Sometimes you read a story that just needs to be retold.
This link will take you to the world of a young lady I “met” through my blog and have come to respect.
She does not share my same genetic mutation, hers is the BRA-CA gene, and mine is PTEN. But the breast cancer risks are ridiculous for both, and she bravely as a young twenty something, underwent a prophylactic bilateral mastectomy.
In a rare request, she is asking for help, and I certainly feel compelled to share her reasonable request.
It is through social media that I have come to find others “like us,” to share mine and Meghan‘s story of our Cowden’s Syndrome battle. Without that outlet, I would feel incredibly lonely.
Please take a moment to read Rachel’s story, and another to respond to her request.
My mom is a member of the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. She has been paddling with the Pinks for about a year now. Last night, one of her teammates passed away after a long battle with breast cancer. Frances was my mom’s benchmate on the boat. On the Pink Dragons’ Facebook page, Mom writes: “Frances, your courage and determination was an inspiration to all of us. Your teammates will miss you so. Rest in peace, dear friend.”
Then scrolling down through my Facebook newsfeed, I was accosted by another heartwrenching message, this one from Bright Pink founder Lindsay Avner: “My heart breaks upon learning of the loss of Rebecca, a member of the Bright Pink Vermont family, who lost her battle to breast cancer at only 29 years old.”
What a year! Just months after our diagnosis of Cowden’s Syndrome in the fall of 2011, Meghan and I took on 2012 completely unsure what to expect. As a matter of fact this very week last year, I was anxiously awaiting word on her thyroid biopsy slides that I had had transferred to a new hospital. Ironic that I sit tonight, waiting to hear when the next thyroid biopsy will be. The more things change…
In 2012…
I lost the ability to say, “I can’t.” Instead I gained “Nerves of Steel” attacking this syndrome head on.
I lost my self pity and gained determination watching my daughter start her own awareness campaigns.
I lost my fear of driving on highways and in big cities. Now I navigate NYC like a (cautious) professional, and even venture to hospitals in NJ and Boston.
I lost my fear of ridiculously large medical bills. Instead I get to them when I can, knowing in most cases they are fortunately not mine to pay anyway.
I lost about 3 more sizes, and have finally settled into clothes that fit.
I lost my muscle tone, as wild days kept exercising at bay.
I lost sleep, and more of my brown hair to gray as worrying kept me up many nights.
I lost my breasts in a bilateral mastectomy, but replaced them with perky new silicone ones, and with that…
I lost my fear of breast cancer and those ridiculous breast MRIs!
I lost my feeling of loneliness after my surgery when I got to spend a week chatting it up with my Mom.
I lost some of my close friends, who understandably tire of hearing me repeat the same stories without resolution, but I gained an incredible online support “family,” through Facebook, through PTEN world, and through my blog.
I lost that sense that we are alone at this battle against Cowden’s Syndrome, and I gained a deeper appreciation for the friends that call, message, and connect me to organizations like NORD, and the Global Genes Project.
I lost my uterus, and my ovaries, but I was done with them anyway, and I gained permanent birth control and instant hot flashes!
I lost one of my Grandpas who I know I was so lucky to have for so long, but whose loss is felt deeply.
I lost my old cell phone, and finally traded it in for a “smart” phone.
I lost my old church, for reasons that still break my heart, but my family has been welcomed home at a new church where we are still marveling in God’s mercy and grace.
I lost my negative attitude about Staten Islanders when I watched my friends and neighbors rally to help the victims of “Superstorm Sandy.”
I lost my car in a ridiculous accident, but this week replaced it with a 2013 Hyundai Sonata.
I lost the way I sometimes took my grandparents for granted after Grandma Edith fell this fall. I always loved them with all my heart, but I will remember how lucky I am each and every day.
Family shot in front of the New Year’s Eve Ball.
In 2012 I gained tools I will use every day as I move forward.
I gained…
Determination – that we will beat this!
Focus- on what matters most.
Perspective- that everyone suffers.
Forgiveness- because negativity hurts me more than them.
Gratitude- for the kindness of family, friends, and strangers.
Compassion- as I watched my little girl continuously open her heart to others.
2012 had plenty of hard times, but like my car, it was far from a “total loss.”
This is the letter I send in my Christmas cards… shared for my “on line” friends.
“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34
December 2012,
Dear Friends,
It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus. This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.” Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.
Life in the Ortega house continues to be one of adventure. We are blessed. Meghan excels in school, and loves to swim and dance. Medication allows her to move her body without pain. We are grateful each day for each other, as it is that bond that allows us to weather the storms of life. And there have been some this year! Some time in early spring, Felix joked that I should start on my Christmas letter. He wasn’t kidding.
We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”
We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist. We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ. We have been scanned repeatedly – each MRI separate. Sonograms of every body part you can imagine. All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.
There is so much overlap as to how everything came together this year that it is even hard to summarize. I feel like sparsely a week went by without an appointment – many of them in NYC. I laugh now at the days I swore I would NEVER drive in the city. I don’t use the word “NEVER” much anymore.
In February, Meghan endured her 4th surgery for the arteriovenous malformation (AVM) in her knee. The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap. We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.” Again, not if, but when. So we wait. She will be scanned again in February to determine the status of the very stubborn AVM. Cowden’s Syndrome complicates any vascular anomalies.
In March I underwent a “prophylactic” bilateral mastectomy. After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step. Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction. The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast. The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.
Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later. A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy. So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.
A month later we took Meghan for her thyroid scan to Sloan Kettering. We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area. So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27th we go.
Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney. Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists. I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!
In the midst of our medical “stuff,” life continued around us. In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan. A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed. Our hearts will never be quite the same.
Meghan and GGpa
Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps. No one is quite sure exactly what happened, but it is evident that the angels held her that day. She suffered a serious head wound, and severe bruising, but broke nothing! She spent days in ICU, and returned home the end of that week. With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day. I admire my grandparents. As they approach their 67th wedding anniversary, they stand together as examples of marriage as God intended it. They are role models to us all.
Love my Grandparents!
Their marriage reminds me that God gave me a great gift when he sent me Felix. I can say that we share such love through God’s grace – that I can not imagine my life without him. He is my soul mate – and my sanity!
I guess I leave you with – to be continued. No words of wisdom this year. We are trying our best to take it one day at a time. The tree is up. We have our hearts and our heads focused on what matters. We certainly have had plenty of lessons!
We would love to hear all the things that are new in your home!
Warm Christmas Blessings,
Lori, Felix, Meghan, Allie & Lucky Ortega
“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story
The cards were in the mail Sunday night. I was getting it together.
Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.
I stopped at the stop sign. I looked to my left down the one way street I have traveled so many times before.
I was clear… and I drove.
3/4 of the way through the intersection…
I really did love my Hyundai
I didn’t see the SUV until it was in my rear driver side door. I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.
His car ended up a block away. There had been no braking. No horn. The impact shut his car down.
As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.
The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.
I have laughed and cried a lot over the last 24 hours. I am grateful that I am walking and moving. I am tolerating the muscle spasms and bruising.
As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood. What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.
The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to. Maybe… just maybe.
So I think of my little love.. and I am so happy she is safe. And maybe that thought is where I will draw my peace.
“Sometimes your blessings come through raindrops…”
Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….
There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you.
I saw this today and it made me think of some of the people I have met over the last year. Some of them don’t talk to each other any more, but I talk to them all. It’s just who I am.
Today I couldn’t get a phrase, shared by one of those on-line friends, out of my head.
This has been a tough week for me. It happens to the best of us. I know I am usually pretty positive, but this week it has been harder than normal. So when I shared some of my struggles she said to me…
I thought about it for a while. And you know what? It made perfect sense. She has had plenty of struggles of her own. Actually, she has had more than her fair share, but she brings it all to the table in the Cowden’s support group. She shares her ups and downs, her struggles and celebrations, and she just keeps right on swimming.
I think, to some extent that is what we have to do. Look it in the face, whatever it is… take a deep breath and keep on swimming.
Today is my birthday. I turned 39. And I am proud to say it. I have no intention of staying here either. Next year will be 40, and so on and so on.
But with my birthday comes a flood of emotion. This is just over a year since my Cowden’s Syndrome diagnosis. It has been just over a year since mine and Meghan‘s lives were forever changed by the news that we carry a PTEN mutation, and that our bodies are inclined to create benign and malignant tumors – all over.
Keep Swimming…
It has been eight months since the “prophylactic bilateral mastectomy,” which turned out to be a life saving operation when the pathology revealed stage 1 DCIS. I have almost adjusted to “the new girls,” but with each change of season comes the realization that the landscape of my body is forever changed. Old familiar sweaters need to be replaced. Nothing is quite where it used to be.
Keep Swimming…
It has been six months since the complete hysterectomy. The one Cowden’s Syndrome called for – way before its time. So as my body celebrates 39 – my hormones clock in somewhere around 55. And with no hormone replacements in the cards, we are learning to get used to each other. Not uncommon for me to go from a turtleneck to a t-shirt. Good thing there aren’t too many clothes to pick from.
Keep Swimming…
My birthday has been charged with emotion for years. Ever since we lost my sweet cousin Meghan to Leukemia at the age of 6, it has been a harder than normal day. Despite my best efforts, at some point emotion overtakes me. I have always been grateful for our deep connection – so deep that I named my daughter for her. But, somehow 21 years fade and the feelings are that of yesterday. Oh, how I miss her.
“Angel Meghan” – 1987
Keep Swimming….
My Meghan faces scary appointments in the upcoming months, as we determine if her thyroid nodules are growing or stable. Her health is always a tenuous issue, but her smile and positive attitude make it easier to press on. I wait for word on my spleen and my kidney… silent benign tumors that will either prompt more organ removal… or not.
Keep Swimming…
GiGi fell during the storm. Two weeks ago today we were very scared. Today she walked with help around the dining room table. Her feet still work, she was excited to discover. Surely this is a realization worth celebrating. Happy birthday to me.
Keep Swimming…
We went to Midland beach today with a few small things. A donation a friend from New Jersey had sent, as well as a few things Meghan and I picked up this morning. Sometimes paying it forward is the best birthday gift you can give yourself. If everyone gives just a little – time, money, supplies – whatever you can… it makes a world of difference. It matters.
These people. The people of Staten Island, and Breezy, and the Rockaways, and all the other coastal communities devastated by Hurricane Sandy, they certainly are showing their ability to…
…Keep Swimming…
Such an intense day. At times I laughed. At times I cried. At times I was proud. At times I was sad. Life is changing every single day. The ones you love, the places you are comfortable, and the people you are comfortable with – all transient.
I looked over my blog today. It has truly been a journey. And if you got this far you are reading my…
Who knew I had this much to say?Amazing you people find this interesting! 🙂 But I am grateful to have you.
Tonight I am reflective. I am enjoying my family and my wine. I am thankful. And I am tired.
It has been a long year. But a productive one. A year unlike any I had ever imagined. The journey here is far from over. I am thankful for my close friends, and my cyber friends. I am thankful for those of you who read, who I will never know. I am thankful for reality checks. I am thankful for celebrations, and laughter and tears – for they all make me who I am.
This is definitely a marathon, not a sprint. Cowden’s Syndrome, like life, requires patience, flexibility, and endurance, as well as a well-rounded view of reality.
I walked into a meeting this afternoon at the tail end of the work day. I brought the key to my room, and my phone in my hands. I sat and listened to the presenter, and as I got up to leave I gathered my things and realized my key was missing. Lately I have been losing everything. Maybe its stress, maybe estrogen loss, maybe I am just getting old. Who knows?
I looked everywhere. This year we were each given one classroom key, which also unlocks the bathrooms. It is a really important key, and I have been so careful. I even make sure I have pants with pockets every day so I can keep track of it.
I dumped the bag one last time, checked my pockets and checked my coat. No key. Realizing I was running late for Meghan‘s swim class, I resigned myself that I would have to look for it tomorrow.
Walking down the stairs something gold caught my eye. I looked down and there in the breast pocket of my shirt was my key. I only knew it was there because I saw it. That was when I was struck with laughter and remembered that
I always keep my key in my PANTS pocket, because I can feel it against my leg. No idea how or why I put it in my shirt pocket, but I won’t be quick to do that again.
They may be firm. They may not sag. But they certainly lack the feeling of being real.
Nothing like being able to laugh at yourself when the day is a bit rocky.
It’s been over 6 months, and I guess I am used to the new girls – because most days I don’t pay them any mind.
On the way out of the building my Assistant Principal asked me if I had found my key. I told him I had, but when he asked where it was I spared him the details. “TMI,” I said.
I went to pick up Meghan humming “Comfortably Numb,” the whole way. Probably not exactly what Pink Floyd had in mind, but hey – it works for me!
I get it. Sometimes it takes a bit – but I get it now.
I mean, I understood in theory what the American Cancer Society meant when they came out with this slogan, but today it really hit me.
Today was it – the “take two” for my little girl who was shut out of the Susan G. Komen Race for the Cure in September because of a fever. This was her chance to walk with Mom and Grandma. She even got the added bonus of having Dad with us this morning.
My Inspirations!
My HEART and SOUL!
Living where we do, an event like this seems to bring out just about everyone, and it was hard to take two steps without bumping into someone we knew. It was also almost impossible to look anywhere and NOT see one of those pink survivor sashes. I saw them on women of ALL ages – from the frighteningly young, to the admirably old, and it got me thinking.
More birthdays…
Before my mom had her cancer, she could have sometimes been caught cringing at the sound of “50.” After a double mastectomy, 6 months of chemo, and in the middle of 5 years of tamoxifen – she embraced 50 with a smile, and slid gracefully past 60. “Beats the alternative,” she often says.
More birthdays…
We waited with a group from Meghan’s school for a while, and it was hard not to read some of the “team” T-shirts. A large group gathered right next to us was commemorating a young lady who apparently died of breast cancer in 1994. Her birthdate was listed as 1971. What her family probably would have done for more birthdays. I can’t even imagine…
More birthdays…
As I stood there, I thought about the “previvors” I have “met” on the internet and from this blog. They have courage of a type no other can quite get. The courage to undergo a prophylactic bilateral mastectomy is not to be understated. I am impressed at the maturity of the very young, and the wisdom of those closer to my own age. But, I was struck, somewhere in between the quick math that left me knowing the young lady on the T-shirt had been 23 when she died of breast cancer in 1994, and that my own girl will be 23 in 14 years. Suddenly it didn’t seem that long, and I was afraid.
More birthdays…
My little girl will grow to be 95 I reassured myself. With the power and knowledge we have – she will know lots more birthdays. But the reality that my mom had cancer at 48, and I had it at 38, and the current screening recommendations are to screen 10 years before your closest relative had the disease, well – it made it hard to breathe for a few minutes. Then my husband reminded me that she has ALREADY been screened – twice. We will be vigilant.
More birthdays…
And then I thought about my own. I will turn 39 next month. That is the age some people like to stay at forever. NOT ME! I want MORE BIRTHDAYS!
My beautiful cousin Meghan died of Leukemia in 1991, on my 18th birthday.
More birthdays….
My cousin Meghan was a brave soul. She was diagnosed with Leukemia when she was 2. She fought for 4 years before the disease took her from us. She got her wings the day I turned 18, and every birthday since then has been bittersweet. We had a connection that I still find it difficult to describe. My love for her was deep enough, that I needed to name my daughter for our “Angel Meghan.” Meghan did not have enough birthdays. This may be the year that I look at mine a little differently. Maybe its time to use my birthday as a time to celebrate BOTH of our lives.
More birthdays…
We left the walk a little early this morning. We had to head out to Long Island. My nephew Luke was celebrating his 9th birthday today. And as the kids played, and the candles got blown out on the cake, I found myself really sure that I understood. As my sister said just an hour or so ago… It’s not about the gifts. It’s about the people you celebrate with. We celebrated Luke’s birthday with 3 GREAT grandparents, and 4 of his grandparents. It’s easy to fight for more birthdays when you are this blessed.
And this is how the day started. With thoughts of Friday. Never a good way to start the week. I am not one to try to wish my life away, but is it so wrong if I prefer days with my family over anything else in the world?
But, we got it together and got out of the house on time.
Waiting for Meghan to get on the bus, a car doing about 65 speeds down our street. As I refrain from the words I want to yell, I quickly say a prayer to myself – that his stupidity and selfishness doesn’t bring harm to anyone else. I am always appalled – and I don’t care how late you are – by the callous disregard for human life it takes to speed past a school bus. UGH!
Pretty much that sums up how the day continued. There is a sense of urgency in everyone it seems – except about what really matters.
Now I don’t claim to have it all together all the time. And I don’t claim to be free of frustration. Nor do I deny that the ,”Why Me?” bug does bite us all here sometimes.
But, I am still amazed by people who are so narrow-minded that they can’t see the world from someone else’s point of view. I am still deeply troubled by people who won’t take a minute to try to put themself in someone else’s shoes. And I am horrified by those so self – absorbed that they speed past school buses, and generally have little regard for human life.
Maybe that’s it. Maybe I feel like too many people don’t realize how precious life is.
I don’t mean it as a morbid thought – but it really is true. I look at my grandparents, still married – 67 years later at 92 and 93, and they always kiss each other goodbye when they go out. I would hope they will be with us forever, but reality is what reality is, and they take a moment to express their love – often. So many people could learn life lessons from my grandparents. They are role models to be emulated in so many ways.
Ist Holy Communion 2011, with GiGi and Pop
It shouldn’t take a rare disease. Cowden’s Syndrome or any other are not prerequisites for compassion. You shouldn’t need to have cancer, or multiple surgeries, or scary benign tumors, or to live in fear of any of the above, before you realize the value of life.
We are in a waiting period here. No major new doctor news. The headaches Meghan was suffering with have subsided, but I still need to get a neurology consult together for her. The joint pain is returning, slowly, one spot at a time. It is manageable still, but the requests for supplemental pain medicine are starting to take place at least 3 times a week. Hoping that the 100mg of Celebrex will be enough to keep her comfortable, maybe until they find the reason for her pain. We go to the eye doctor in 2 weeks. The cardiologist is the beginning of December. He will hopefully tell us that the one too many prescriptions required to keep my little love functional are not harming her heart. Then – on the 27th of December – its on to the endocrinologist to check those thyroid nodules. That same week we will sneak in an MRI of my spleen (which, I am still KEEPING btw..) But, for now we are in a holding pattern and it is a good place to be.
Of course, being in a holding pattern gives my girl time to think. While we wait word on the necklace from the Global Genes Project,
she is already planning our next fund-raising adventure. I am currently on the hunt for denim ribbon so she can outfiit her school in denim ribbons for “Rare Disease Day,” February 28th. And, with a few whispers in her ear from a special third grade teacher, she has begun to ask if we can “pull off a 5k run” for the Global Genes Project.
So, I put a few feelers out. We will keep you posted.
I will be practicing looking at the world through the bright eyes of my child. She sees a lull in doctors as an opportunity to spend time helping others. There has to be a bunch of lessons there.
Take a minute to breathe. Time passes so quickly. Hug a loved one. Look at the world through someone else’s eyes.
I have always known these things on some level – but Cowden’s Syndrome has brought them to the forefront of who I am.
It took my ovaries, but it gave me hot flashes in return. Fair trade?
Cowden’s Syndrome took my checkbook, and used it for copays, and parking lots.
It took my calendar – and filled it with all sorts of places I didn’t want to be.
Cowden’s Syndrome took away my peace of mind, and filled it with worry. (OK, MORE worry…)
It took my appetite. If you don’t count Cheerios, ice cream, and salad.
It took away all my comfortable clothes, and has forced me to replace them in smaller sizes that appropriately cover my fake boobs, without losing track of them in shirts that are too large.
BUT,
it gave me the means and the motivation for education and early detection.
It gave me the motivation to step forward and say, “I don’t need THESE any more.”
Because I have Cowden’s Syndrome I will not suffer at the hands of breast or uterine cancer, and I will do my damndest to make sure my little girl doesn’t either.
Cowden’s Syndrome gave me the courage to fire clueless doctors, and educate the ones who care.
I encountered an acquaintance with breast cancer today. She had on a beautiful wig, and is in the middle of chemotherapy. I felt guilty as she asked me how I was feeling. She knew of my ordeal last spring. Survivor’s guilt I think. It broke my heart to see her hurting, even though I feel she will be well again.
Cowden’s Syndrome SUCKS, in so many ways. But it is part of us now, and like anything that becomes part of you, I believe you have to yank the good out of it.
Cowden’s Syndrome has taken a lot from me, from us in this house. But the knowledge we have gained will give us second chances that some others may never have.
Cowden’s Syndrome took from my body – but in many ways it gave to my soul.
As I sat in the dentist’s chair a few weeks ago getting another bridge organized, I enjoyed pleasant conversation with my dentist. I know, that may sound strange, but really she is quite pleasant, and very talented at what she does. She is also the Mom to twin friends of Meghan‘s from her class, so we have known each other over 4 years now. She is a mom, wife, dentist, photographer, fellow blogger, volunteer, and a generally nice person to be around. I am grateful to call her a friend.
As I was getting ready to go she asked me when she could schedule me for scaling and root planing. After I had her explain the depth of the cleaning that was involved, and even after she explained WHY it was a good idea, my instinctive answer was , “NEVER!”
English: 29px Sharp top of a periodontal scaler Deutsch: 27px Scharfe Arbeitsspitze eines Scalers (Photo credit: Wikipedia)
Over the last 6 months alone I have had breast cancer, a double mastectomy, with reconstruction, and a hysterectomy. I have been scanned, had countless MRIs, and just recently completed a colonoscopy/endoscopy. To say I am DONE being poked and prodded would be the understatement of the year.
So, as I listened to her careful list of reasons why this scaling and root planing procedure is a good idea, I just wasn’t sold on the concept of ANY more pain.
I told her, “When they tell me I can keep my spleen, then I will make the appointment.” She laughed out loud. But this, this is what life with Cowden’s Syndrome has become. I am willing to celebrate being allowed to keep one of my organs, with a dental procedure that is probably quite necessary anway.
But, I feel like life in this body is about triage. I have to take care of things one step at a time.
Traube’s space (Photo credit: Wikipedia)
So, the oncologist called today about my spleen. They were comparing the ultrasound pictures from April on 2012, and November of 2011 with an MRI in August 2012. She sent it to a lot of people to look at. The answer..maybe.
Really, are you surprised?
You see the ultrasounds showed identical, medium size “hamartoma.” (PTEN Hamartoma Tumor Syndrome is the umbrella term for Cowden’s and several other related Syndromes) But, the MRI showed 2 distinct, and one fairly large “hamartoma.” The good news about these is they are benign. The problem is – if they follow the body’s tendency to grow and grow things, they won’t be able to stay there too long.
I know, you can live without a spleen. You can live without a uterus, ovaries, a cervix, breasts, and a whole host of other things. But, just because you CAN do something, doesn’t mean you SHOULD.
So, I will go back in December and repeat the MRI. While they are there they can make sure the tiny cyst on my kidney stayed tiny too.
As soon as they are done. Once they tell me it is all stable, and I can keep my spleen. I promise, I will be a big girl and get my scaling and root planing done.
At least I have a kind, gentle and pleasant dentist – and she is looking to keep things IN, not take them out!
I know I have said this before. And, I know that many of you can relate. Since being diagnosed with Cowden’s Syndrome (insert your diagnosis here…) nothing is what it used to be. I am not the same. I have changed. Out of necessity, for survival, and maybe because sometimes its good to get rocked to your core so you have to shake it up a little. Don’t misunderstand me, I am not HAPPY about the diagnosis, or its far-reaching, life altering effects. I am just saying that complacency sometimes has some troubles of its own. A little shake up (or a few major earthquakes) now and again, keep us hopping.
So, when I say to you that my diagnosis with Cowden’s Syndrome has forced my transition into being a Smart Phone user, maybe you can relate. I promise, for me the two are closely connected.
I am frugal. Have always been careful with my money. I love to give to charities, I love to give to friends, for weddings, and showers, and babies, and special occasions. You should know that my credit card balances are respectably, almost frighteningly low, and I have been known to stop and save up for the things I want. And, you won’t catch me spending $100 on jeans I can get for $30, or gleefully sending off the payment for the utility bills without a slight lament that it seems like money wasted.
When we first got cable, I only wanted one box. I resisted the DVR at first too. I lost – both times. But I didn’t care so much because Felix wanted it, and at least it was going to make him happy.
I don’t require a lot. A few pairs of comfortable sneakers, some nice jeans, and a few tops that fit me. I need a working computer, frosted cinnamon Cheerios, and an ice cream cone – often. I am content to alternate between a few pieces of jewelry. I like my house clean and neat – but other than that, it is hard for me to come up with something I want, or need, except for perhaps a few more hours in a day, and less time tied to my computer, which leads me to the reasons it might be time for a smart phone.
Now, Felix got his months ago. And I was OK with that. Again, he needed the boy toy. And, he uses it. He watches videos as he commutes from work, plays with family photos, and scaling down into just one lightweight device made his job as a climbing electrician even easier. When he first got his he said to me, you have to. I said, “No way!” I was still calculating the cost of his data plan and what it would do to our monthly cell phone bill.
But, these last few months have been a litany of medical tests and appointments for Meghan and I. We are constantly awaiting calls, and test results. And, I have found that in Manhattan, many – ok MOST, doctors will Email for convenience. Convenient – if you have access.
I can’t access my personal Email from work. Even if it gets through the fire wall, it’s just a bad idea. So I find myself daily, as I run home from work to let the dogs out – frantically checking Email and responding as quickly as I can. I also find myself waiting a lot, at doctors, at dancing school, at swimming, at PT, wasting time where I could be handling all of this.
So, my husband sat me down for “the talk.”
“Remember after your cancer in March, when I told you to order the Cirque du Soliel tickets for Disney World? Remember when you told me there was no way because the tickets were such and expense. Do you remember?”
I did remember, as I stifled a giggle. He had explained to me that now, having had the “wake up” of our lives – we were to take some chances, have some fun, and DO things we wanted to do. He reminded me that we are fortunate to be able to afford nice things, and sometimes, we need to treat ourselves to family memories. He said, “If having cancer didn’t wake you up, I don’t know what will.”
So, I ordered the Cirque du Soliel tickets last March, and we thoroughly enjoyed the show in August.
Now, he said – it’s time. Get rid of this phone.
Probably only a slight exaggeration
And move onto this one.
“It’s time you stop worrying so much about every little detail. Have a little faith. Have a little fun. You have earned it.”
He’s right. He usually is. Last night I ordered my Iphone 5.
It will take about a month. I can wait. Poor Siri will be so busy with reminders she won’t know what to do. And I can’t wait to release a little of the pressure of having to remember everything.
Cowden’s Syndrome, with all the complications it added – means that that smart phone moved from luxury to necessity. And I must admit, I am resisting calculating the new bill because even I am little excited about being shoved into 2012!
And that my friends is how Cowden’s Syndrome (even) changed my phone!
beatingcowdens 