After 12 years of marriage, I still feel fireworks for my husband!
When we were vacationing at Disney World, we stopped one night to see the beautiful fireworks show at EPCOT. My husband captured a few great shots, as I sat with Meghan and watched the show in awe. It was such a wonderful, peaceful, “normal” night, and I relished every second.
I watched my husband, practicallly laying on concrete to take photos – partially because he loves photography, but also partially because he knew I was photo obsessed this trip – and I couldn’t help but think how much I adore him.
Those wild days of dating and hot romance have toned down into a sense of companionship, but there is still plenty of passion in our lives. He can give my stomach a flip with a touch, or a hug; with a quick kiss or a slow one.
I loved him soon after we met. I loved him more when we married, but I never could have imagined I’d be this in love.
He has held my hand this past year alone, as we watched Meghan be wheeled into surgery for the 9th time.
He lovingly drained my drains after the mastectomy. He held me, and reassured me. He told me I was still beautiful, and even helped me believe it.
And, when it came time for the hysterectomy I spent many nights in his arms listening to him repeatedly explain what I already knew – “You are more than the sum of your parts!”
From the start of this whole Cowden’s Syndrome mess, his ONLY concern has been keeping us safe and healthy. He is my biggest support system, my cheerleader, and my safety net.
I have been blessed in so many ways, but I truly feel this PTEN mutation, helped strengthen an already solid marriage.
He goes back to work in a few hours, and I couldn’t be more sad. My happiest times are when we are a family of three.
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!
We are headed home tomorrow from a wonderful family vacation. I will have lots of lovely things to tell you about the fun we had and the great people we encountered. Unfortunately there are still some ignorant people… even here, who do not realize you can look perfectly healthy and still be “sick.” There were a few times… especially today when the monorail operator gave us an attitude when we asked for a ramp into the handicap accessible car (even though her chair is clearly marked as a wheelchair.) People can be so frustratingly ignorant. She notices now, and it bothers her, but she is awesome, and she tells me she hopes they never know what it’s like because no one should feel this way. So here it is one more time…
If I had a dollar for every time someone directed that comment at my daughter or I, I would be retired – a wealthy woman.
We don’t “look” sick. As a matter of fact we look alike. A lot alike. It’s probably due to the fact that I, having the ‘honor’ of being the first in my family known to have the PTEN mutation that causes Cowden’s Syndrome. To look at us, you would see a vibrant mother and daughter duo – 8 and 38.
When I push her through Disney World in her modified wheel chair each summer, I get the stares that say “spoiled.” When I pushed her through the Susan G. Komen Breast Cancer walk last fall so we could support my mom, a survivor, someone actually said “Why don’t you get the ten year old out of the stroller?” Actually she is 8, and she would…
I love my family. Especially when we get some time away from the nonsense of daily life and just get to enjoy each other.
Vacations are necessary. Big or small, they are critical food for the soul.
Our life isn’t easy, but I am extremely proud to be the mother of a graceful, articulate and well mannered young lady who is learning to take a lot in stride. She isn’t perfect. None of us are, and there will be growing pains as she defines who she is, but I am already proud to be her Mom, and I know that pride will continue to grow.
I have spent the last 5 days amongst thousands of people and there is not one who I would willingly trade places with. I have seen kids…oh so ill and the anguish in their parent’s eyes. I have seen whiny, bratty kids, with parents who I am glad not to know. I have seen kids who struggle, making every attempt to fit in, in a world that is overloading their senses. I am grateful for our struggles, they have made us who we are. I do not want anyone else’s.
It is nice, and necessary to spend a few days with no doctor’s appointments.
I am glad to have a Mom to watch my dogs and give them the royal treatment for me.
I miss writing every day. This bog has been therapeutic for me.
I can not stand the touch screen on my daughter’s IPad…and likely won’t write again until we are safely home.
A friend of mine posted this on her Facebook page today. She is the kind of person who every day finds something to be grateful for. I love that about her. Those are the people worth surrounding yourself with!
Today was the kind of day that could have gone either way. Three doctors appointments back to back in Manhattan. Meghan and Felix home together. I was a bit bitter about wasting a day.
But I got a spot in my favorite lot, and got in a nice walk. Then I met a new dermatologist who studied me very closely. She KNEW what Cowden’s Syndrome was! And, as she took my medical history about the breast cancer, and the hysterectomy, she said “you look awfully good for the year you’ve had!” I had to smile. She understood the rarity of Cowden’s well enough to call the resident in to look at my gums, and what I have come to learn are “classic” Cowden’s marks on my palms and feet. The resident is studying melanoma specifically, so she let her “double check” and ask me all sorts of questions. What a treat to not feel like a freak and be in a room with people trying to learn. Even more of a treat to hear that all is well, and I don’t have to come back for 6 months.
I made it to doctor number 2 – the endocrinologist with time to spare. So, she took me early. An exam, some conversation about the past few months, (through NYUs new system where all the doctors are linked,) some talk about a bone density test in the next few month, a script for blood, and an invitation to return in 6 months. Wooohoo! 2 for 2!
Early for doctor number 3, the breast surgeon, I had to endure a bit of a wait. She however, is THRILLED with my healing, and said I don’t need to see her for a year! (We will do 6 months just so I stagger her with the plastic surgeon, one every February, and one every August – but still! :-)) She asked about my new oncologist, also an NYU doctor, who had contacted her to discuss my case.
Am I starting to feel like there is a competent team of doctors out there?
So, I made exactly the same appointment, same three doctors, February 19th. How nice to come into the city once and park once, and get three done at once. Maybe… just maybe… we can start to get our lives back, little by little.
I was home by 2. Enough time to spend the rest of the day with my family. Who cares that the black car doesn’t start. We will take care of that another day…
When I saw that picture tonight I had to smile. I could have had a really crappy day – but I didn’t.
The line rings in my head. The internet gives me the artist’s name as “Dishwalla.” The song doesn’t make a whole lot of sense to me, but then again the whole religion thing can be very confusing.
I have a belief in God, and faith that there is a higher power running the show here. In many ways that confidence keeps me sane. I mean, what would be the purpose of it all?
Don’t get me wrong, I don’t believe that we are selected to suffer. Not with cancer, tumors, genetic disorders, or anything of the sort. I do however believe that God can give purpose and meaning to our lives. If we seek it, we get confidence to endure the tough times, and purpose. A “share your experiences,” be helpful in every way you can, “pay it forward” kind of purpose.
What I haven’t sorted out, even after all these years, is well, what are the rules?
I mean, I was raised Lutheran. I was baptized, confirmed, married, and baptized my daughter in the same church. I spent my youth in that church. Survived high school with close friends there, and always enjoyed the connection with the people. I believe in the theology I was raised with, and I love the people I worshipped with for so long. But I no longer believe in that church.
The minister has been there for almost 2 years. Long enough to know the people in the congregation he serves. And yet, I have gone through one of the most emotionally tumultuous years of my life and he has never extended a hand. We had a long talk about it. It yielded nothing. He doesn’t care. So, I haven’t been to worship there for months. I would be lying if I said it didn’t hurt me. It pains me deeply. But to me worship has to be about God, and it has to be led by people of God.
See, to me it doesn’t matter if you are catholic, Lutheran, or any other of the million religions out there. I believe for the most part we all serve the same God. What matters to me are the underlying values that go with being a person of faith.
Are you kind to others? Are you tolerant, and understanding of differences? Do you judge others, or do you leave the judging to God? Do you extend a hand to a friend in need? Do you lend an ear when someone needs to talk? Do you hug your loved ones? Do you value, truly value the gifts of your family, friends, and those you are yet to meet?
Those are the questions I ask myself as I interact with people each day. And I ask those questions of ME, not them. It is my role to be there, to be a person of faith, to share my love for others. I don’t think it has as much to do with what building you walk into, as it does with how you live your life.
My brother-in-law is a Lutheran minister. And, while I have at times not always agreed with him on everything (who does?) he models what a Christian leader should be. He has been there for me, as I try to sort out the many thoughts in my head, and his words have provided me some clarity on some tough issues.
So, I know I guess, what I need. Now the question is where to find it? I made a promise when I had my daughter baptized that I would teach her. I do, but I would like so much to have a “home” base where she can be comfortable again. This is all so confusing to her, and yet even as I watch, her faith grows.
We tried another Lutheran church. I am just not feeling it. We are floating right now – seeking. But God has a plan. Of this I am sure.
You see I am confident that the same God who sent the angels to watch over my daughter and I. The one who blessed us with this Cowden’s Syndrome diagnosis (yes, you read “blessed” because as I see it, if she had not ever been diagnosed I would have died of the breast cancer that was hiding inside of me,) will stick by us, no matter where we travel.
I will continue to do my best to live the life of a woman of faith. I previously sharply defined myself as Lutheran. Now, maybe Christian is just a better term.
Forgive my ramblings, and I know this is a touchy topic. But if you are reading this – drop a comment. For lack of a better phrase,
“Tell Me All Your Thoughts on God…” I really want to hear them.
Stained glass at St John the Baptist’s Anglican Church http://www.stjohnsashfield.org.au, Ashfield, New South Wales. Illustrates Jesus’ description of himself “I am the Good Shepherd” (from the Gospel of John, chapter 10, verse 11). This version of the image shows the detail of his face. The memorial window is also captioned: “To the Glory of God and in Loving Memory of William Wright. Died 6th November, 1932. Aged 70 Yrs.” (Photo credit: Wikipedia)
My daughter found this photo the other day. She was searching “funny dog photos,” and stopped when she reached this one. She came to me and said, “Mom, I think you will appreciate this.”
I don’t know whether I was more impressed by her ability to know that I would in fact get a good chuckle out of this, as it seems to be the story of our lives, or by the photo itself.
Ingenious really. People do this. They create these photos, and some seem silly or insignificant. Until there is one photo, phrase or saying that you really relate to. Then somehow it all makes sense.
As we turn the corner of summer into August, I know we still have a few weeks of vacation left, but I start to reflect.
School begins for me on September 4th, and for Meghan on September 6th. When we share our summer vacation stories, what will we tell?
We snuck in some fun. There were some play dates that were a blast. There was a trip to the beach, even if only for a few hours. There was swim class, and dance class too. There were books galore – read just for fun – far after the three she “had to” read.
But this year there was no camp. And it was strange. I missed the schedule a bit, but it was a necessary break – for both of us.
Practical reasons wouldn’t have allowed much attendance at camp. We were at too many doctors.
Darn Cowden’s Syndrome. Check this, scan that, see this doctor, make sure that is ok. Multiplied times two it could be a full time job. But, since I have a full time job, that I missed an obscene amount of days from last spring while my body parts were being cut away – summer is for all the doctors that we can squeeze in.
Ironically, no one really answered too many more questions.
Persistence.
Before the end of August Meghan will have had 8 (very productive) Physical Therapy sessions, 3 visits to the pediatrician, a trip to the vascular surgeon, the rheumatologist, the oncologist, the geneticist, the orthodontist, our “second” pediatrician, and she will have had an MRI and 2 sonograms.
I didn’t do so badly myself. I will be able to boast 3 surgical follow up appointments, 2 trips to the dentist, a visit to a new oncologist, which leads to a visit to a GI doctor, and abdominal MRI, a dermatologist for a skin cancer screening, and a visit to the thyroid surgeon.
And those are just the ones SCHEDULED through the end of August.
Persistence.
Not sure where it will get us. All these doctors. I will get them on a nice schedule though. Start to consolidate. Double up days. Next Tuesday I have 3 appointments in a row. Why waste time?
They want us to add the cardiologist back in. Just to be safe they tell me. Everyone is so busy covering their own ***, they often miss the important stuff.
I get that the screening needs to be, and that it needs to be intense. It could be argued that this intense screening saved my life. But there is still such a need for doctors with a clue. Doctors who care. Doctors who connect the dots.
Persistence.
Although some days I feel like the dog, digging through the concrete… I do believe it will all pay off.
Actually, it already has.
So maybe it isn’t the “perfect” summer, but its a necessary one. Me and my girl…. together.
He has held my hand this past year alone, as we watched Meghan be wheeled into surgery for the 9th time.
beatingcowdens 