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.
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.
Maybe that should be the slogan for 30 something (ok closer to 40, I know) women who have been thrust into menopause. Kind of like the equivalent “Put on your big girl panties…”
Estrogen loss and menopause. Two more things I can thank Cowden’s Syndrome for, as I learn all the side effects connected with both – one at a time. At least I can relate to… well, not really ANYONE in my age bracket. But that’s Ok… I am getting used to it.
Fortunately it hasn’t been THAT bad yet, but I have found myself a little sweatier than normal, and I have been known to stick my face in an air conditioner lately while throwing an ice cube down my back.
I am not one to complain too much, but really, the reality of this one took a little time to catch up with me.
Yeah, I know it had to go. Blah, Blah Blah… Cowden’s Syndrome, uterine cancer, suspicious polyp. I get it. Oh, and your ovaries are way too big, too many cysts, let’s take those too. Sure – why not?
Nothing would have changed if I had asked all the questions in the world. It had to be done. And I am learning sometimes it is better not to know everything at once.
So, I am hearing words like calcium supplements, bone scan, and osteoporosis, while I have friends my age going for 20 week ultrasounds. Don’t misunderstand me. I never wanted another baby – but it just seems wrong. Like I have warped into a different reality.
That’s what these last few months feel like sometimes. A bad sci-fi movie. I am the girl who gets all her body parts cut out, one or two or three at a time.
I wonder how it ends.
And, most importantly I hope the movie theater has air conditioning. It’s HOT in here!
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!
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.
Apparently this has become like a sleeping pill to me. This is the place I go at night, to sort out all the emotions of the day before I can try to find some rest. I can’t imagine that will do anything to gather more readers, but it is certainly helping my sanity.
I am trying to find the balance, for both my daughter and myself. The balance between being properly scanned and “on top” of all our countless risks, while not letting doctors take over our lives. Because the truth is, they don’t know a whole heck of a lot about Cowden’s Syndrome. Most of them don’t care to find out, and the few that do, well – I will let you know. I think we have 3 between us that seem truly willing to learn.
So today I took Meghan to the vascular surgeon. The same doctor that has embolized the AVM in her knee 4 times. The same doctor who in February, right after the 4th procedure, handed me the name of a doctor in Boston. “We just drained 30 ccs of blood from under your daughter’s kneecap. I don’t know why it was there. You should go meet with this doctor and see what he has to say. He will likely want to put a scope under her kneecap after she has healed.”
After ascertaining it wasn’t an emergency, but not something we should sleep on, we met Dr. K in Boston over the April break. He examined her, without the CD images that I had pleaded with the NY doctor to send up 3 weeks PRIOR to our appointment. He said he wanted to keep an eye on it, and to repeat the MRI/MRA in 6 months.
So we did. And on Monday the PA who had been in the OR with the surgeon and my daughter 4 times tried to tell me there was nothing in her knee.
Today, armed with a 2 page report and the paper the surgeon gave me in February with the Boston doctor’s name on it, we went for our visit.
I am still confused by the number of inconsistencies that happened in one small room. The surgeon began by taking back his concern from February and telling me he just wanted the Boston doctor to get a baseline on Meghan “just in case.”
Which, I though to myself, I am sure is true because I definitely would have made a 5 hour drive 4 weeks after a double mastectomy if he was so nonchalant.
Then, he held to his story that there was nothing in her knee. Even as I pointed to an obvious bump he told me it was nothing. I questioned him on the report, the one that says there is a stable 2.8 x0.7cm mass. He told me he reviewed the CD and disagrees with the report. Even as I told him I found the report to be strikingly similar to the December report, he offered to sonogram the knee to confirm “nothing.” On sonogram he said there is a gathering of tissue (do I need to define mass?)
So, he said to bring her back in 6 months. They will reevaluate. Then we will repeat the MRI in a year.
Have I mentioned I cry when I am frustrated?
Well somewhere about 10 minutes into the conversation, when he was busy changing his story and disagreeing with the report I got overwhelmed. Shouldn’t have done it, but I cried. Fatal mistake. I now look like a complete ass, when that is his job. And he does it better than I ever could. He actually had the nerve to lecture me that I would make my daughter upset. I still can’t believe I took that. (Still stewing!) AND, I shot Meghan th evil eye to keep her quiet and remind her of her manners.
I HATE the crying thing. I have been working on it for years. UGH!
You know I wasn’t crying because i was sad. I actually was really relieved at the thought that no surgery was necessary. I was frustrated by arrogance, lack of clarity, and overall lack of concern for my daughter the whole person.
See, no one else knows the tears she sheds about this damned knee. The things she can not participate in, or the modifications she has to make just to avoid pain. She does them effortlessly. Every day. No one knows except me. And it kills me.
So when we were leaving I tried to find the bright side. I said, “See, at least you won’t need knee surgery this year.” To which my far too bright, soon to be 9 year old responded, “I am not sure. To me surgery makes it worse, and not having surgery means no one is going to do anything to make it better. Guess my knee is going to feel this awful forever!”
Now I could have tried to tell her that maybe it will be better by itself, but I respect her way too much, because as much as I would love to believe it – I don’t.
AVMs are difficult to deal with anyway. When you combine them with a PTEN mutation, they are ridiculous to control.
Just one aspect of a multifaceted disease.
I really wish I had kept my broken genes to myself.
So I waited, again, all day for the phone call about the knee. I put in my reminder call at 10 this morning and again at 4pm. I was told they would look it over after their patients.
The call came at 5:20. It was from the surgeon’s PA who does know Meghan and has sat in on her cases from the start. The doctor doesn’t make the phone calls- ever. I must admit for some reason I did not tell the PA that I was holding a copy of the report as she spoke to me. I really wanted to hear what she had to say.
Actually what I REALLY wanted, was to hear, “You have a stable AVM.” Let’s look at it again in 6 months. I would have been jumping up and down. I am beginning to like ” 6 months.”
That is what I was ready for – but this is what I got…
“We reviewed your daughter’s MRI and it is normal.”
NORMAL?
“Yes it is a normal MRI.”
DO YOU MEAN THERE IS AN AVM THERE THAT JUST ISN’T GROWING?
“No we don’t see an AVM.”
THEY TOOK 5000 IMAGES (and that this point I wanted to shout that the damned report cites a 2.8 x0.7cm mass, but I didn’t) ARE YOU SURE YOU LOOKED AT ALL OF THEM?
“Yes, there is no evidence of an AVM. I know you wanted Dr. K in Boston to review these images..”
NO, I NEVER EVEN KNEW THERE WAS A DR. K IN BOSTON UNTIL YOU TOLD ME TO CONSULT HIM! SHOULD HE REVIEW THE IMAGES?
“That is up to you.”
WELL WHAT ABOUT THE FACT THAT THERE IS A PALPABLE MASS ON THE INSIDE OF HER RIGHT KNEE ABOUT THE SIZE OF A PEANUT?
“Oh, you should bring her in so we could look at that.”
IT HAS ALWAYS BEEN THERE!!
“Bring her in so we could look at it.”
(In my own mind…you have a CD ROM with 5,000 images. You have a report that says there is a mass, but yet somehow you pointing to it and saying, Yep that’s a mass is going to make this better?)
I walked for about 2 hours after this call. It took that long to shift my emotions from irate to angry.
Once again with my back against a wall, I will call tomorrow for an appointment.
Another wasted day in NYC with its pricey parking garages, and doctors that are supposed to really give a crap. Another day of summer burned for nothing.
Starting to feel like I am in the Twilight Zone.
Thanks PTEN. Thanks Cowden’s Syndrome. I like you about as much as Dr. R. – and right now that isn’t saying much!
Meghan and I have a lot of “deep” conversations. More than you might expect an 8 (almost 9) year old to be capable of.
Today she was wondering why we have to have Cowden’s Syndrome. Why is our PTEN gene broken?
Well, I said to her, everyone has something to deal with – and this is what we’ve got.
She thought for a minute, trying to figure it out herself, and then said, “What do you mean?”
“No matter where you go in the world, in every city and town, in every street, in every country, on every continent – EVERYONE is dealing with SOMETHING.”
I told her there is a saying that goes around “If everyone could toss all their troubles into a circle, and choose which ones we wanted, we would likely take our own back.”
Almost indignant she said,, “Why would I take back Cowden’s Syndrome? It stinks.”
“Yep, but would you trade it for the family that doesn’t have enough money to buy food, the family that lost their house to a fire, the family where the parents have lost their jobs, the family where the parents aren’t in love, or are divorced, the child who can’t have any pets because her sisters are allergic, the family whose Mom or Dad died, fighting for the freedoms we celebrate today?”
It doesn’t take much for her to “get it.” That’s why I love her so much.
Christmas 2011
“There are kids without dogs,” she said. “Lots of them. And I really love Allie and Lucky.
There are kids without their own room, or even their own house.
There are kids whose Moms and Dads don’t love each other.
Some kids have other diseases where they have to go to the hospital even more than me.
Ist Holy Communion 2011, with GiGi and Pop
Some kids don’t get to know their grandparents or their great- grandparents, like I do.
I get it Mom, I think I do. But, still it seems like some people have no worries, no problems at all.”
“Those are the people I worry most about Meghan. Those are usually the people whose hearts hurt. They are often alone, or insecure, or feeling unloved. Trust me, EVERYONE has something.”
Fireworks!
“I guess you were right Mom. I don’t like having Cowden’s Syndrome… but I wouldn’t trade our life for anyone’s.”
“Iam glad – me either. Our “thing” to handle is medical, and we will get through it – together. Tonight we celebrate our country, and the freedoms it was founded on. We celebrate the soldiers who fought for our freedoms, and the ones that continue to fight. It is those freedoms that allow us the ability to battle whatever “thing” plagues our own life.
He has held my hand this past year alone, as we watched Meghan be wheeled into surgery for the 9th time.
![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 