
Important precautions:
Do not aggravate swelling and warmth about your knee. Increased warmth and swelling may weaken your thigh muscles and may raise the risk of destructive changes within your knee.
Do not ignore or neglect your condition. Follow recommendations and do not miss important follow-up visits.
When arthroscopic synovectomy is necessary, elevate your limb very well for 48 hours and initiate full weight-bearing within the first 3 days of surgery.
Avoid stress.
Recovery
As the cause is unknown in many cases, the recovery can be uncertain. Two-thirds of cases generally recover completely. Full recovery after arthroscopic surgery usually takes 3-6 months.
“Two – thirds of cases generally recover completely.” The math teacher in me is unhappy with those numbers. The mother, the mother of this child, knows that she defies statistics whether they are for or against her. She is her own special case.
Meghan spent the week on the couch, making up what seemed to be an astronomical amount of schoolwork. Maybe it was a good distraction. After surgery 13, the novelty of the whole thing has worn off. Days are long. Recovery is mundane. People are busy. Texting helps a bit, but the hours drag.
We got to PT this week, twice. And already I see progress. That’s why quality therapy is worth every minute.
So during my days home I did laundry, and caught up on some household things while I stayed close to my girl. I also attacked “the pile.”
There is a spot on my desk where all the bills, letters, invitations, flyers, and pretty much everything else goes. I try to get to it every few days. But mostly I don’t. Then it overwhelms the table. And somewhere under the pile is “the list.” The upcoming appointments line the top. Then there are the appointments I need to make, and the bills to be addressed that for some reason are not in “the pile.” Today was a good day to tackle it. I made some significant progress.
I also spent hours on the phone. I dredged up the anesthesia bill from my surgery in February. That took an hour. But, it’s done for now.
I started scheduling appointments. We tend to cluster a lot the first two weeks of the summer. Some have been planned for months. Some I’ve been blocking. I got a few more in. Then I got stuck.
In the hospital the pediatrician last week was really on my case. She wanted to know who was “in charge” of Meghan’s appointments, check ups and surveillance. She didn’t like that I said, “ME!” (Maybe it was the way I said it… (grin)) But, truth be told, I really don’t like it either.
I had to tell the endocrinologist that 12 weeks was too long to wait to repeat ANOTHER irregular lab finding last week.
Meghan’s blood pressure in the hospital was low. Like at times crazy, scary low. I know she was just cleared by a cardiologist, but…
And the lesion on her hand dubbed “vascular” by the dermatologist…. What to do with that? The same dermatologist who promised the moon and the stars and the sky in November as I prepared HOURS worth of Meghan’s medical records for her. The same doctor who said she’d help us. That one. Yep, she’s useless at this point too.
I was on the phone today pleading with the receptionist of one of my doctors to let Meghan come in as well. Apparently the fact that she’s “adult size,” doesn’t matter. I was left so frustrated I choked on a few tears.
This Syndrome is big. I can manage it. I can and I will, because there is no other choice. But, I need some help. I need a point person. Someone to force the doctors to listen. Someone to gather it all into one place and make sure it makes sense. Someone to make sure we don’t miss anything.
In desperation I emailed the genetecist who diagnosed us. He responded within an hour.
Dear Mrs. Ortega,
I am sorry I said no need to return. I have been overwhelmed with patients but this is no excuse. I will find out the referrals needed for Meghan and we will together make a surveillance plan. And we will meet so we will document the whole process.
I feel that I am the least helpful of all the physicians because I do not provide treatments. However, I will gladly assume the role of coordinator of care for you and Meghan.
Sincerely,
(The angel I need… I hope)
I will call tomorrow to make an appointment. I have a good feeling about this one. Please, whatever your faith, send some prayers. This would be huge. Really huge, in a life-changing good way. We are three years in and due for an overwhelming cycle of tests again I’m sure – but I know it gets easier.
I just want to keep her safe. I want to use every tool God has given me to keep her as safe as I possibly can, so we remain BEATINGCOWDENS together.
“…Where are all the people going? Round and round till we reach the end. One day leading to another, Get up, go out, do it again.
Then it’s back where you started, Here we go round again. Back where you started, Come on do it again…”
Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain. I’ve said this before, and I will say again, it is a blessing and a curse. It is a good thing to celebrate accomplishments, and the anniversaries of such things. It is dangerous territory to recall to be caught up in the negative aspects of any day. By doing so you give it power. And, if you are not careful you give it power over you.
It is a dangerous road to walk. I have done many miles on it. And my brain does not differentiate the “good” dates and the “bad” ones. I remember them all. The problem is, some fill my heart with gratitude and joy, while others seem to provoke anxiety unceasing – warranted or not.
I have never been a fan of “Hallmark” holidays. Valentine’s Day, even after I found the love of my life, has never held any appeal. Mother’s Day and Father’s Day don’t do much for me either. Before you jump on me for not loving my parents, I want to share part of an interesting article I read on the history of Mother’s Day.
From: Mother’s Day Turns 100: Its Surprisingly Dark History
“For Jarvis it was a day where you’d go home to spend time with your mother and thank her for all that she did,” West Virginia Wesleyan’s Antolini, who wrote “Memorializing Motherhood: Anna Jarvis and the Defense of Her Mother’s Day” as her Ph.D. dissertation, said in a previous interview.
“It wasn’t to celebrate all mothers. It was to celebrate the best mother you’ve ever known—your mother—as a son or a daughter.” That’s why Jarvis stressed the singular “Mother’s Day,” rather than the plural “Mothers’ Day,” Antolini explained.
But Jarvis’s success soon turned to failure, at least in her own eyes.
Even Anna Jarvis did not intend the holiday as it has become.
I have epic amounts to be grateful for. And I am. Every day. I think that’s why the pressure of having it all jammed into one day confuses me and stresses me out a bit.
In church we were taught, “Honor thy father and thy mother…” I believe the meaning was every day.
So yesterday I needed to do some soul-searching. And I think I figured a lot out.
I have a tough as nails mother. She is the strongest woman I know. Not a day of my life goes by that I am not grateful to her, and for her. And I try not to let too many days go by without telling her so. Life has taught some tough lessons, and sent some reminders about how fleeting it can be.
One of the many lessons I learned from Mom
I have two grandmothers on this earth. One I had the privilege to grow up with, and even though the recent years have been cruel to her memory, my memories of her, and of her love, penetrate my soul.
I have another grandmother, a gift to me 27 years ago, who inherited me as a teenager and allowed herself to love me. I am so grateful for that love.
And my grandmother Gen who left for heaven in October, whose smile I can see, and whose laughter I can hear… her memory warms my heart.
I am so very thankful I did not wait to acknowledge them only once a year.
My girl is recovering from surgery. On my couch. In pain. Feisty. Looking to move. Bored. There would be no grand family celebrations yesterday. My husband was fixing our deck that is literally falling apart. A labor of love – and safety. I stopped in for a quick visit to Mom and one Grandma.
I reflected about Mother’s Day a year ago. Spent in the pediatric unit at RUMC. Scared out of my mind. Not knowing what we were up against.
Then I thought about Mother’s Day 2008. A few days after the tonsils and adenoids came out.
Or Mother’s Day 2012, as I awaited my hysterectomy, a few weeks after my double mastectomy.
Then I thought about my friends. The ones who have lost their moms way too early.
And the others, whose hearts yearn to be a mother, or those who ache to have larger families than they do.
My heart aches for those who have lived through the unthinkable, and have lost their own children.
Why so much pressure put on one day?
Wouldn’t it just be easier if we celebrated our Moms every day? Instead of waiting for one day?
I know I may have an unpopular idea here, but so many unconventional things work for us.
I would never claim our lives to be “harder” or “easier” than anyone else’s. I’m not that kind of fool. But I will dare to say that maybe raising a chronically ill child makes it “different.” Maybe facing life with two rare genetic diseases in the family makes me think of things in a slightly unorthodox way.
I stick a note in my 6th grader’s lunch just about every day. And I will until she tells me to stop. I will remind her in as many ways as I can, of my love for her every day.
Life is scary. Our lives are scary. Wednesday some machines, and a very smart doctor breathed for her, for over 2 hours. This is not a rare occurrence. This is something that goes on regularly, for one of us. But, they told me she was, “stable and strong,” and in those words were the best gift I could ask for.
Mother’s Day is every day. From mother to child, and child to mother, and aunt to niece and grandparent to grandchild. Not in the, “buy me lavish gifts or send me to the spa” sense. But, in the, “I’m really lucky to have you. Right now. Today. and thanks. For that thing you do. For that smile. For that hug. For calling me. For calling me out. For driving me to the store. To school. To practice. For driving me insane. For making a mess. For sometimes cleaning it up. For sitting by my hospital bed. For getting me ginger ale. For helping me walk. For making me laugh. For never giving up on me. For understanding I won’t be here forever. For being my cheerleader. For supporting me. For listening to me. For shutting up. For saying just the right thing. For explaining the math. For butterfly kisses.”
Mother’s Day in our house may be low on pomp and circumstance, but it’s high on all things that matter. Right now we’re nursing a recovery. And it’s coming along, thank you very much. We are incredibly proficient at this.
And as Mother’s Day 2015 drew to a close, and as we ate our gluten-free pancakes for dinner together, I was struck with the thought that I would not have it any other way.
People count all sorts of things. Among the things we count are surgeries.
Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in. And we don’t even try to talk about them without the three page cheat sheet detailing the most pressing medical information. We don’t talk to over zealous residents without the 32 gig flash drive pulling up PDFs of old blood work and reports. (Saved her another stick today when I could produce a recent normal liver enzyme panel!)
So today, surgery number 13, was not a surprise. It was anticipated and planned very deliberately for months on end.
The day started before 5, scheduled for a 6 AM arrival. But, in reality it started last night. Bags were packed to include clothes, toiletries, snacks, electronics, chargers, and our shakes too.
We got up and out quickly. No fanfare. No time for a “selfie” of the three of us in our “Never Give Up” T-shirts. We checked in just past 6 and shortly after were performing all the typical surgery routines.
It is funny. There are two groups of people in my life- those who have similar numbers of surgeries to us, and the larger group – those who have had next to no surgeries. The first group understands surgery “routines.” The second group raises some eyebrows. They are horrified at our use of the camera in the hospital. But this is our reality, and I can pack for surgery as well as I can pack a carry on for vacation.
We were greeted in pre-op by about a half dozen people all asking exactly the same questions (even though they and I had the cheat sheet, we still had to play the question/ answer game.) Several consent slips were tossed at me. The anesthesiologist and Meghan made a deal involving the timing of the IV and the mask. Felix was given the necessary garb to walk into the OR. I stole a few extra minutes to clarify the plan with the orthopedist.
And I must confess there was some major anxiety. See, the plan as I saw it was for her to have the AVM embolized while the orthopedist cleaned out and searched for the elusive “leak” in the artery. That’s why we coordinated surgery times. Except, as it was presented to me today – the vascular guy wasn’t touching the AVM unless it was absolutely necessary. This was a far cry from the report after the MRI in January when we were told another embolization was necessary. But, it was now in the moment. They had a plan and I had to play along. The orthopedist promised me the vascular guy would be there while he poked around at the beginning in case he was necessary. He also promised me he would do his best. What more was there to ask, I guess.
In the waiting room I thought. Too much. But, when I was just about insane with my thoughts, I let them wander to Ashton and Suzannah, and the number of hours involved in EACH of those procedures, and I tried to feel better.
After about three hours we were greeted by the orthopedist. His words were varied, but included “not as bad as I expected,” “quarterized several spots that were leaking blood,” and, “cleaned out a good deal of scar tissue and debris.” He gave us some pictures to see his work, and left us to meet up with Meghan in recovery.
She woke up slowly, but well, and soon she was alert. While she spoke to her dad I fielded detailed questions from several more people who held the cheat sheet. I took out my copy and obliged them with answers. She woke in the most terrible kind of pain, curtailed by a dose of morphine and some ice. Lots of ice. For Meghan. And for me- as I managed to bang my head on the table. Insert exhaustion here.
The pediatrician on call was relentless reviewing the three sheet medical history. Eventually we got our room, and some time around 2 we were greeted by friendly nurses, a nice bed, and some more pain meds.
Things were settling a bit until the “Inquisition” took place in the form of that previously mentioned pediatrician. I have to tell you she succeeded on really aggravating my last nerve. She actually handed me her copy of the “sheet” which had been copied to just about every department so she could ask me the same questions. By now the fatigue was starting to set in. I resented the implications that it was somehow my fault no one was “running” my daughter’s medical care but me. I explained carefully that I was jaded by years of dealing with sub par medical professionals. She did not take the hint and proceeded to contact my pediatrician to tell him she disagreed with one of Meghan’s medications. Whatever… Truly. Spend some time learning about Cowden’s or ANY Rare Disease. Then we’ll talk.
Arrogant self- importance. Ugh.
We were called down to radiology at 2:30 so the feet could be X-rayed. The orthopedist believes, acknowledges, and is searching for an answer on the foot size discrepancy. Results tomorrow. In the mean time his caring makes him my current favorite.
Pain medications in place. Crutches safely in the corner. Lights are off. Movie is on. And the day is just about over.
Tomorrow we SHOULD be home.
For now, number 13 is in the books.
And my happiest news of the day came when the anesthesiologist said
I went to college, and graduate school, and took 30 credits above my Master’s Degree in Education. I earned a job as an elementary school teacher, in the school I attended as a child. And, after 18 years on the job I still love those moments when I am alone with my students, and things just “click.” But, nothing happens by accident. And despite the belief that a teacher’s day ends at 3PM, many a long night has been spent with those very students in mind, planning lessons, and creatively trying to reach them where they need to be met. I am not always successful in my execution, but I am confident in my planning and preparedness.
Because, you see that is what I was always told a professional is, and does. You LIVE your “job.” You are still the teacher, in the mall, in the restaurant, or even in CVS.
As a professional educator, I take pride in TRYING to meet the needs of my students at their level. It is my responsibility to help every child, not just the easy ones.
But, lately I am wondering if every professional has that same feeling.
Now, I mean no offense to the various healthcare professionals who go above and beyond for us, and for their other patients.
It’s just, well, the rest of them.
Having Cowden’s Syndrome sometimes feels like, well like I would imagine it might feel to have a plague, or leprosy. People, doctors, whomever, look at you tentatively. They look with caution. They don’t want to get too close. They are afraid to treat what they don’t understand.
And worse – no one wants to be in charge.
We are the worst kind of liability – more dangerous than a safe full of cash or a rare artifact.
Everyone wants to see us, all the time. But, they just seem to want to check boxes that say they’ve met their “I’ve seen a Rare Disease” quota, and send us on our way.
I am the CEO of my daughter’s medical care, and while frighteningly competent to do the job, NO ONE is listening to me.
To My Daughter’s Entire Medical Team:
You are dropping the ball here. Someone step up and take charge. Talk to each other. Get your egos out-of-the-way. LISTEN to me. LISTEN to her. Put her picture on her chart to remind you she is a REAL person.
She is charming and beautiful.
Believe her when she says it hurts. Even when it is not “supposed” to. Validate her.
And sometimes. as unpleasant as it is to see, there is a lot of very real pain.
She talks a lot when she’s nervous. Care about what she has to say. Care that she is nervous. Learn about her love of swimming and reading and performing. Adapt your plan, your day, your treatment to fit MY child, just as I would do to yours in my classroom. Treat her as a whole person.
We are tired of spending hours in the car, missing practices and play, and relaxing time, just for you to feed us a line of “maybe,” “watch that,” and “come back.” We are tired of going places where no one wants to give us answers, or even answer our calls.
We are tired of surgery. But we do it. Over and over.
It’s a real person enduring those procedures.
Call back when I have questions. Like within 24 hours. Because I carry my phone until it leaves an imprint in my hand when I wait for you. Nothing else gets my concentration while I wait for the ring. I carry my list for fear of missing that precious window with you.
Oh, and by the way, the foot with the AVM had stopped growing. Take a look. Someone. Please. It’s a bit disconcerting.
She’s hot. Often. And at odd times. And I’m not just talking a little uncomfortable. Anyone want to help address that one?
And yesterday the dermatologist said it’s a vascular malformation in her hand. Another one. Please don’t tell me it’s not all connected. I’d rather you tell me you don’t know.
Don’t ignore her symptoms because you don’t understand them or can’t explain them. Trust me when I tell you, she’s not making it up. Any of it. She spends her time trying to make the world better for other people. Isn’t it about time you all got it together and started making HER world better?
And when the knee is at its worst, there is still a way to press on.
The pain in the knee is constant. Yep, I know it “shouldn’t” hurt either. But, she doesn’t even ask for medication anymore for fear of the same issues her last pain medicine caused in her GI tract. She just endures. All day. And then she goes to drama, and then she swims, and manages an average of 97% and the National Honor Society. She limps a bit by the end of the day. It’s the mornings that are the toughest.
To you she is one of many. To me she is my one and only. And this child, young lady, has the capability to effect great, positive change in this world. I know you are tired. I know your schedule is busy. I know research takes time. Start by listening to us. Listen. Care. Let her know she matters.
Then maybe, just maybe, she’ll start to trust you. Then, slowly, together, you can try to make her life more comfortable. Because, with or without you, she and I are BEATINGCOWDENS together.
Some time in the middle of this winter that lasted forever, I started to notice people complaining about a sidewalk near my school that was often left icy and uncleared. The grumbling that would take place was sometimes quite extensive, and I admit to spending a day or two doing some internal grumbling myself. Then I decided to cross the street. It was a simple idea. Just because I had ALWAYS walked on that side of the street, didn’t make the other side a worse choice, nor was it inconvenient. It was just different.
Soon after I decided to cross the street I found I was less cross myself in the mornings, most of which were rushed and hurried, navigating snow and ice covered streets and looking for parking safe for my very low Sonata. One day I even found myself talking to one of the neighbors near the icy house. She volunteered to me that the elderly couple was not well, and while neighbors did their best to keep up, it wasn’t always possible. Made sense. My grandparents are in their mid 90s and live in their own home. They have kind neighbors who often clear their walkway before family can reach their home. But, what if they didn’t. And what if we didn’t live close? It’s easy to judge. I’m guilty too. But I’m working on a simple move, we’ve come to call – “Flip it!”
We talk “Flip it!” when it’s something that can be fixed. When it’s a negative thought that can be changed.
I’m not suggesting the world go all “Ms. Mary Sunshine” all the time. As a matter of fact the person who always flippantly replies,”Could be worse,” to EVERY situation, often drives me mad. Sometimes things just stink. Sometimes they are even worse. But, for most of us, for the day to day stuff, if we just grab a different perspective, things change quickly and significantly.
I think all this came to mind tonight as I sit, preparing to return to work after Spring Vacation.
This was not a fabulous vacation, but yet nothing awful happened. We cleaned lots of things. We saw a few doctors. I made some phone calls. We got through some necessary spring shopping for my girl who managed to outgrow her entire wardrobe again. Yet, I have this feeling in my stomach, this queasy Sunday night anxiety, that reminds me no matter how much I like my job, I’d rather be home with my girl. Even in this “preteen” phase of our lives, she makes pretty good company.
So, as I started to get down, I was reminded of a dear friend, buried under more than her share of worries, who called to tell me she was being laid off. By no fault of her own, I might add, and I was jolted by the reality that the job market isn’t as good as those of us in pretty secure jobs like to think. It made me think that going to work tomorrow, in a building where I am comfortable, with staff and students that are generally nice to be around, and where I will get paid via direct deposit on the 1st and the 16th is a privilege. The alarm will hurt a little. But I will, “flip it.”
Shopping wasn’t easy. There are shoe challenges for this beautiful girl whose feet are each growing at their own pace. But, we found what we needed, even when I had to buy two pairs and toss one of each a few times. There is a dress for Arista, and a dress for the swim dinner, and one for her grandfather’s 80th birthday. There is a beautiful young lady. So while the shopping pricey, that job security was a comfort. When shopping for shoes was terribly frustrating, like a kid in a candy store who can’t eat anything she wants, we remained grateful. In the most basic forms of gratitude, she has her mobility, she has immense upper body strength to compensate for a weak knee. We have the means to keep her dressed as she needs. Can’t always have what you want – but, rather what you need. “Flip it.”
We didn’t make church as a family of three today. Meghan didn’t leave her bed till after 1, even with the blinds wide open and the bright sunny day on her face. The fatigue was too much. The thyroid hormones still unbalanced. The exhaustion from just being “normal” is too intense sometimes. But I got there. To celebrate our pastor. To worship in a room full of kind souls. To watch a baptism, and to pray. I was alone, but yet I was reminded that I am never alone. “Flip it.”
On April 20th we will make an unscheduled stop to the dermatologist. There is a suspicious mark on Meghan’s side. While no one is panicked, living with Cowden’s Syndrome, and our obscenely high cancer risks, make everything all the more unsettling. We will get it checked, and hopefully it will become quickly a memory. But, we won’t wait. Cowden’s Syndrome is a burden. There is never a break from screenings and testing, and checking. But, we get to strike first. And no matter how overwhelming this battle becomes some days, I am always close in heart with my loved ones who have battled cancer, and those who are battling it now. Our screening and preventative medicine while cumbersome is a gift. “Flip it.”
My heart and my head are full all the time. Sometimes I can keep it in check, and other times I need to remind even myself to find way to “Flip it.”
In every house, on every street, in every city, in every state, in every country in the world, EVERYONE HAS SOMETHING. It is our awareness of others, our ability to see things from another perspective, to know when to make others laugh, and when to hold their hand, to know we are not alone in our struggles. That is how we define where our life will go, and the mark we will leave on the world.
It’s not unusual at all that a classic Beatles song would show up on a classic rock station in the car. And I could write it off as mere coincidence. But, there was my Dad this afternoon. In the car, with the sun shining. Reminding me…
“Here Comes The Sun”
Here comes the sun, here comes the sun And I say it’s all rightLittle darling, it’s been a long cold lonely winter Little darling, it feels like years since it’s been here
Here comes the sun, here comes the sun And I say it’s all right
Little darling, the smiles returning to the faces Little darling, it seems like years since it’s been here
Here comes the sun, here comes the sun And I say it’s all right
Sun, sun, sun, here it comes Sun, sun, sun, here it comes Sun, sun, sun, here it comes Sun, sun, sun, here it comes Sun, sun, sun, here it comes
Little darling, I feel that ice is slowly melting Little darling, it seems like years since it’s been clear
Here comes the sun, here comes the sun And I say it’s all right Here comes the sun, here comes the sun It’s all right, it’s all right
Dad never worried much. And that had its down sides – I’m not going to lie. But there was this calm about him that I was able to appreciate more as an adult. I would call him all spun around, and somehow without belittling what I was worried about, he was able to help me take a few deep breaths.
Our problems here are real. They are ever-present. They can captivate, and get a downright choke-hold if we let them. The worries are real. The concerns about the future. About mobility. The concerns about the present. About pain. About fatigue. About swelling. And looming surgery. The long-term effects of an AVM that seems to be affecting foot size, knocking a growing girl off-sides. The concerns about the uncertain make it hard sometimes for me to find the sun.
There are normal “issues” too. Ones we don’t write too much about here. Bumps in the preteen world. Learning as we go. Along together. Grateful for what, and who, we have to work with in this house.
Yesterday it was dark. Really, really dark. My gut drew me to the cemetery, where I hadn’t been for a while due to the snow. And as I walked up the hill I saw the white piece of granite. I think I knew it was going to be there. And simultaneously I was glad and sad I was alone. I cried like I haven’t cried in quite some time. There is something about the reality of loss etched in stone. The permanence strikes in a whole new way – and its like being kicked in the teeth all over again.
There’s a certain finality of reality etched in stone…
I sat in the car too shaken to drive. And I called my husband, and then I called Alan. Alan is one of Dad’s Marines who has stepped into my life in such a huge way over the past year. We have yet to meet, but we have spent hours on the phone. He has laughed and cried with me. He has told me stories of things, and people I needed to know. He sent me a book a few months ago called “90 Minutes in Heaven” and simply wrote, “Read this.” I haven’t read a book in quite some time, but I did as I was told… and I was so grateful. My Dad merited a Purple Heart during his service in Vietnam, but technicalities being as they are, it won’t be awarded. Alan’s efforts on Dad’s behalf over this last year and a half were Herculean. Marines never leave a brother behind. So, as I viewed the government issued headstone, without the Purple Heart I had envisioned, and fought for, it stung a little extra. But just when I was about to crumble these two birds flew in low and close. There was a peace about them as they flew past into the park. I understood. It’s about way more than the awards. It’s about the love. And the peace. And the lessons learned. And the heart and eyes open for growth. And “Uncle” Alan made me text him when I got home. Another testament to his love for his “brother” extending right to me.
This morning we all made it to church. It hasn’t been an easy feat these last few months. We three entered Castleton Hill Moravian, and I was struck by the sense of warm familiarity. Next Sunday, Easter Sunday, will mark two years of membership for us. Never did I expect to leave my home church. Never will I quite get over that loss. But, I am amazed, impressed, and inspired by the way my husband and daughter have become motivated members of our new church. Gratitude. Palm Sunday, a day of ‘Hosanna’ and celebration, foreshadowing the lowest days, leading us to Easter Sunday next week, and the promise of the Resurrection.
The winter was too much. In so many more ways than the relentless weather. The worry. The heavy hearts. I missed Valentine’s Day, and St. Patrick’s Day, and never took the eggs out for Easter. I didn’t realize how very much I needed the sun- literally and figuratively.
Today Meghan swam. Another CYO meet. She blew my mind. Again. I can not for the life of me get over her stamina in the water. It’s her “happy place” and she’s most terrified of her upcoming surgery because of the time she will need to be away from the pool.
Her team loses every meet. But the friendships they form, and the positive attitude can not be traded for high scores. She became a swimmer because this team took her in when she had never swam competitively.
The 25 fly… (red cap)
The first leg of the freestyle relay.
We had friends spontaneously show up to cheer her on today. Perhaps they sensed the lowest lows… We spoke of summer, and gathering in the yard – just because.
We drove home with the sun warming the car. The temperature read 50 degrees on the dash-board.
This week we will wait for the results of the blood drawn Saturday. This week will be just 4 days as Easter Vacation approaches.
To some people the idea of celebrating a “cancerversary,” or the anniversary of the day you became a “survivor,” is silly. But, to someone who is date obsessed, it makes sense to celebrate the victory. It’s not about remembering the bad. It’s all about celebrating the good. The reality of the here and now.
This morning my daughter handed me this letter – typed from her computer by her own hand. I am sharing it – as it was written – with her permission.
Dear Mom,
I love you with to infinity and back. You are the best mom I could ever ask for and I am so glad that you found the breast cancer early. I could never imagine a life without you. You have always stood by my side, and protected me. Even when I say, or do some stuff, I hope you know that that does not change what I feel towards you. Love. Compassion. You have been my guardian angel in small ways and big. You make sure my shoes don’t get eaten!, you hold me tight and talk me through tough nights, and you are always there for me when I am in pain. When I am in the hospital you are there when I can’t walk, when I cry out in pain, and when too many thoughts come rushing into my head. You have this unique ability to just make people smile, and you are the most pure-hearted person I know. You do for others, even though often you never get a thank you, or some king of acknowledgment. You are kind to a fault. Mom, you have made such a big impact on my life, I would not be me without you. You know what, if I kept going on, it’d be the year 3001! Anyway, back to the point. I love you more than you could know, and I am so grateful to have you as my mom.
I love you mom,
my guardian angel
Meghan
Really? What more could I want? Except for a LOT more “cancerversaries” to watch her grow up and change the world…
It was about 4 in the morning on March 5, 2012. I was laying on the bathroom floor, vomiting the contents of my “nothing to eat or drink after midnight” stomach. I was dizzy, lightheaded and weak. The task looming ahead that morning was unlike any I had ever been through.
As I lay there, trying to gather every ounce of strength in my body, I thought about the whirlwind that had been the last 6 months. Just barely 6 months prior my daughter, and then I, had been diagnosed with Cowden’s Syndrome. I had read and researched and didn’t like much of what I saw. I digested elevated cancer risks in just about every body part – some of them astronomical – as I tried to triage the onslaaught of new specialists taking over our lives.
Cowden’s Syndrome was an explanation. It wasn’t something we had just “caught.” She was born with it, and its likely that I, a “spontaneous mutant” was born with that “frameshift mutation” on my PTEN gene as well. But now that it had a name, and a definition, now that there was knowledge, there was also responsibility.
We had Meghan to the endocrinologist almost immediately and 4 nodules were discovered on her thyroid. Emotionally scarring biopsy followed. We met an oncologist for intake as well. And I, I was set to deal with all those “peak at 40” risks that were now presenting like a time bomb in my own body.
I sat up when Felix came into the bathroom. I don’t remember much of our conversation. Somehow I got myself up and dressed and into the car.
We drove to NYU in a good deal of silence. I am sure I cried a lot. I shook quite a bit too. But it was time. The decision had been made.
Soon after diagnosis I was sent to a breast surgeon to address the 85%+ risk of breast cancer in Cowden’s Syndrome patients. I forwarded her my medical records before the appointment. At the age of 38 I had racked up 7 breast biopsies and had a mother who was a bilateral breast cancer survivor 15 years earlier. We barely had said our “hellos” when she told me, “It’s time to schedule a bilateral mastectomy.” I wasn’t stunned I admit, because I knew it was a possibility, but the matter-of-fact certainty with which she spoke was a bit unnerving.
“You will get cancer,” she told me. “It’s not a matter of IF, but WHEN.”
I asked if it could wait till July. She said absolutely not. March 5th was as late as I could push her.
She ordered an MRI in February “just to be sure” everything was ok. The MRI was clean.
Just a normal “prophylactic bilateral mastectomy.” If there is such a thing as “normal…”
I met with the plastic surgeon, arranged for the implants. I blatantly refused tissue expanders, much to her chagrin.
My mom, during the time of her surgery had once called her breasts “superfluous tissue.” I tried to keep that in mind when I was making mind- numbing decisions.
We got checked in at the hospital before 7 AM. There was a whirlwind of doctors and nurses traveling through. Some had me signing consent, others were checking various things. I wanted to run, and scream. I felt like I was stuck in a bad horror film. But, I sat. And I signed papers. And I waited.
And then it was time.
It was a long walk to the operating room after I kissed my husband. I couldn’t much control the tears. I was terrified. The last thing I remember preoperatively was my surgeon looking me right in the eye and telling me, “You’re doing the right thing. You’re doing the brave thing. There is NO other choice for you.”
I woke up hours later in recovery, and after first verifying that the anti-nausea meds had worked, and I had no urge to vomit, I checked out the bandages covering my chest and I felt… sweet relief!
Even now, as I think back three years later, I am certain that was my first, and most genuine emotion. I felt relieved. I felt empowered. I felt victorious. This was one battle Cowden’s was not going to win. We played on my rules and my time… ok, well the doctor’s time… but still! I knew of too many lives lost to breast cancer, and I would not be one of them. One less worry. More time to be the Mom and help my girl through this genetic mess.
I left the hospital about 28 hours after I got there. The drains were the worst of it all. There was pain, no doubt, but it was all tempered by the peace in my soul. Mom stayed by my side for days, and we had some of our best conversations as I sat in the glider I had used to rock my baby Meghan to sleep 8 years prior.
Pathology was almost an afterthought for me.
That was why I was taken by such surprise when, 8 days later, the surgeon removing the drains said, “you made the right call.”
At first I was confused. I thought maybe she was just advocating my decision. Then she showed me the multiple page pathology that cited 1cm of DCIS (Ductal Carcinoma in Situ) a “self-contained” malignancy. There were all sorts of other markers too. Cellular changes to indicate things were starting to go very wrong. Because the DCIS was so far from the chest wall, I would need no treatment at all. An hour before I didn’t even imagine I had HAD cancer. Now, I was being declared cancer free.
“If you had waited for July to get this done, you would have likely been in a fight for your life.” I will probably never forget that sentence.
I stepped onto the street in NYC with my husband and my daughter. We all took a moment to digest what had gone on. We hugged. Then I grabbed hold of Meghan.
“You my dear, saved your mother’s life.”
Confused, “How do you figure?”
“If it wasn’t for you Meghan and your diagnosis, no one ever would have pushed me into this surgery. I would have found the cancer much later. Possibly too late. I am going to be Ok BECAUSE of you…”
As we let the gravity of that sink in, it was the ultimate lesson in perspective.
The steps that put us in line to have her, and ultimately me, diagnosed were life altering in so many ways.
Every piece of our past is a bit of the puzzle we are forming with our lives. Some of the pieces are confusing, and don’t seem to fit. But, sometimes we just have to wait patiently and watch.
Well, I wish I had a short term memory
Wish the only thing my eyes could see
Was the future burning bright right in front of me
But I can’t stop looking back
Yeah, I wish I was a perfect picture of
Somebody who’s never not good enough
I try to measure up but I mess it up
And I wish I wasn’t like that
I wish I wasn’t wishing anymore
Wish I could remember that nobody’s keeping score
I’m tired of throwing pennies in a well
I gotta do something
Here goes nothin’
It’s day one of the rest of my life
It’s day one of the best of my life
I’m marching on to the beat of a brand new drum
Yeah, here I come
The future has begun
Day one
Well, every single day Your grace reminds me
That my best days are not behind me
Wherever my yesterday may find me
Well, I don’t have to stay there
See my hourglass is upside down
My someday soon is here and now
The clock is tickin’
And I’m so sick and tired of missing out
It’s day one
And here comes the sun
Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Every morning, I will fix my eyes on You
Every morning, every morning
Every morning, mercy’s new
Every morning, every morning
Sun’s coming up, the beginning has begun
Starting over, I’m starting over
Starting over, I’m starting over, starting now
I’m starting over
Starting over, I’m starting over
Starting over
Starting over, starting now
I’m starting over
beatingcowdens 