I was photo obsessed headed into this trip. I was determined to get a family photo. So, we headed to Downtown Disney in the 98 degree heat, and did our best in the Disney Photopass studio. We had a great time. He got some great shots. Two family shots, and one of Meghan that are just fabulous.
I won’t be showing them here. Well, the one of just Meghan may slip out, but not the others, sorry. I chose one for my Christmas card. And while I was at it, I sent it to Costco to be printed. So, I can not even believe I am saying this, but I have 200 Christmas Cards in my basement August 20th. Ridiculous confession of my OCD – YIKES. Never in all my years have I done that. But, there was the picture, all ready to go, and I figured it was the best way to keep me from showing too many people.
So, you will have to wait for that one. Instead – I will show you some of the Family Photos that didn’t make the Christmas Card!
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…
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.
I am sitting on the couch, alone. Unable to sleep because of the pain in my knee.
My left knee and I have quite a history. Pretty much told it was “arthritis” as a young one, but that was never confirmed with lab work. A car accident in 1991 banged it up and started the swelling on and off. Arthroscopic surgery in 2000 to “clean” it out, gave me relief for a few years. Now it, along with the horrendous varicose veins that plague my legs, are temporarily at the bottom of the triage list.
There are other things that we need to do first. Plus, we can’t spend our WHOLE life at the doctor.
So, when I am in my worst pain. The kind that causes me to actually ice and elevate the leg, and I start to feel sorry for myself I look at my daughter’s face and find my perspective.
I will be 40 in a little over a year. My joints have had some time to wear and tear. She will be 9 in a week. She can’t run or ride a bike without pain in her knee. She deals with a mass almost 3cm x 1cm intertwined in the side of her knee.It is always there. Even on the “good days.” She lives with he reality of the AVM that will continue to exist- to grow, and then be worked on, likely to only grow again.
As I climb the ladder closer to “middle age” thinking in terms of pain and management for the “rest of my life” is less scary. Then there is my girl.
Soon to be 9 years old. Gluten, dairy, soy allergies. Pancreatic insufficiency,chronic herpes simplex infection, immune system deficiency, early puberty, Cowden’s syndrome, gall bladder removed, tonsils and adenoids removed (and now growing back), lipoma removed from her back, excess gum tissue removed from her mouth, precancerous thyroid nodules, and an AVM that even after 4 surgeries just won’t quit.
Yet she finds plenty of time to laugh and smile every single day, and precious little time is wasted complaining about anything – from the one who could complain all day.
Life isn’t fair, but I am going to sit here with my ice pack and reflect on the fact that God is good – all the time. And He gave me one heck of a sweet gift in my little girl.
So, what do these three have in common? Give up? I bet a few of my Cowden’s Syndrome friends could guess…
They all can regenerate tissue that has been removed!
Except the first two tend to do it in a much more productive way.
I had heard tell that lymphoid tissue (especially the thyroid and tonsils) could regrow – especially in Cowden’s Syndrome patients. (It makes sense in a way, PTEN is a tumor suppressor gene that is broken, so cellular overgrowth is common.) But, I chose to ignore it.
Sometimes ignoring things for awhile allows you to deal with other things.
When Meghan had her tonsils and adenoids COMPLETELY removed in May of 2008 she was in the middle of a 12 week strep infection. Three months of antibiotics, and they were still pulling “heavy positive” cultures every 2 weeks. By the time they were to be taken out she was admitted for several days of antibiotics prior for fear of rheumatic fever. She was a chronic, almost constant strep sufferer.
Then for about 2 years – nothing. No strep.
I don’t remember the first time it came back. It was about 2 years ago. A full year before I ever heard of a PTEN mutation, or had any idea what Cowden’s Syndrome had in store for us. I thought it was odd, the strep coming back without the tonsils, but I chalked it up to a rotten immune system.
Slowly the cases have become more frequent. It is almost constant. We don’t leave the pediatrician without a throat culture and a script for an antibiotic. Not all the cultures come back positive, but you can tell. The food avoidance, the tough time swallowing, the swollen glands, the puss in the throat. You just know.
Lately it has been about once every 3 weeks. Way too many antibiotics to be good for anyone, but strep is way to serious to ignore. So, we keep treating, and wondering.
Today we had a routine visit to the oncologist. I mentioned the strep. She looked in the throat. She said, “Have you ever considered having her tonsils out?”
Photo found on the Facebook Page “Perpetual Optimism”
Isn’t that just the truth?? Goes along with the idea that “Everybody has Something.” Now if we could all just find a positive way to channel it.
Not always so easy. I cried today. I finally found a nice oncologist who takes my insurance. I saw her on Tuesday, but she wants me to get right on scheduling the colonoscopy. So I called to set up the appointment with the GI doctor and the first appointment was the day after our vacation. As I hung up the phone cried – overwhelmed by ANOTHER doctor, ANOTHER appointment. But it was my very smart Meghan who said, “Mommy if it is going to make you cry, just make it the next week. You can still go, just a little later.” I rescheduled.
My girl is in bed. Sick and feverish. We ducked an ER visit tonight, and am hoping to do the same tomorrow. Along with the Cowden’s she just has a rotten immune system.
Who knows what tomorrow will bring, for any of us?
Tonight I will not be angry about the past, the diagnosis, the syndrome that has taken so much of our time, freedom, and spontaneity. I will instead be grateful. For the geneticist who cared enough to find me an oncologist when I couldn’t. For the pediatrician who has called 3 times since we left his office at 2.
This past year has changed us, for sure. Cowden’s Syndrome has transformed us into different people. But I will never look back at this last year with eyes of regret or sorrow. I look back with gratitude. For the health I have, for the friends that have stood by me, for the new friends I have made, for my family.
Constantly changing, none of us are ever the same. The question is WHAT do you want to change into? I know what I pick…
This cartoon is on the front of Meghan’s 4 inch medical binder. We have sometimes decided whether or not to keep a doctor by their reaction to this TRUTH!
It is late. I should be asleep. Morning comes fast and it is already after midnight. I just can’t seem to find a way to unwind.
I just had a long chat with a ‘new” friend. That helped a lot. But still here I am, trying to get these racing thoughts out of my head before I rest.
I saw a new oncologist today. The geneticist insisted I have one to follow me and one for Meghan. Except I was having a hard time finding one who didn’t think Cowden’s Syndrome was contagious. (Ok, perhaps I exaggerate, but they weren’t anxious to see me.)
So the geneticist sent out an Email on Tuesday to some of his friends. By Friday he had a name for me, (which means the genetecist is a KEEPER!) of a doctor IN network, and I met her today.
She is lovely. Of course, by already having the double mastectomy and the hysterectomy, I have made her job much easier. Now she gets to push me to the fun stuff. Next up- colonoscopy, and kidney MRI. So tomorrow I will call to get the GI appointment, while they work out the authorization for the MRI.
And all the while I will mourn a bit for the summer that wasn’t meant to be. This was more, a necessary doctor “catch up period.” I think by the end of August we will have at least 25 appointments done between us. And those are just the ones scheduled right now.
So, just when I start to get whiny and cranky about wanting some alone time to shop, or some fun time to swim, I remember. Were it not for the work of the angel on my shoulder, that pushed my “prohylactic blilateral mastectomy” in March, I would have likely been spending this summer prepping for cancer treatment.
So, we still get our trip to Disney, and there is always NEXT summer…
I spent the last hour preparing for Meghan’s oncologist visit on Friday. We haven’t seen this doctor for months. There have been a few things going on. So, I faxed her 32 pages of what we have been up to. She wanted to review it before the appointment.
I posted the cartoon because I had her binder out while I was preparing the fax. I laugh every time I read it because even after all these years it is still true. Even with our diagnosis of the PTEN mutation, and Cowden’s Syndrome, even with the precancerous thyroid nodules in Meghan, and her early puberty, she still has pain. Every day. And not one of these doctors that we take her to can tell us why.
I thank GOD every day for her stamina, and her spirit and her spunk. She is my love, my reality check, my perspective, my reason for being. I feel displaced right now, from my church, my comfort zone – but not from God. Even in the midst of all the chaos and uncertainty, I have a husband and a daughter that are beyond compare. God has us in the palm of His hand. We are blessed. And it WILL be OK!
I was photo obsessed headed into this trip. I was determined to get a family photo. So, we headed to Downtown Disney in the 98 degree heat, and did our best in the Disney Photopass studio. We had a great time. He got some great shots. Two family shots, and one of Meghan that are just fabulous.
![Many simple species, such as the star fish, have the ability to regenerate severed appendages. [©Jupiter Images, 2008]](https://i0.wp.com/topics.info.com/image/400x200/can-animals-regenerate-parts-of-their-bodies.jpg)
beatingcowdens 