I very rarely post twice in one day, but I am in absolute awe.
We have been somewhat private about our struggles at the church I grew up in, but I have left no mistake that we felt forced after almost 40 years of membership, to search for a church where we could worship with clear heads and open hearts.
We traveled from church to church, visiting several over the last 6 months. A few weeks ago chance, or maybe the Holy Spirit, led me into the doors of one I never expected to even visit.
We received a welcome I could not have expected. The pastors went out of their way to seek us out, to introduce us, to help us tour the church, and to give us a brief background on their mission.
They invited Meghan to a music class which she has attended weekly.
Last Sunday in church, Meghan was invited up to collect the Thanksgiving food offering.
My conversations, however brief, have been remembered and referred to. I was told we would be welcomed in every way, but that any changing of my membership from my existing church, because of the highly charged emotions would be discouraged for at least a year. No pressure just a place to offer praise.
We have a meeting with the pastors next Friday. My husband and I together, to learn more of their programming and their theology.
This afternoon I received a phone call. The pastors wanted to make sure they invited Meghan personally to Sunday School, which begins tomorrow. They wanted to invite our family to join theirs at their afternoon cookout.
The call lasted 3 minutes. But they took the time to make it. They took the time to care. They know nothing of our struggles or our complex medical issues, or our Cowden’s Syndrome, but they care.
God’s plans are often mysterious, but my eyes are wide open so I can see where and if I am being led.
As I have said so many times before – God has been holding my hand through this journey. I am surrounding myself with supportive people – of all faiths.
“Sometimes your blessings come through raindrops, sometimes your healing comes through tears. Sometimes a thousand sleepless nights are what it takes to know you’re near. Sometimes trials of this life, the rain the snow, the hardest nights, are Your mercies in disguise.”
I know I have said this before. And, I know that many of you can relate. Since being diagnosed with Cowden’s Syndrome (insert your diagnosis here…) nothing is what it used to be. I am not the same. I have changed. Out of necessity, for survival, and maybe because sometimes its good to get rocked to your core so you have to shake it up a little. Don’t misunderstand me, I am not HAPPY about the diagnosis, or its far-reaching, life altering effects. I am just saying that complacency sometimes has some troubles of its own. A little shake up (or a few major earthquakes) now and again, keep us hopping.
So, when I say to you that my diagnosis with Cowden’s Syndrome has forced my transition into being a Smart Phone user, maybe you can relate. I promise, for me the two are closely connected.
I am frugal. Have always been careful with my money. I love to give to charities, I love to give to friends, for weddings, and showers, and babies, and special occasions. You should know that my credit card balances are respectably, almost frighteningly low, and I have been known to stop and save up for the things I want. And, you won’t catch me spending $100 on jeans I can get for $30, or gleefully sending off the payment for the utility bills without a slight lament that it seems like money wasted.
When we first got cable, I only wanted one box. I resisted the DVR at first too. I lost – both times. But I didn’t care so much because Felix wanted it, and at least it was going to make him happy.
I don’t require a lot. A few pairs of comfortable sneakers, some nice jeans, and a few tops that fit me. I need a working computer, frosted cinnamon Cheerios, and an ice cream cone – often. I am content to alternate between a few pieces of jewelry. I like my house clean and neat – but other than that, it is hard for me to come up with something I want, or need, except for perhaps a few more hours in a day, and less time tied to my computer, which leads me to the reasons it might be time for a smart phone.
Now, Felix got his months ago. And I was OK with that. Again, he needed the boy toy. And, he uses it. He watches videos as he commutes from work, plays with family photos, and scaling down into just one lightweight device made his job as a climbing electrician even easier. When he first got his he said to me, you have to. I said, “No way!” I was still calculating the cost of his data plan and what it would do to our monthly cell phone bill.
But, these last few months have been a litany of medical tests and appointments for Meghan and I. We are constantly awaiting calls, and test results. And, I have found that in Manhattan, many – ok MOST, doctors will Email for convenience. Convenient – if you have access.
I can’t access my personal Email from work. Even if it gets through the fire wall, it’s just a bad idea. So I find myself daily, as I run home from work to let the dogs out – frantically checking Email and responding as quickly as I can. I also find myself waiting a lot, at doctors, at dancing school, at swimming, at PT, wasting time where I could be handling all of this.
So, my husband sat me down for “the talk.”
“Remember after your cancer in March, when I told you to order the Cirque du Soliel tickets for Disney World? Remember when you told me there was no way because the tickets were such and expense. Do you remember?”
I did remember, as I stifled a giggle. He had explained to me that now, having had the “wake up” of our lives – we were to take some chances, have some fun, and DO things we wanted to do. He reminded me that we are fortunate to be able to afford nice things, and sometimes, we need to treat ourselves to family memories. He said, “If having cancer didn’t wake you up, I don’t know what will.”
So, I ordered the Cirque du Soliel tickets last March, and we thoroughly enjoyed the show in August.
Now, he said – it’s time. Get rid of this phone.
Probably only a slight exaggeration
And move onto this one.
“It’s time you stop worrying so much about every little detail. Have a little faith. Have a little fun. You have earned it.”
He’s right. He usually is. Last night I ordered my Iphone 5.
It will take about a month. I can wait. Poor Siri will be so busy with reminders she won’t know what to do. And I can’t wait to release a little of the pressure of having to remember everything.
Cowden’s Syndrome, with all the complications it added – means that that smart phone moved from luxury to necessity. And I must admit, I am resisting calculating the new bill because even I am little excited about being shoved into 2012!
And that my friends is how Cowden’s Syndrome (even) changed my phone!
We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor! Because, that my friends, is how we roll. Except today wasn’t a high-tech specialist or a visit to Manhattan for testing. Today was kind of ordinary. Today we were at the orthodontist.
Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.
We have been with the orthodontist since she was 7. At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated. At 7 she had a rake put in her mouth. A fixed appliance, similar in concept to a palate expander, but different. A rake is there to break the tongue thrusting habit. She wore that fixed appliance for a year, and a removable nighttime retainer for another year. All the while the progress her teeth and her smile made were remarkable.
So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in. I asked when, and was told, “soon.” It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months.
Quickly doing the math I asked, “She could have them off before Junior High?” Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.
He looked at me a bit stunned and asked, “How old is she?”
“She just turned 9.”
He looked at the XRays again. I asked him if she was too young. He told me her chronological age really had nothing to do with things. Her dental age makes the decisions. Her mouth is ready he told me.
So, we made the appointment and then sat in the car for a long time. She asked me question after question. She was curious about my braces, and her Dad’s experience as well. She wanted to know why I thought it was so good to have them off before 6th grade. She told me she was scared, which I said was normal. She asked me why everything was happening at once. Why was her body growing so much, why is she ready for braces, why can’t she just take a rest? She understands really, she always does. But sometimes she needs the pep talk that we have to press on. She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.
“One more thing Mom.”
I stopped and turned around to look at her.
“Don’t tell anyone at all. Don’t blog about it. Don’t tell your friends. Don’t tell anyone. I want it to be a surprise.”
She might have just as easily broken my fingers, and barbed wired my mouth shut. But she was clear. This was HER secret – not to be released without her permission. And while I may have flubbed once or twice along the way, on the whole I did a darned good job.
She taught me (another) lesson that day. When I share my life here, I am also sharing hers. And she wants, and deserves a say. We have talked a lot since then about whet I can and can not write about. She puts very few restrictions on me, and I appreciate that – but I respect each one. This life is hers too. And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.
So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS. I write about breast cancer and my mastectomy and hysterectomy. I write about her worries about cancer. I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal. I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.
I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.
And then, I let her read. If it bothers her. It comes out. Its only fair.
But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness. She gets it. She always does.
So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.) There were some tears then. Some frustration about wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….
And there was the life lesson for today. For both of us. We stayed calm. We had another long talk about how “everyone has something” even though it seems she has an awful lot. We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her. That young lady never seems to complain either. Maybe that’s why Meghan respects her, and is drawn to her. Kindred spirits? We know quite a few.
We got the bracket fixed. We headed to Party City. We got a bargain on matching Halloween costumes. We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November. Slowly, the smile crept out.
We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth. Soon they will become natural, like all the other bridges she has come to and crossed in these nine years.
Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.
She is sleeping peacefully, all content pre approved. 🙂
Another day off, another mission accomplished. One day I would just like the mission to be a day in our PJs!
I think its Ok to say we have character. Lots of people I know have character. That’s why I spend time with them. I know lots of people who have traveled through their own trials and persevered. We are all unique, but the same in our drive and ambition.
Why is it then, that not all of our doctors have character? Some do. They work so hard. Even when they are throughly confused, their wheels are always turning. They return my calls, and my emails. Instead of thinking, “This Mom is NUTS!,” they think,”What is wrong with this kid, and (more importantly) how can I help her?”
We have some of both kinds of doctors in our lives right now. In all honesty, I have had better luck overall picking from the doctor pool than Meghan. Even with some bumps in the road, my problems, not withstanding the Cowden’s Syndrome – have all been fairly easy to diagnose and treat so far.
Meghan on the other hand has run in circles since she was a baby. We have had this kid at a flow chart of professionals, and while we have gotten some significant and important answers along the way, I find it almost inexcusable that she is still suffering with random, unexplained fevers and headaches. I find it disgraceful that she has been on a rotating cycle of antibiotics about every 8 weeks for over 2 years and no one but me is screaming about it. I find it downright scary that she needs 100mg of Celebrex a day to move, and 1600 mg of acyclovir to keep the Herpes Simplex infections at bay.
So, when we went to see our beloved pediatrician today, who is deeply bothered by this recent fever/headache thing, I brought with me an EMail exchange I had shared with a doctor at a world-famous NYC hospital. Sparing you the exact read, after summarizing the last 2 weeks, and sending lab work, as well as a brain MRI with an unusual finding, this doctor responded that he felt there was “no necessary follow-up, and he is sorry Meghan isn’t feeling well.” After reading this aloud to my soft-spoken, proper, pediatrician, his calm reply was, “He is just LAZY! And you still NEED to find her a neurologist.”
Interesting to contemplate that this doctor from this world-famous hospital was being called “Lazy,” but I have never heard my pediatrician speak ill of anyone. Now I doubt the man is lazy in the literal sense of the word, but in the “problem solving, figuring out the mysteries of what makes my unusual patients tick” way, I guess he is.
Meghan’s pediatrician is one of a small group of doctors we are blessed to know. They are few, but they love her like she is their own. They believe her. They validate her. And they won’t stop pushing until they figure it out.
So, while I get tired from running to doctor after doctor… tonight I am grateful for the men of character. The ones who take seriously their oath, and who remember why they became doctors to begin with.
Ok. So that normal was short-lived. Glad I enjoyed it while it lasted.
I am trying the “don’t worry” thing. I really am. Truth be told. I stink at it. It’s true. I try and try, but in the end – epic fail.
We finished the antibiotics Tuesday from the hospital/fever/headache thing 2 weeks ago. She was on the mend, so I thought.
I know our schedule has been busy. Too busy for her. Too many things to do, every day leads to exhaustion. My body struggles with exhaustion, but hers just can’t cope.
So this morning we went for the follow-up blood work. The one to make sure the White Blood Cells and platelets came back to normal. The we headed to Queens to visit my in-laws. Two dogs, Meghan, Felix and I.
I the middle of a nice visit I noticed her resting her head on the arm of the chair. Then, she asked for food. She told me she wasn’t feeling too good so she must be hungry. We fed her. Then it all started to crash and burn.
She loves her baby cousin Connor. But, she started backing away, not wanting to get too close to him. Then, there was the red line across the eye. Finally, “Daddy will you rub my head?”
And from there it all went downhill. A cold cloth and Daddy’s magic fingers did little to relieve the pain. In about 15 minutes time we were back on the Belt Parkway heading home.
My mind was racing. She slept for a bit in the car, and I just kept trying to figure out a way that this could make sense. Not even just to me, but to someone – anyone.
The last time we were in for headaches the pediatrician told me to get a neurologist consult. Well I am working on it tonight. God and the power of the internet have me linked up with some Cowden’s patents. The goal is to find a pediatric neurologist who is competent and already has heard of Cowden’s.
That is of course if the immune system stuff is even Cowden’s related. Then again at this point I am going under the theory that all this is related in some way.
Settled into bed with Advil and a 102 fever at 7pm. It promises to be a long night. I will decide on a neurologist and have a few numbers ready to call during my lunch on Monday. Priority.
We will see the ped at 3:30 Monday, and hopefully not before.
Worry -it’s what’s for dinner.
Maybe I should stop looking for the old normal. It happens so infrequently anyway. Maybe it is all about the new normal.
It’s Friday. And, the only medical office we have been inside of since after my colonoscopy Tuesday is the dentist. That’s a perfectly normal place to go, and the dentist is kind, and painless too. Three days. One appointment. And a “normal” one at that. Plus, no cavities.
This is exciting in my house. Everything we do seems to be peppered with a test or an appointment. So when it’s not, it’s time to celebrate a brief glimmer of normal.
Today I had appointments – but they were for the betterment of me, in the most psychological way. Nope, not a psychiatrist. I had a gel manicure, my eyebrows done, and then Meghan and I went for haircuts.
To top it off, while she went to a well run, fun “God squad” meeting, I snuck out for dinner with a really cute guy who makes me laugh a lot. We even have matching wedding bands! 🙂
So, tomorrow is the blood work to see if the WBC has begun to rebound. Tomorrow for the blood, Monday for the pediatrician. Tuesday for the fabulous Dr. Jill at PT, Weds. for another doctor… to be named later.
But for today – my little girl and her one of a kind necklace seem to be on the up side of healthy. She is about to go to bed, and close out today with her award-winning smile.
Today. Today is good. We are here. Together. We had only fun places to be. Today I am thankful for all the people who I crossed paths with.
Trying not to worry about tomorrow. Lord knows tomorrow has enough worries of its own.
A few days ago I wrote about my dog Lucky – biting through the cage. Well she got her wish, and she is a free dog now. Free to roam around my house, lay where she wants, and drink when she wants. She is much calmer and happier now. It doesn’t take much to make her happy.
Why then can I not take her lead? Why am I living in the cage of my own thoughts?
My husband, he has the right idea. He worries only when it is absolutely necessary. I worry about making sure the stove is turned off. He worries when the house catches fire. Maybe it’s a male/ female thing. Maybe it’s my controlling OCD. Who knows? What I do know is he is MUCH healthier than I am mentally.
I am still quite sane, but admittedly neurotic. Some say it was inevitable after the year we have had. I think it stretched back much farther. I could say parenting a not so healthy child has done it, but if I am honest, I think I have always been this way.
I just read a Facebook friend’s post. She talked about her brain continuing 24/7 even when she asks it not to. That’s EXACTLY how I feel.
I am sure the Cowden’s Syndrome, the mastectomy, the breast cancer, the hysterectomy, the tumors on the spleen, the cyst on the kidney, and the constant screening tests aren’t helping. And those are just mine – not Meghan‘s! We average 3 doctors a week, usually at least 2 on the schedule and a pop up. Each one seems to look, poke and prod and not offer a single answer. Then the tests lead to more tests. It’s a bad cycle we are in here. So then I spend my spare time researching – thinking maybe I can find the answers they don’t know. I end up just as clueless and thoroughly exhausted. Sometimes you have to stop biting at the cage, realize the answers aren’t there yet, and realize you have the power to let yourself out. I am “luckier” than my dog Lucky – no pun intended. I have the benefit of being able to free myself. I just never seem to get it quite right.
I am going to try that one day at a time thing again. I am going to try to concentrate on all the many things that have gone right. I will TRY to worry less when my daughter’s WBC is frighteningly low, while I wait for the retest. I will worry less about West Nile Virus, and just try to treat the 8 mosquito bites on the leg of my immune compromised kid. I swear I will try. It’s not going to be easy though.
When you see me in a fit of worry, feel free to give me a “cyber” smack into reality. ONE DAY AT A TIME!
TODAY – good things happened. I got through the baseline screening colonoscopy and endoscopy. The colonoscopy was completely CLEAN! I do not have to go back for another 3 YEARS! Beats the heck out of the every 6 months they were recommending for Cowden’s patients. Also, my CLEAN scope frees up my little girl for a while. As long as mine stay clean they won’t start screening her until she is at least 18. Breathe. Some minor biopsies on the endoscopy but the doctor is expecting a CLEAN pathology.
For me, for my daughter, for my husband, and for ALL of us who are fighting our way out of the cage. We can do it – one day at a time!
It was hard to believe it had been so many years since we were all together. It was even harder to imagine it was over 15 years since we all shared space, time, and our souls in SUNY New Paltz. It was a far cry from most of our late nights at P & Gs.
As a matter of fact , as we sat across from each other at The Cheesecake Factory in New Jersey, two of them pregnant and all of us chatting about our children, and old times -often in the same breath- you never would have imagined the amount of time that passed since we last spoke – face to face.
But the food was decent, and the conversation refreshing, and I found myself wishing it could happen more often – or last a lot longer. It hardly seemed right to get up when only a few hours had passed. But each of our lives called us away. To children, and husbands, and lives that needed tending to.
As we hugged each other, and I watched my two friends ‘baby bumps” bang into each other, I was reminded of the reality that real friendships truly do last forever. We picked up with each other as though graduation had been last week, and although there was so much more to say, there wasn’t a moment that lacked conversation.
Facebook has been a blessing for us. A way to keep tabs on each other, and keep track of the major happenings. These ladies used Facebook as a means of support for me over the last six months, when some days it seemed the sky was falling. They reached out to me – as if we were still next door neighbors in New Paltz. Facebook arranged our meeting last night. As a simple group message “Hey can we pull this off?” – and I am so grateful we did.
See in order to stay sane, life has to be about more than Cowden’s Syndrome. It has to be about more than knee pain that wakes my girl up in the middle of the night after only 4 days without her Celebrex. (At least we tried!)
Life has to be about more than infections that scare me half to death, viruses that take hold way too fast, and doctors that want to fix it all but don’t know how.
It can’t always be about tumors, and, “Are they growing or not?”
It can’t always be about the tests and the screenings, like tomorrow’s colonoscopy.
The recovery room at tomorrow’s colonoscopy site!
Those things are always going to be part of our lives – forever. They aren’t going away. That is the reality of Cowden’s Syndrome.
But the real reality, in the world where we know too well that “Everyone has Something,” is that it is necessary to make time to hug old friends. It is helpful to the soul, to relive old times, and to sometimes sit and have dinner with people who stood beside you years ago, and who have made it clear they are prepared to do the same now.
My dog Lucky is a bit neurotic. She just is. So when I came home today to find she had chewed through half her metal crate – literally lifted the bar off at one point, I wasn’t all that surprised.
Lucky (the black one) and Allie, playing together.
It got me to thinking though. No one, or thing – really likes to be caged. The “girls” get plenty of time to roam free when we are home, and when we are not, but we have to make the best decision for them each time.
What struck me thought tonight, when I saw a piece of the metal crate literally bent off, is exactly how much she doesn’t like the crate, and how much she wants out.
We feel like that sometimes here – about PTEN, and Cowden’s Syndrome. We feel like we are stuck, in a locked crate. We want to run free, but the daunting tasks that lie ahead make it seem like an “Escape from Alcatraz” might be necessary.
Meghan’s fevers this weekend scared me. I know her immune system deficiency may stand alone from Cowden’s, but that doesn’t make it any easier to process. And, I swear if they were not related before, they feed off each other now.
The fever was gone Sunday night. It made another showing of about 102 and then that was it. She stayed home Monday with our friend Patty, and was treated like the princess she is. By the time I came home Monday she looked so much more like herself.
We went to the pediatrician Monday night. He wants me to contact her oncologist and get a referral to a neurologist to address the intermittent headaches she has been having. Her oncologist who Emails quickly, got a set of all the recent labs and the recent brain MRI. She is going to get back to me. I have no idea where we will fit one more doctor in – but we will figure it out.
So this morning, we woke up feeling ready to go. She responds so well to antibiotics, that we were seriously on the mend.
After she brushed her teeth she complained her gums were bothering her. I didn’t see much.
Tonight she said it was much worse. There is a growth on her tongue. Right on the edge. It grew today. During the day. No idea why. No clue what to do about it. I don’t know but it reeks of Cowden’s and its NASTY overgrowth – of everything.
I guess I will deal with it tomorrow, right after I call on the throat culture and find out if we need to see the ENT.
Someone told me today I looked tired. Not me.
If you need me, I will be biting my way through the crate, getting rid of one bar at a time. Maybe Lucky las the right idea.
beatingcowdens 