In the spirit of one day at a time… today she feels well.
Today homework is already done.
Today her stress level is low.
Today she swims in the water like the fish she longs to be.
Today as I sit poolside with my computer, I can watch her laugh and smile with her teammates.
Today the less rigorous of the two practices, her CYO team comes first – but she is sure she can manage a double practice.
Of course about 7 days ago we raised the Celebrex back to its (in my opinion) too high dose.
No one can figure out why the drug works for her, but it does. And I am grateful, but scared all at the same time. The list of medicine grows. The knowledge of Cowden’s Syndrome remains spotty at best.
We know of the cancer risks, but the chronic pain, the low endurance, the vascular issues, the migraines….
One of our doctors theorizes that the Celebrex has kept her AVM in her knee from acting up. Given the potential side effects of Celebrex I think it’s the medical equivalent of robbing Peter to pay Paul.
Sometimes I feel like with all the doctors we see, there is still no one minding the store. We travel between specialists, between symptoms, between surgery and recovery.
The blood for the thyroid won’t be drawn for a month. She slept 14 hours Friday night and another 12 Saturday night. No major plans for us for a while.
The throat clearing never stopped with the thyroid removal, and I am flat our unsure who to even ask.
Sometimes I like to play mind games, and forget about Cowden’s all together. I daydream a bit…
And then I remind myself that every illness, every experience, every event that occurs in our lives helps to define us and make us who we are supposed to be. Like that ‘ever changing puzzle” my Dad used to tell me about.
And I think of my friends and family. They are contending with diagnoses new and old. None of them fun. I would never say to them that experience shapes who we are. That is a personal belief that the wrong person just might deck me for.
Especially on my heart is my internet friend from Australia. Never have I felt so helpless as her daughter endures multiple brain surgeries and I am 12 hours and several continents away.
Today. Today my girl feels good.
Today I will do as I have been taught and let tomorrow worry about itself.
I looked up at my Christmas Tree this week and was struck with the incredible sense that I would love to take it down. Now.
I know that’s wrong for any number of reasons, but I have always been candid here.
In the 10 days since we have buried my father there has been a whirlwind of papers and errands. There have been things to organize and sort. There have also been “regular” things to do, as I pretend to feel like I am part of the world going on around me.
And as I sat in the chair last night trying to absorb the beauty of the brightly lit tree and the litany of memories spread out across it as the ornaments we have collected through the years, I couldn’t shake how disconnected I feel.
This year the reasons are kind of obvious. I am starting to think its likely to get worse before it gets anywhere close to better.
Then my husband reminded me about last year. He reminded me about Hurricane Sandy, and the fall Grandma took, and the days in ICU. He reminded me about the car accident last November, and the months spent sorting out the paper, aggravation, and pain in my back.
It was right after Christmas last year that we had the “Santa” talk with my girl. My one and only.
So, I guess I knew all along this would be a year I had to look a bit harder for the magic. We looked hard in Disney in August. And we found it.
But, by the time we put the tree up this year my father lay dying in the hospital with less than a week to live. That day our family turkey and Felix’s special gluten free stuffing warmed the house with a soothing aroma. I heard the Christmas tunes. I helped with the ornaments. And I felt like I was in a bad movie.
Meghan had suffered with migraine headaches most of October and November as my father was sick. An MRI on November 20th confirmed the migraine headache diagnosis and the medication – once doubled – finally brought her some relief.
I couldn’t get the cards together this year. I just couldn’t do it. Maybe some time around Valentine’s Day I will feel up to a greeting. I ordered the food for Christmas dinner too. Yep, its better for everyone anyway, as I am a rotten cook. And the family is bringing dessert. I bought gifts for the children. Although even those were mostly purchased online. And so many of the adults are getting gift cards to their favorite stores.
Last weekend Dad’s mom was in the hospital. Today she is back at her home, but she is worn out.
And as I size up the dust that has gathered in every corner of my home I strive to remind myself that Baby Jesus was born in a stable, and slept in a manger. Somehow, as long as we open our hearts to celebrate the real meaning of Christmas, the miracle of the birth of the Baby Jesus, it will all be ok. Somehow.
So tonight as I took Meghan to her 6 month thyroid check up; the appointment where they monitor those pesky precancerous nodules, I was reminded yet again that it is just not ours to control. After the doctor examined her, and her neck, he asked for a tape measure. He measured “significant” growth since June in one of the right side nodules. “No point in wasting time with a sonogram, I need a tissue sample so we will schedule a biopsy.”
My heart skipped a beat.
“Where did you get that necklace Meghan?” asked the nurse.
“My Grandpa Tom gave it to me. He died this month from pancreatic cancer.”
Sometimes silence really is deafening.
“It may take a few days to get it scheduled Mrs. Ortega. You know, with the holidays…”
And it is Saturday. I hate it when Saturday is rotten.
And I am tired. And worried. And my heart is heavy.
I guess that makes me in the same boat as most people.
And then there was a text this afternoon.
And just like that breast cancer claimed another life. Just like that two women had no mother, and a husband lost his wife.
To the best of my knowledge she didn’t have Cowden’s or BRCA, or any other genetic cause for her cancer. But then again, neither do most people. And I was reminded again that maybe having Cowden’s makes me a little luckier.
I knew to get the beast before it got me.
She was not old enough to die. But, then again, who is?
And even when I held her hands in June and looked her square in the eye, and told her to fight with all her might – I knew. She knew too. Deep in that place where the thoughts are that you just don’t want to think, or feel, or believe. We both knew that this is how it would end.
Cancer is stupid, and mean and nasty, and ugly and awful. It’s a big bully and I really hate bullies.
I’m pretty much over this “Breast Cancer Awareness” thing.
As a matter of fact I am over the whole cancer thing altogether.
Ready for a cure.
Broken hearts. Lives crushed. Too many wakes and funerals. Too many people gone too soon.
My heart hurts. My head hurts. And I think some part of me feels guilty.
Guilty for having a “head start.” Guilty for having the support to push me through the double mastectomy.
This is the first person in my life to die of breast cancer since my diagnosis. I am sadly sure she won’t be the last.
And, like so many things that have changed since March 5, 2012 – this one hurts differently. Worse.
I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.
Tonight was the night.
What an amazing show. I am so glad to be familiar with it now, and you should check it out!
Somehow the words came pouring out. It’s amazing what speaking from the heart can do. I can only hope that someone tonight knows what they didn’t know before.
I find there to be no coincidences in life.
After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer. Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.
(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much! But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)
Near as I can figure these days, breathing increases your cancer risk. But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.
There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us. But we can do what we can to help.
There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.
People ask why we devote so much of our time, energy and budget into healthy food.
Genetics are not on our side. But we can fill our bodies with healthy, pure, organic superfood.
These days the core of the nutrition in our home comes from Isagenix. It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.
When it’s all about to fall apart, what is a mother to do to hold it all together?
Anything she possibly can!
Months ago I wrote a blog about how Cowden’s Syndrome changed… my phone. And its true. I could not manage the appointments and chronic craziness without Siri, my BFF.
And, when the navigation in my car quits, which it often does, Siri is the one to get me home.
So how did Cowden’s Syndrome change my entire way of eating?
After our diagnoses in the fall of 2011, my dear husband ate his way through his stress. I can’t blame him. Imminent cancer risks for your young daughter. Thyroid nodules galore. Biopsies every 6 months. Vascular problems. Pain. A wife facing a mastectomy, and subsequently a cancer diagnosis, and a hysterectomy. Tumors on her spleen… and the list goes on.
By November of 2011 he was here.
I had known him since 1997 and had seen his weight fluctuate from attempt after attempt to get the stress eating in check. Being a big attractive guy, he was able to disguise his weight very well for most of the “ups.” But I knew this level of yo-yo dieting was not good for him. I also knew we needed him, strong and by our sides.
My husband is soft-spoken, and talks to very few people by his own choosing. I had to get his permission before I hit “publish” on this one. But if you listen carefully when he does talk, he always has valuable advice and a story to tell.
Some time over the winter of 2011, into early 2012… maybe it was right after my double mastectomy in March of 2012, he had a revelation. While sitting uncomfortably on the couch one night, he tried to move a pillow out of his way. Only to realize it was his waist.
A month after that during a physical he left the doctor’s office with prescriptions for his high triglycerides, his high blood pressure and his high cholesterol. Darned if I was going to put MORE junk in his body we went to a trusted cardiologist. He told Felix there was nothing wrong with him that losing 50 pounds wouldn’t fix. He gave him a script for a prescription strength fish oil. We tossed the other scripts in the trash.
That was the moment of truth, and we went on a hunt together for what would help.
Fortune, and opportunity, and the grace of God had placed a new friend in our lives that year. She was a blessing to Meghan, but subsequently to all of us. She had begun her Isagenix journey that year and was seeing incredible success.
For years I knew that diet and nutrition were the key to so many things. Meghan never even spoke until we removed gluten, dairy and soy from her diet at the age of 2. We saw her developmental delays resolve as her stomach quieted. We moved mountains to feed this kid right, and provide her with nutritional supplementation of only the highest quality. As I listened to my new friend describe Isagenix, I heard words I already knew to be true. This company had everything I knew about nutrition – ready to help my husband.
So we started him on the “30 Day Cleansing and Fat Burning System.” Within days he reported feeling better. He was expressing clarity of mind. He had energy. He had less of a desire to eat junk. His palate was changing and he was fighting me for the rest of the vegetables at dinner.
I was amazed, grateful, and impressed. But not surprised. It all made sense. Put maple syrup in your car’s engine and you ruin it. Run it of pure gasoline, change the oil regularly, and you are golden. Why would we treat our bodies any less efficiently?
Felix and Meghan January 2013
Over the next 11 months I dutifully adjusted his “autoship” so that the products would arrive at our home ever 29 days. He modified the portions of the program that work for him, and he woke up in August on his 40th birthday 50 pounds lighter than he had been over 18 months before.
For the first time, in the 17 years I have known him, the weight is GONE. RELEASED – not lost. It will NOT be found again.
He tells me this is not a “diet” but a lifestyle change. He will not start his morning without his shake and his ionix vitamin. He will not go more than 3 weeks without a “nutritional cleanse” that is the lifeblood of why this works. (Nutritional Cleansing releases toxins from the body. Without that release of toxins your body begins to hold onto the weight again.)
After all of this regulating the autoship, and paying monthly for high quality nutrition, some time in May I looked up and realized I was missing a HUGE piece of this.
First of all, I ordered myself some meal bars, a few shakes, and some E+shots. My body, stressed to the max, even though it was thin – needed nutrition badly. I was able to eliminate my diet soda habit – something I had tried to do for years with no success. I can not stomach dyes and junk foods I used to live on. My body just WANTS the real stuff.
Then they came out with a shake that would meet Meghan’s needs.
And then we were three consuming Isagenix, and feeling better each day. What an amazing thing to listen to your ten-year old TELL you when she NEEDS a shake. I am convinced the only reason she can swim the way she does is because she refuels with Isagenix.
So, what does a family benefiting from a product do?
They talk. Finally. After all that I finally got around to telling people of our success. Of the quality of these products. Of the positive life changes.
And people wanted to know more. So I learned more. And I helped them. And they are getting healthy too. What a rewarding feeling.
I have had to contend with the negative folks along the way. The ones who whisper, “That’s a multilevel marketing company..” as if that made it evil?
Yes. Isagenix is a multilevel marketing company. There is no mystery, And no one tried to hide it. There is no one breathing down your neck to sell or share the products, and you are free to purchase and use for as long as you like. We did it for 11 months. But if you share (which is what I learned to do as a small child in school – simply share) and you help others, you get rewarded for that.
Then I signed someone up. And they were happy. And I felt good. And then another, and another.
And before I knew it there was this Visa card on my desk with money on it. Money I had earned from telling our story. Money I can use to do whatever I’d like.
It got easier and easier.
You see people say to me, as I had said to my friend, “I am not a sales person.” Me either. I am sure I couldn’t sell knives, or vacuums, or other random products. What I CAN do is tell the truth. I do it well. My candid honesty ties into my “take me or leave me” philosophy. I have no time for nonsense or drama in my life.
But now I tell people, quite honestly, that I don’t pay for my Isagenix. We eat MORE products than ever, and we eat them for FREE. Now in my 8 years of buying nutritious food, THIS is a new concept.
And I like it.
Isagenix has changed all of our lives in different ways. And we have all benefited. Felix needs to be strong for Meghan and I. And my Cowden’s Syndrome buddy and I, with our tendency towards cancer, tumor growth and a whole host of other problems, need to give our bodies pure nutrition so we have the strength to stay healthy.
We are now, and forever an Isagenix family.
It’s one of the strategies we use to keep it all together.
After last night’s late night strep diagnosis, there was no way I could send her to Bible School this morning.
But, I had an appointment with the breast surgeon – a routine follow-up that I knew would take 5 minutes.
(That is why I had scheduled it July 16th when I was ALREADY IN the city- but last-minute doctor vacations are just one of the many inconveniences of life these days.)
I knew it would take 5 minutes – after I drove through an hour and a half of traffic, parked the car, walked a half mile, and waited to be called.
Truth be told it was lest than 5 minutes. A three-minute groping of my silicone implants and surrounding lymph nodes. The proclamation was made that everything looks “great” and I should return in 6 months. I actually was probably dressed and on my way before 5 minutes were up.
But, I HAD to go. It would have been too easy to cancel. It would have been too easy to blow it off. And what if? What if that one renegade cell… Nope, I HAD to go.
And, Meghan had to come with me. She trekked like a trooper to the main hospital to get another copy of the CD of the MRI of her hand for the orthopedist appointment at 2:30. Then, we traveled on the journey to the Clinical Cancer Center. I had to push her in the push chair today. The strep was knocking the wind out of her this morning and the hips and knees were bothering her.
It was also bothering her that people were staring at her. So it was a great opportunity to give her LOTS of really LOUD pep talks. I hope a few people overheard. Some people are really dumb. Others mean well – but for goodness sakes, don’t just stare at the child. Say “hello,” “good morning,” ANYTHING… UGH! But anyway…
And after the 5 minute appointment there was another hour in travel time back home.
Just in time to let the dogs out and run to pick up some chicken breast cold cuts for her to eat before physical therapy.
As she inhaled the chips and chicken I spoke with the therapist. I am always just so impressed by how smart she is, and how much she actually cares about Meghan. She took the time to READ about Cowden’s and to try to understand WHY and HOW the small fatty masses on her palm are affecting her. If only there were more…
Right after therapy it was off to the orthopedist looking for a few answers about the hand and the wrist.
That’s where things unraveled.
Ok. I understand it’s a rare disease. I do.
I get that with an occurrence rate of 1 in 200,000 you may not have touched on it in medical school.
But, you insisted on the paperwork completed online a full 10 days before the appointment. You could have read it, or had someone flag it.
And, I made the appointment with the doctor who had been prepped already.
Bait and switch?
The orthopedist today was amazingly young. I guess the big 4-0 is approaching fast, because I could scarcely believe he was out of medical school. Everyone seems to be looking younger and younger.
No need to remind me of what that implies. I get it.
We have seen LOTS and LOTS and LOTS of doctors. MOST would rather make something up than admit they didn’t know something, which is a problem in and of itself. Not this guy.
He examined her hand. Validated the pain. Looked at the MRI report. Declared there to be “nothing orthopedic” about her problem. And then he said,
“I don’t know ANYTHING about Cowden’s Syndrome, so you’ll have to tell me what it is and what it does.”
I almost asked him to repeat himself, but that would have just been to buy me time for my response. So, as I was gathering my bags and looking to exit as fast as I possibly could, I gave him a brief lesson on Cowden’s Syndrome.
Cowden syndrome is a disorder characterized by multiple noncancerous, tumor-like growths called hamartomas and an increased risk of developing certain cancers.
Almost everyone with Cowden syndrome develops hamartomas. These growths are most commonly found on the skin and mucous membranes (such as the lining of the mouth and nose), but they can also occur in the intestine and other parts of the body. The growth of hamartomas on the skin and mucous membranes typically becomes apparent by a person’s late twenties.
Cowden syndrome is associated with an increased risk of developing several types of cancer, particularly cancers of the breast, a gland in the lower neck called the thyroid, and the lining of the uterus (the endometrium). Other cancers that have been identified in people with Cowden syndrome include colorectal cancer, kidney cancer, and a form of skin cancer called melanoma. Compared with the general population, people with Cowden syndrome develop these cancers at younger ages, often beginning in their thirties or forties. Other diseases of the breast, thyroid, and endometrium are also common in Cowden syndrome. Additional signs and symptoms can include an enlarged head (macrocephaly) and a rare, noncancerous brain tumor called Lhermitte-Duclos disease. A small percentage of affected individuals have delayed development or intellectual disability.
The features of Cowden syndrome overlap with those of another disorder called Bannayan-Riley-Ruvalcaba syndrome. People with Bannayan-Riley-Ruvalcaba syndrome also develop hamartomas and other noncancerous tumors. Both conditions can be caused by mutations in the PTEN gene. Some people with Cowden syndrome have had relatives diagnosed with Bannayan-Riley-Ruvalcaba syndrome, and other individuals have had the characteristic features of both conditions. Based on these similarities, researchers have proposed that Cowden syndrome and Bannayan-Riley-Ruvalcaba syndrome represent a spectrum of overlapping features known as PTEN hamartoma tumor syndrome instead of two distinct conditions.
Some people have some of the characteristic features of Cowden syndrome, particularly the cancers associated with this condition, but do not meet the strict criteria for a diagnosis of Cowden syndrome. These individuals are often described as having Cowden-like syndrome.
It’s a thin line between love and hate. That’s how the story goes right?
These days I feel I am walking a very thin line, teetering tenuously between confidence that I will end on solid stable ground, and terror that I will just fall off.
Balance has never been one of my strong suits. But I try. Every moment of my life I try.
It’s a thin line:
between paid work and “real” work
between schedules and chaos
between strong and terrified
between education and being “over informed”
between smiling and crying
between a cider drink, and a few ounces of straight rum
between prevention and over protectiveness
between not screening, and missing it
between realizing everyone has struggles, and feeling overwhelmed by your own
between knowing it could be a whole lot worse, and wanting to crawl into a corner and give up
between a vacation, and a time to catch up
between feeling lonely and being alone
between cancer and “precancer”
between prevention and overzealous
between holding your girl as she cries in pain, and crying the night away yourself
between asking all the right questions, and asking too many questions
between BEATING COWDEN’S, and giving in…
It’s a thin line.
I am walking it every day this month, as the schedule changes constantly, and the number of days I had nicely confined so as not to overtake our summer quickly begin to envelop July.
I am walking it, as I wait for call backs that never come on time – cell phone pressed into my fingers.
I am walking it as I wait to schedule haircuts, and dentist appointments, and things that “normal” people do.
Why do I ask so many questions? Why do I push for answers no one really wants to give? Why?
Because if I don’t – who will?
It’s not going away.
When I walk the line with Cowden’s syndrome, and vigilance on one side – ignorance and denial seem to be on the other.
I don’t plan to fall – but if I do, I know where I need to land.
Even new beginnings start to become normal occurrences, and things begin to wind their way into the much anticipated summer vacation. New beginnings can’t stay new forever, and as the school year comes to a close we have spent some time reflecting on the twists and turns that caused it to end much differently than it began.
Meghan finished fourth grade with her normal grace and poise – and I am sure good grades. (Report cards are given tomorrow.) Although she finished the year alongside different students, and in a different building then when she began, she finished with the same bright smile and cheery, friendly personality, that quickly endeared her to the young and old in her new environment.
There are some people she misses from her old school. There are some people I miss. There are circumstances neither of us miss at all.
This wasn’t the plan. But really, as I keep learning – we don’t actually get to plan everything.
Learning experiences. That’s what they are.
You never really know what tomorrow will bring.
Make the most of what you have where you are.
Trust your heart and your gut. If it feels broken, it probably is.
Reduce your stress. Eliminate toxins. Its good for the body, mind and soul.
No experience is wasted. No interaction is a loss. People come in and out of our lives, some for a season, some for longer – but always for a reason.
Finally, not a summer of overwhelming homework, but not a summer of fun-filled camp days either.
Thursday we visit Sloan Kettering again. Time for the thyroid sonogram. How could six months go so fast? And as the appointment closes in she starts to articulate her fears. They are the same as mine. I should know that she is smart enough to process. To understand that they are looking for thyroid cancer.
On Friday we see the vascular surgeon for a follow up, and then a genetics follow up. Meghan loves to visit the geneticist. She says, quite correctly, that he saved both of our lives. I remind her that she saved mine. She smiles, and hugs me, even as she says quite matter- of -factly, “well when I get breast cancer – at least I know they will catch it early.” Ever wonder what it feels like to be sat on by the ‘elephant in the room?’ Well, as I gasp for breath – speechless, I give her a hug. No empty promises to offer. I can’t. I won’t. She would see right through them anyway.
This is our life. This is how our summer begins, and between the two of us, it doesn’t really let up. There is little time for camp, or beaches. We will sneak in a few play dates. We will get away for a few days in August. She will read a few great books. We will spend a lot of time on the expressway, or the bridge, or in waiting rooms all over Manhattan.
This – this is why we need a life free of toxins.
This is why we eliminate unnecessary stress.
Cowden’s Syndrome carries enough stress of its own.
You see this will be our life – forever. And the sooner we adjust, and find the balance, the sooner we learn to roll with the reality – the better off we will be.
Forever.
Forever is a long crazy concept. Forever – while trying not to plan too much. Forever.
Forever has this awful way of disappearing sometimes.
I used to think Pop’s vegetable garden would be around forever.
GiGi and Pop
Well, actually I guess it is. I just grow it for him at my house now.
First I was a daughter. A sometimes mousy, sometimes mouthy daughter. I was respectful, but hated to be stepped on. I wrote letters to the editor when I was annoyed. I let people know how I felt.
Then I was a teenager. I was full of opinions and was quite sure they were all right. I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.
I spent 4 years away at college. Even though I didn’t want to – lol. I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college. I am not sure I would have done either. At college I learned to stand on my own two feet. I met all sorts of people from all walks of life.
By the time I hit my 20s life had educated me some. I still held strong convictions, but I was able to accept that it was ok for others to have their own. I gained the belief that as long as people were respectful – we could disagree.
In my 20s I met my husband. A match that many thought was destined to fail. And unlikely pair we compliment each other in every way. He was my missing piece.
In my 20s I became a teacher. A lifelong goal realized. I worked harder than I ever had in my life to be the best I could be. I recognized the magic of teaching. I became addicted to the “spark” in their eye when they “get it.” I came to see that my presence and my attitude were as important as my lessons. I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.
In my 20s Mom had cancer. And I learned what it was like to be scared. And I learned what really really matters in life. And she fought, and she won. I always appreciated my family, but I learned to appreciate them even more.
In my 20s I got married. I got my Master’s Degree. We bought a house. We tore it apart. We fixed it up again. We got buried in debt. We worked hard to get out.
Then – just about when I was ready to turn 30 – we had Meghan.
Disney 2012
Mom said you do more changing in your 20s than in your teens. She was right. But as my 30s come to a close – I think they beat my 20s hands down.
In my 30s I learned to love my heart, outside of my body. I learned that I would never be as important as that little human we created out of love. I learned about family all over again.
In my 30s I learned to live without sleep. I learned to endure tears and screeching and pain as my heart ached for my baby girl. I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.
In my 30s I learned how to balance two full time jobs, as a mother and a teacher.
In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.
In my 30s I became really close with God. I learned that my relationship with Him transcends walls and buildings and people. I learned gratitude, and I learned not to be shy about my faith.
In my 30s I learned that convictions can change. And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.
In my 30s I learned that close friends share bonds that go past time and distance. I learned that even though I miss them, they are there when the going gets tough. I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.
In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed. I learned doing something is way more rewarding that complaining.
In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them. And I learned that if you do – they will be your friend forever and ever.
In my 30s I learned what it was like to hear the words “You have a Rare Disease.” I learned words like “Cowden’s Syndrome.” I learned about “tumor suppressor genes,” and “genetic mutations.” I learned about risks and tests that could take worry to a whole new level- if I let it.
In my 30s I learned what it was like to hear the words “You HAD cancer.”
In my 30s I learned which body parts are “extra.”
In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”
So much has changed, and yet at my core, my heart – I am the same.
I feel. Deeply and truly. I care. Often too much. I laugh, and I love with my whole heart. I know pain, and I know joy, and I have been intimate with both. I know fear and bravery. I know that I am not always right – but when I am… watch out. Because little will stand in my way.
I know life is not fair.
I know God is Good.
This weekend I went to 2 wakes. One for a woman who had lived a full life, and another for a young girl who sparsely got the chance. There are too many wakes. There are too many things that don’t make any sense. Too many people gone way too soon.
I can wail and cry and wither away in my sadness. I can let fear win – or I can stand strong.
Cowden’s Syndrome tries to win. It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump. But I will not let it paralyze us. I will not let it win.
So we have our team of doctors. We have our visits scheduled. We check it all. Sometimes its tiresome. Sometimes its discouraging. But I would rather be out in front of the boulder – than under it.
This is really how I view the race against Cowden’s Syndrome
Through it all I know Meghan is watching. My student – learning from how I react, how I fight, how I handle adversity. My teacher – teaching me bravery, courage, candor, tenacity, and stamina.
I do the best I can to show her that its important to stand up for what you believe in.
I think she gets it. I know I do.
The 30s have been a ride, and I still have a few more months to go.
In my 30s I learned what it was like to total a car. I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix. I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.
If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.” Working with the neighborhood to change a few things at my car accident site.
May 16th for years has had a special place in my heart.
In 1985 my cousin Meghan was born. I was in the 6th grade and giddy to get to know her. I never could have known at the time that her life would be tragically cut short after a more than 4 year battle with leukemia.
“Angel Meghan” – 1987
Her feisty nature, her smile, her spirit, and her strength have always been an inspiration to me, and it was an honor years later, to be able to name my daughter after the spirited young girl who became an angel at 6 and a half, on my 18th birthday.
My daughter carries so many of the characteristics that endeared my cousin to me. She is the same kind of spirit, who lights up a room, and makes everyone smile by being around them. She endures medical procedures sparsely batting an eye, and accepts the reality of her life with grace.
Last year on May 16th I was at NYU hospital, just 10 weeks after my bilateral mastectomy, undergoing a complete hysterectomy. I knew that day I had the prayers of my family, and the strength of my angel by my side.
I have a “thing” for dates. I remember numbers. Maybe this is how my love of math shows through. I like answers, and things that are absolute, or make some sense. Maybe my recognition of dates, and anniversaries is a way of marking time – or maybe its a way of celebrating. These anniversaries that I remember – some sad, others bittersweet, have shaped me as a person. They are all pieces of that every evolving puzzle.
I thought about the surgery this morning. I thought about it being a full year since all my “girl parts” were officially gone. I thought of the perils of the hysterectomy recovery and how in so many ways this was a tougher surgery for me. Then I thought about my relief, and how much less of a cancer risk I am than I was a year ago. And I got dressed with a smile.
I thought about Angelina Jolie. I thought about how happy I am for her – that she was able to make an empowered decision to get out in front of her breast cancer risk. I thought about how happy I am that she has brought genetic testing into light.
But a few things have really bothered me.
PTEN mutations (Cowden’s Syndrome and the sister disorders) carry with them the same imminent breast cancer risk. I myself had been tested for BRCA1 years before I ever knew of PTEN. I was negative. The genetic counselor who tested me did not even have PTEN on her radar screen. I know its rare – I do. But I have to believe this is the opportune time to at least educate the medical professionals, if not the public, on the reality that there are other genetic mutations that carry imminent cancer risks. I am sure there are more that I haven’t learned about yet. Let’s use this opportunity to raise awareness not only of the “popular” genetic mutations, but of the others as well. Had my daughter never been diagnosed, by the well educated geneticist – it is likely I would not be here to write this today.
I am also bothered by the haters. You know the haters. The “Monday morning quarterbacks.”
They have crept out in quantity and I have a few words for them too.
BUTT OUT!
If you don’t like the idea of a prophylactic mastectomy – then don’t have one. Plain and simple.
If you don’t like the idea of a complete hysterectomy at 38 because the alternative was 4x a year – yes you read that right- 4x a year SURGICAL uterine biopsies, then don’t have one.
When you live with the Sword of Damocles hanging above your head every day, when you have to go about your business, and work, and raise a child, and pay bills, and shop and function with the feeling of impending doom that is sometimes hard to shake – when you have a diagnosis of a genetic mutation that is not going away no matter what you do. Then, maybe then you and I can talk.
Until then, wish Angelina a good long healthy life. Look up “genetic mutations that cause cancer” or “The Global Genes Project” or “The National Association for Rare Disorders.” Get a feel for what we go through every single day of our lives.
You probably wouldn’t know us if you passed us on the street. We are some of the strongest and bravest and smartest people you will ever lay eyes on. We stop and smell the roses. We hug. We smile. We laugh. We get how fleeting life is.
May 16th will always be a significant day for me.
But, moving forward -so will every day. The first year is over. Now on with the rest of our lives!
beatingcowdens 