Sunday night, coming home from a swim meet, Meghan outlined her goals. Among them included, “no surgery for a whole year.” To someone who hasn’t had 4 surgeries in the last 12 months, that may not seem quite that important, but to Meghan it was at the tip-top of the list.
Over the last several years she has spent more time living in “recovery” than just living.
She dropped 16 seconds total off her event times at this month’s meet, and 17 last month. Insanity. Except to a young lady who is now growing into herself, and her abilities.
She wants to swim. Hard and often.
She wants to soar academically – no average under a 95 will do for her.
She wants to act, and sing, and be on stage.
She wants to participate in her youth group, and retreats, and live her faith.
She wants to raise community awareness of Cowden’s Syndrome and rare diseases.
She is on the move all the time. I know, because I am with her. Or helping her stay organized. Or transporting her at least.
This weekend we drove 200 miles. Today at least another 60. LOTS of time for car chat. Lots of time to get to know each other well.
Sometimes she drives me crazy. Sometimes I frustrate her so badly she wants to scream. Sometimes she does homework, reads, or works on projects. But, lots of other times we talk. About anything and everything. And as much as I hate traffic, and long distances, I’ve learned to make the most of our time in the car. I’ve learned to appreciate my captive audience, with the realization she won’t be in my back seat forever.
As a matter of fact after today’s appointment, she could easily be in the front seat. All the time. At a very trim waistline, and a height of almost 5 foot 7, she presents as YEARS older than she is. Which I sometimes have to remind myself when I am busy expecting her to have it all together. Sometimes she still needs me to help her along.
Today was the knee surgeon. Six month follow-up. He sees the shift in the patella. He feels the scar tissue, and the clicking. But, he said, she can wait. She can wait until she’s ready before he cleans it out again. With Cowden’s it’s a fine line. How much pain can you deal with? Because every surgery will lead to an overgrowth of scar tissue which carries its own issues. Drag your feet. Know when enough is enough.
Next we will have an MRI to check on the AVM. As long as that’s stable, we should have a bit of time. A bit of time to do some things besides recover. A bit of time to be a bit more like a “normal” busy 12-year-old. Well, like a “normal” 12-year-old planning a fund-raiser for more than 150 people with her favorite Disney entertainer… But, hey, she dreams big.
Tomorrow she goes to another doctor. And about this one I just pray. A lot.
In two weeks I get to remind myself I have Cowden’s with an unplanned visit to my plastic surgeon to question a poorly behaving painful prosthesis.
Plenty to preoccupy the mind. In our immediate and extended family.
One day, one event, one obstacle at a time.
I did start my Christmas shopping. After 2 years of holiday sadness, I am craving joy, and celebration. I am craving the anticipation of the birth of the baby Jesus. I am determined to remove myself from the holiday hustle and bustle. I am determined to set my mind right. Because none of us ever know. Really. And there is no promise of tomorrow. Really.
But organization makes me happy. And it’s about being happy. And making the most of it all. All the time.
Hyper-vigilance. Although Wikipedia is not my favorite source for all things – it defines this quite well.
Hyper-vigilance is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect threats. Hyper-vigilance is also accompanied by a state of increased anxiety which can cause exhaustion.
When we were first diagnosed, and I had a long conversation with a Mom who had been where I was many years before, she told me we would be OK, but we would need to be forever vigilant. Understanding now, what I didn’t then, is that Cowden’s Syndrome requires more than vigilance, it necessitates hyper-vigilance.
The two are very different. One is a state you may be in sometimes, when it is necessary. The other is a place you never leave. Ever.
I don’t compare illnesses, in the sense of one being, “better, harder, easier, more difficult, more painful…” than another. That to me is silly. I know LOTS of people who suffer on a regular basis. I can’t say I would want to trade places with any of them. And, I can only speak from my lens.
My lens is that of a mother, who is watching her child battle through a chronic (FOREVER) illness with potentially life-threatening, and definitely life-altering ramifications – while battling that same illness myself.
I don’t view us as “sick” people. As a matter of fact we are regularly called,” The healthiest looking sick people…” But, we aren’t “well” either. It gets complicated. Quickly, and often.
Hyper-vigilance requires me to do everything I perceive is in my power to try to stave off the tumors and vascular anomalies looking to create havoc, chaos and confusion in our bodies.
Hyper-vigilance necessitates monitoring food intake. Avoiding food allergens/sensitivities because they cause vomiting and severe GI distress. That means NEVER leaving the house without food. JUST IN CASE. It also means spending weekends cooking so that “quick meals” come out of my freezer and not a drive through window. It means providing the most intense nutritional products I can find to fuel a body that would otherwise be running on empty. It means driving far and long to get the right food at the right stores. It means making sure the sweet treats that are allowed are not full of dyes and preservatives because they compromise further a documented severely compromised immune system.
Hyper-vigilance means watching the medication intake. To make sure we don’t forget an antiviral. Because when we do it sets off a tirade of events that are hard to bounce back from. It means typing the list, and checking it over. It means teaching her to know her medicine on sight. It means avoiding everything we don’t need and willingly taking things like probiotics to help that fragile stomach. It means knowing that when you have chronic viral infections they are ALWAYS waiting for an “in.” It means leaving NOTHING to chance, and having spare pill cases in every bag with extra of everything, especially digestive enzymes. It also means spending HOURS AND HOURS trying to make the mail order medication people get it right. Which I sometimes think is just not ever going to happen.
Hyper-vigilance means scheduling the doctors. All of them. All the time. It means making sure all the screenings, for all the ridiculous number of cancers we are at an increased risk of developing, are done on schedule. It means often following up on those appointments, with imaging studies and more appointments. And then repeating those “unclear” imaging studies, again and again. It means getting blood work done, often. Usually at least once every 4 weeks. It means talking to the endocrinologist and problem solving with him when he admits “it doesn’t make sense” as you strive to help your girl at least feel better. It involves medication adjustments. Making sure it’s taken on an empty stomach, and every single day. It means there is always a list nearby of who needs to be scheduled next. It’s right alongside the pile of bills that have inevitably been messed up by someone, and now need receipts faxed and hours on the phone to be kept out of collection agencies.
Hyper-vigilance is hearing the symptoms every day and trying not to panic. When there is a headache, sharp and sudden, or a pain in the knee, or the back, or the shoulder, or the leg, and you know your kid is NOT a hypochondriac as some others would like to think, you have to listen, sort, and mentally file all of these. Hyper-vigilance is keeping track of which ones repeat and which ones go away on their own. Hyper-vigilance is being very aware, but never panicking. It’s a fine line.
Hyper-vigilance is Physical Therapy. As often as we can fit it in. Because something always hurts. When one foot is 2 sizes smaller than the other because the treatments for the AVM in the knee cut the blood flow to the foot, so the bone stopped growing, you end up “off sides”. The hip, the shoulder, the knee. They all hurt, and it won’t get better. It will only get managed. For as long as we can fit in the PT.
Hyper-vigilance is also finding balance. It’s also searching somewhere for “normal.” It’s making 4 swim practices a week, often on raw nerve. Because she wants to feel normal. She wants to compete. And let’s be truthful, she wants to win. It’s about me never really leaving the grounds of the college 12 extra hours a week because we are always one step away, and sometimes a half-step from “just in case,” and “what if.” It’s getting her to drama, because she’s skilled there. And she fits in. And the teacher is awesome, and the kids know her for who she is. It’s about balancing the schoolwork, and doing her best, while teaching her not to beat herself up. Too much stress is no good for anyone. Especially when you have this random tumor growing condition that preys on extra stress.
Hyper-vigilance is remembering I have this “Cowden’s Syndrome” too. It is making sure I am at my best so that she is at hers. It’s remembering that I sport fake silicone boobs as a constant reminder that I’m not invincible and cancer found me. It’s remembering they were worried enough to take the uterus and the ovaries too. It is working hard, at my job, and my life, and showing her it can be done. But it’s also about letting her know I get tired too. Because in those moments she sees that she is normal. And yesterday when I struggled to even walk up a flight of stairs, I saw the concern in her eyes. And she picked up the vacuum. And she helped. It’s teaching her to take care of herself by some days letting her take care of me.
Hyper-vigilance is walking. Me. Walking 4-5 miles a day almost every day. Because my bones are already crapping out. After 30 years on thyroid pills and 3 years after a hysterectomy, at 41 I’ve been placed on warning. It’s necessary for me to take good care of me. To fuel my body properly. To limit the junk in. To respect this body because it’s already got a lot going against it.
Hyper-vigilance is making decisions in the moment. It is having to say no, we can’t go. It’s not being able to tell people in advance. It takes away from advance planning, even the fun stuff. Because life with chronic illness is day by day. It makes me feel badly, often. So sometimes I avoid making plans. I don’t even like to volunteer for too much because I just don’t know whether things will be ok that morning.
Hyper-vigilance can be very isolating.
It’s hard for some people to understand. And I get it. Because a few years ago it might have been hard for me to understand too. It makes people uncomfortable that this thing we have is never going to get better. People feel better when things can be fixed. But it can’t. We are not going to grow out of it. It’s here. It’s part of us. Like the ‘elephant in the room.’ But, we understand other people’s problems too. We get the myriad of health issues that surround us. And we empathize. And we don’t need to be sheltered from them. As a matter of fact, we might like it is sometimes people shared their worries with us too.
Hyper-vigilance is exhausting. And today I took a two-hour nap. Because my throat started to hurt. And my body was giving me all the warning signs that I had pushed a little too far. I shortened the walk. I stayed in mostly.
It’s like training. For real life. Because there is not an event at the end, that will finish with a medal and a sense of accomplishment, and a new goal. My forever goal will be to keep us healthy, and to keep the Cowden’s Syndrome at bay. The only path to this end is hypervigilance. And even then, just like in life, there are no guarantees.
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
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 now
I’m starting over
A year ago this evening I was pacing the floors. Making sure Meghan was packed for school. Triple checking my hospital bag. Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.
I was right.
I hadn’t arrived at that moment in my life by accident. It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor. Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body. Don’t wait till the summer – she somehow convinced me. March 5th. Get it done.
One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”
We checked in by 6 AM. I can remember every detail of the morning. It is imprinted in my subconsciousness. It may fade over time – but for now…
My brother in law called my cell phone by six. We prayed together. Then, I just focused on breathing.
Checking in takes forever. Everyone stopping in. Lots of waiting. I paced that small room so many times I swear my footprints are probably still there.
And my husband – my pillar of strength – just waited with me. When I wanted him to pay attention – he stopped and held my hand. When I wanted him to ignore me, he dutifully read comics on his iphone. I would not have wanted to be him.
I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in. Well this was not an easy concept for him. Apparently that is just what everyone does. The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.
Well I had already had a long talk with my plastic surgeon. I had no desire to have giant boobs. Nope. I was sure.
At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery. (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)
I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in. After a lengthy discussion, she agreed. It was more important for me to get right home to Meghan.
This resident was having a hard time wrapping his head around this, but finally we got the papers right. They were to put in whatever one of these fit best – preferably a matched pair.
Finally it was time to head to the operating room.
I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees. Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team. Two women who are talented, compassionate, and understanding. They gave me the peace of mind I needed right before the anesthesia. The last words I recall before I woke up – “You’re doing the right thing.”
They expected a “clean easy procedure.” After all I had had an MRI just a month prior to confirm I was cancer free.
Recovery from anesthesia isn’t my forte, although I have improved with experience. I got to visit with my sister, and enjoy my husband.
The peace I felt after this surgery can not be understated. I was so relieved. The storm had been calmed. It was done.
I left the hospital about 28 hours later on March 6th. I couldn’t wait to see my girl. The drains were still in place and they would stay for another week, but the hardest of the hard work was done.
So, on March 5th – my boobs are officially a year old. At least that’s the day I adopted them.
And what a year it has been.
A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer. Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?” It was done. I was OK. By the Grace of God alone – the cancer was out before it was ever a problem. And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment. Without Meghan, and without her diagnosis. I would have never proceeded with such an aggressive surgery. God gave me my little girl, and spared my life. We will use that gift as often as we can.
The weeks of recovery went smoothly, with lots of help from mom.
And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now. So, in May we went back. This time at least everything was benign.
This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan. It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)
It included Grandma’s fall, and ongoing recovery.
It included circumstances that caused me to step away from my church, and blessings that led me to a new one.
This year I laughed deep laughs, and I cried gut wrenching tears. I got re-acquainted with old friends, and I met new friends in support groups online.
This year I learned there are some benefits to small silicone boobs… (with no nipples!) I got to go bra-less for the first time in YEARS!
This year we vowed to make a difference,
This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.
This year was only the beginning of the rest of our lives.
One year without my old boobs. One year with the new and improved CANCER FREE version. One year of countless blessings. One year of boobs that will never sag!
I should be sleeping. It is 1:30 AM. This is my second post for the night, because I can’t stop and sort out the overflow in my head any other way.
Maybe you have been following the saga of my poor spleen… or not. Either way, my spleen has issues. Or, rather, my doctors have issues with my spleen.
The first time the hamartomas were detected on my spleen was probably when I had an abdominal ultrasound as a screening after my diagnosis. When I saw my oncologist in August, she wanted an MRI done of the spleen so she could have a basis for future comparison. When she called me with the results in August she was ready to send me for a surgical consult, based on the significant size of the 4 hamartomas (courtesy of Cowden’s Syndrome – aka PTEN Hamartoma Tumor Syndrome) on my spleen. Since the spleen itself is only about 11 cm long, the hamartomas across the top equaled or exceeded the length of the spleen. At the time, I was coming off of a double mastectomy in March, and a hysterectomy in May. She was forcing my hand to schedule a colonoscopy (which I did,) but I pleaded with her for 6 more months with my spleen. Reluctantly, she agreed.
So, when I had the car accident and I was sent for an abdominal ultrasound, that started the whole process over again. The oncologist looked at the report and ordered an MRI. I went for the MRI and tried to set up the surgical consult. The surgeon, who is a surgical oncologist, thinks the spleen needs to come out, but he wants me to see a different surgeon to see if it could possibly done through laproscopy first. But, he wants to talk to my oncologist before he will set up an appointment to even evaluate my case, and my oncologist spent last week in California at a conference.
So, instead of February… it is now December, and I am waiting. Waiting to have the fate of my spleen determined.
Well meaning people say to me, “Don’t worry – you can live without your spleen.”
Sometimes well meaning people should smile and nod more, and speak less.
Yes, I KNOW I can LIVE without my spleen. You can also LIVE without your boobs, your uterus, your cervix and your ovaries. You can LIVE without your gall bladder, and your appendix, and your thyroid, and one kidney, and part of your liver or lung too. But, just because you CAN do something, doesn’t mean you should.
I am thinking of asking for a fake fish for Christmas. One that will remind me I have been gutted like a fish this year. One that will also remind me that, no matter how many body parts they take, you have to KEEP SWIMMING!
Monday or Tuesday I will talk to a doctor about my spleen. I would love to keep it. I just think we have gotten along nicely for the last 39 years. And, its mine. But, I will listen to the doctors (after I ask them EVERY hard question I have,) and I will do what is best, and safest.
Heck, I didn’t go through all of this past year to be beaten by my spleen….
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.
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.
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.
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.
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.
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.
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…
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…
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.
It is not the critic who counts;
not the man who points out how the strong man stumbled
or where the doer of deeds could have done them better.
The credit belongs to the man
who is actually in the arena,
whose face is marred by dust and sweat and blood;
who strives valiantly;
who errs and comes short again and again;
who knows great enthusiasms,
the great devotions;
who spends himself in a worthy cause;
who at the best, knows in the end the triumph of high achievement,
and who, at the worst, if he fails, at least fails while
so that his place shall never be
with those timid souls
who know neither victory or defeat.
The whole idea of living with a chronic disease really just stinks. I mean there are a lot of things, in a lot of people’s lives that just stink, and there are ever so many that I would never for a moment trade places with. But, that doesn’t change the reality that this genetic disorder, this PTEN mutation, this COWDEN’s SYNDROME, is now part of our “real life,” and I would like to send it back.
Well meaning people, people I love with all my heart, and people I am indifferent to, ask me all the time how we are. I know they would love to hear that we are great. They’d like to hear that all is well. I could tell them that there are no deep dark fears of tumors or cancers, or surgeries keeping me up at night. I often lie and say, “great” forgetting to mention the scary headaches, the joint pain and the anxiety that hide behind the beautiful “braces covered” smile of my little girl. I sometimes say, “we are hanging in there,” which some days means we won’t spend three hours at a doctor’s appointment today, or I am not waiting for a phone call, or a nerve-wracking test result. Some days it means my heart is in my throat – but I don’t know how to tell you.
I remember when I used to love to eat. Lots of food – carbs, junk food, candy. I used to have an appetite, and enough energy to exercise too. I remember several sizes ago when I had a closet full of clothes. Now I have enough pants and shirts to get me through. I remember when my old boobs filled out my tops.
I sometimes think to myself, “this is not my real life.” Raw fatigue. Nerves. Stress. Balancing a full-time job, and the normal demands of parenting with the full-time job of managing this disease. Has it really only been a year that life has been this complicated? There were always issues. But a year since the diagnosis. The confirmation that these risk factors belonged to us. That they were real, and pressing.
And yet to look at us – you would never know. You wouldn’t know of this other life we lead. This “elephant in the room.”
Everyone has something. I have said it a million times before, and I will say it again. It could ALWAYS be worse, and there is ALWAYS something to be thankful for. I am grateful for that reality check.
When I don’t call you back for a few weeks. Or, when I start sending cards late, and losing track of dates. Don’t worry too much. We are treading water here. We will get by. Just cut us some slack. Some days it just doesn’t all fit, and some days there is just not enough wine.
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.
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.
I just returned from 9 days in sunny, HOT Florida with my family. We had our 5th annual trip to Disney to celebrate Meghan‘s birthday August 9th. I now officially have a 9 year old!
The trip was great, and I will have loads of things to share over the next few days, so bear with me. But this is the thought I had to share first.
I spent 9 days in Florida and I didn’t wear a bra – not once.
Now I was never huge. Prior to my mastectomy I was a B cup, C if I had gained a few pounds or wanted to make myself feel better. So, when I was discussing my reconstruction options for the new boobs with the plastic surgeon, she was a little surprised when I told her I wanted immediate implants instead of tissue expanders.
She told me that just isn’t the way they do things anymore. She said she wouldn’t have enough skin to maintain my existing size. So I said, “OK, go smaller.” Now she was a pretty small woman herself, but she still spoke to me for quite a long time, wanting to be sure I understood what I was saying.
I did. You see my surgery was as much about my daughter as it was about me. I knew that tissue expanders required fills. I knew that that meant more trips to the doctor. I knew that it meant an additional surgery for the implants, and I knew several people who had suffered enormous infections with them. I also knew I had to get home to my daughter and get about the business of recovering – quickly. So, if that meant I had to go down to an A cup – so be it. It supported the weight loss all the recent stress has brought.
After the surgery I wasn’t unhappy at all with the “new” girls. Once healed I got used to them, and grew more confident. So, when I went shopping for vacation I got a little daring.
All those shelf bra tops. the yoga ones, and the skinny strap camisole tops – well I had a few, and I bought a few smaller ones. Then, I tried them on with no bra. THAT was something I never dared to do before. I jumped, I bounced. I checked. Nothing moved. And, since I lost my nipples to the surgery – nothing stuck out.
Well I spent 9 days in Florida, with minimal hot flashes, helped along by my moisture wicking tops, and no bra.
Best part of all, I am sure NO one had a clue.
After all that has gone on, if I don’t find the bright side, I will crack up. So here it is, just for you – the shots of me Bra-less in Walt Disney World!
This year I am obsessed… well with quite a few things, but one of them is not (directly) medical.
This year I am focused on a high quality, everyone looks their best, everyone is smiling, family photo.
We are a family of three. Immediate family that is. (Not including our furry friends Allie, and Lucky.)
Our extended family includes his parents, two sisters, a brother-in-law, and three nephews. On my side, there are my grandparents, (Mom’s parents, my step-dad’s Mom, and my father’s mom) as well as my mom and dad, my father, my two sisters, a brother-in-law and a half-brother, and two nephews. That list doesn’t begin to address aunts, uncles and cousins galore on both sides. Yes, they are all family, but reality will never put them all in one place at the same time, and there are probably some blessings to that. While I love them all dearly, I often say you shouldn’t mix drinks, or extended family!
We have been fortunate enough that we have been able to travel to Walt Disney World in Florida for the past 4 summers. We will be making it a 5th this year. We save and budget all of our “fun” money for a Disney vacation because for their extremely high pricing, we get “allergy safe” meals wherever we eat, and unlimited access for Meghan’s push chair, which she often needs when we travel more than about a half mile. It is the best week of the year for all of us.
It is usually the week of Meghan’s birthday. It is doctor free, no needles, just be “normal” week. We take LOTS of pictures. Usually it is of Meghan alone, or of one of us with Meghan. They are great photos and I treasure them. The few photos we have gotten of all of us in Disney usually have us in sweats, and sneakers – SWEATING. This year we are going to go to the photo studio, and I don’t care how much it costs. Meghan and I have dresses picked out, and matching sandals too. (We just need to pick out something for Daddy who after deciding “stress eating” isn’t the way to go, is down over 20 pounds!)
There are so many reasons why I am focused on this photo. It is FUN to focus on something FUN.
I have been smacked in the face with the reality of the frailty of life. In March I was given a “second chance” as I was told the breast cancer that was “sneaking up on me,” unbeknownst to any doctor – was gone. Gone after a “prophylactic bilateral mastectomy.” Gone before it had a chance to wreak havoc on my life. Gone. But I will not forget the words of my surgeon, “If you had waited until July to do the surgery you would have likely been in a fight for your life.” Instead, I will go to Disney World.
Not lost on me is the reality that 15 years ago next month my Mother finished up treatment for bilateral breast cancer. She is strong, a survivor, still here, enriching our lives.
Not lost on me is the cancer scare AGAIN in May, as they worried about a malignancy in my uterus, before performing a hysterectomy.
I am vividly aware every moment that the thyroid specialist who monitors Meghan’s “precancerous” thyroid nodules, took back his invitation to come back in a year, and said, “we better see you in 6 months. One nodule is starting to dominate.”
I am painfully aware every moment that after one of the strongest, and longest battles I have ever witnessed, we lost GGPa in June to cancer.
My stomach, and my heart hurt for the victims of the senseless attack in Colorado this week. Families out to see a movie – life ended so tragically.
I love to look at pictures. In an age when people have stopped printing them, I have shelves FULL of albums. I love reliving memories, and smiling at al the good times. The albums remind me, that no matter how tough things seem, there ARE LOTS of good times.
Cowden’s Syndrome, PTEN mutation, cancer, NOTHING can take away the memories or the good times. So since 2012 has been quite the year, we will take a “fancy” family photo. One that will hang somewhere in our house and remind us that we can endure the tough times. One that will remind us to hug each other tightly, and to kiss each other when we leave, and to never stay angry over nonsense.
One that will remind us that we are defined by our spirits, and not by the sum of our parts.