Justifying Our Existence

Published on July 7, 2016July 7, 2016 by beatingcowdens2 Comments

There was a post that showed up in my news feed this week from http://www.themighty.com. Read The Secrets of People with Chronic Illness here

I can’t seem to shake some of the thoughts from my head.

As I write, school ended for the summer 9 days ago. In those 9 days we have seen 4 doctors between us. There are 9 more SCHEDULED in the month of July, including a biopsy for Meghan on the 22nd.

And, while I did take some time over the weekend to reconnect with some dear friends, and I have accomplished a few mundane tasks like routine car maintenance, the vast majority of every moment of those 9 days has been spent justifying my existence.

Fortunately, I have enrolled Meghan in a theater camp where she is from 10-4, spending some time with kids her age. Of course, the wear and tear on her body, even after only 3 days is evident. She struggles with pain so badly. On her feet, determined to fit in. Determined for me not to say too much. Sometimes I have to let her go. I have to let her try. I have to let her decide. But, it hurts. It hurts her, and it destroys me to watch her battle with her body. I watch her put that game face on in the AM, and not take it off until after swim practice follows camp. No one will ever tell me she is anything but driven. But, no one would ever know to watch her…

Usually by this point in the summer my work bag is unpacked, washed and tucked away. Often my lesson plans for September are mostly framed out. I am yet to take the list I frantically formed as I packed my room the last day of school out of the bag.

Instead, the yellow legal pad sits near my computer. I write, and cross out, and rewrite, as I call, obtain records, set appointments, and clarify tests required by various doctors. I rearrange schedules to allow for coverage for Meghan as I trek to my own appointments at the most inconvenient times.

On the 18th I will meet a new plastic surgeon, as the old one no longer accepts our insurance. I never imagined needing a new plastic surgeon only 4and 1/2 years post op from the mastectomy, but it seems I do. I’ll wait until I meet him to elaborate on that… Sometimes, although not often, I do feel like this…

I can often count on 4 hours minimum round trip for the 10 mile trek. Never mind the cost. We just don’t even add it up. Instead, we thank God for our jobs and the insurance we do have.

I received a phone call yesterday from a lab that was running insurance information to obtain testing for Meghan requested by one of her doctors. Except it’s not covered at all. $16,000 they said. I, who denies my child nothing politely said, “we’ll find another way”. And we will. Because that is just insane.

I’ve sent 3 emails to the office manager of the office doing her procedure on the 22nd. I simply want to know what date to leave free for the follow-up. I know there will be one, and I want to plan a few summer adventures in the time that my fish will have to be out of water. I also asked for the pathology from her December procedure. For about the 8th time. Just keep adding checks and dates to the list.

When things get really bad, like with the bills I’m fighting in collections, they get a folder of their own. The SUPER troubling places, like the mail-order pharmacy, have a notebook.

We do our best to stay upbeat. We count our blessings regularly. We know it could be worse. We know the anguish others suffer far surpasses our daily struggles. But, no matter how much we focus on a positive attitude, and believe me we do, it does not decrease the pain, both physical and emotional. The struggle is real. Whether we like to admit it or not.

I reached out to our genetecist this week. Darling man said he would always help, and didn’t want us to waste a trip on him. I told him I was having trouble with my voice. I’ve been getting very hoarse for 8 weeks or so. No infection. Three allergy meds on board. But, I do have Cowden’s Syndrome, that tumor growing thing I sometimes forget belongs to me too. And I have a history in the neck. A 3.5 pound lipoma in 1988, and multinodular goiter on the thyroid in 1993. Both removed. Both benign. But…

He referred me to a head and neck surgeon. I finally mustered up the courage to block out at least one more day of summer, and call for an appointment. I was met with the inquisition on the phone. I never got past the receptionist.

“This doctor is a head and neck SURGEON.”

“Yes, I know he’s a surgeon, I was referred for consulation.”

“Well, he doesn’t just SEE people, you need a diagnosis and a referring doctor.”

“I have both. C-O-W-D-E-N Syndrome. A mutation on the PTEN gene that causes benign and malignant tumor growth. I was referred by my genetecist, also a doctor at your hospital.”

“Well, what tests do you have? He will want a report, a CD, something…”

Sigh. I just don’t have the fight in me today. “Ok, you win. I’ll find someone else.”

“Come back to him when you have a diagnosis.”

Whatever. Just whatever. Sometimes I get a little tired.

Thats when I shake it off with a quick walk.

I emailed the genetecist back. I’ll wait. Again.

I have this pool in my backyard. And plenty of people I’d like to reconnect with. And some lessons I’d like off my plate. And a book I’d like to read.

I’ll get there. In the mean time, I’ll be at my computer. Emailing. Arguing. Advocating. Communicating. Researching. Justifying my existence, and

#Beatingcowdens with whatever it takes.

4 Doctors and a Dog Surgery

Published on July 4, 2014 by beatingcowdens2 Comments

Before the school year closed my principal told my daughter to do whatever she had the urge to this summer. Knowing she was a good kid, she understood his meaning. He told her to play hard, and not worry about getting hurt, or hurting.

When I shot him a look, he laughed and ignored me. Speaking right to Meghan, (referring to an event at school last June where she climbed a rock wall and ultimately needed hand surgery) he asked her if she would climb the rock wall again. She said, “Definitely!”

He smiled at her, knowing he had left his mark in the just over a year she spent at our school. Her confidence was up, and she knew the satisfaction of completing a task, and sometimes even winning – far outweighed the physical consequences that simply seem an inevitable consequence of being her.

And yes they are all about the same age, mine's just REALLY tall! — And yes they are all about the same age, mine’s just REALLY tall!

Turns out that very conversation was replaying in her mind as she was first to cross the finish line in the “Fun Run” this morning, held annually in memory of my cousin Meghan, her namesake. The pleasure in her eyes outweighed all other things as she held it together long enough to get in the front door before she asked for ice.

Reminding me today as educators we shape lives in ways deeper than the classroom. I am grateful…

Meghan needed this morning. As a matter of fact we needed it – so badly that I think even the rain knew. And maybe my Dad, my cousin’s “Uncle Tom,” was able to push those clouds out-of-the-way for a while. His angel wings are 7 months strong today. I think we got a special favor.

It’s hard to believe we’ve only been out of school for a week. My head is spinning.

Monday was the rheumatologist, full of confusion, still perplexed by pain without swelling that plagues so much of her body. We spent hours, and arrived home minus a copay and with little to show for the trip.

Tuesday morning as we prepped for the GI, fortunately a local appointment, I got a call from the vet. “I know Allie is scheduled to have her teeth cleaned tomorrow, but we have a cancellation. Can you bring her today?” All about getting things done, I got the dog in the car and dropped her off for a dental cleaning.

Of course, I left in tears because as tough as I want to say I am about the dogs… I am who I am.

So when they called me a bit later to tell me she would need 5 extractions, my heart almost stopped. But, there was little choice so I consented.

We headed to the GI and had a pleasant visit there. It’s always easy when things are going well, and generally the stomach is so much better since that stint in the hospital in May that we are clearly headed in the right direction. We left with an appointment in 6 weeks, and told we could slowly, and carefully start reintroducing some of the foods stripped from her already restricted diet after the diagnosis of severe gastritis.

I picked the dog up a bit later that night. And her pain medication, and her antibiotics, and as I was leaving even full of relief to see her, it was hard to tell what was whimpering louder, Allie, or my Visa.

Wednesday another local visit, this time to the orthodontist. And instead of getting the news that the braces are ready to come off, she left with more rubberbands. The initial projection of having them removed in February seemingly a distant memory, and more conversation about her teeth and how “unpredictable” they are. Why not? So to make sure that they don’t move too far in the wrong direction – we get to go back in 2 weeks, then in 4. We’ve got time I guess.

Thursday, after feeling confident that the dog was on the mend, we left for the endocrinologist in NYC. A somewhat productive conversation at least led to a mutual agreement that the synthetic medicine may not be working for her. Her fatigue, I was told, “may not” be associated with her insanely elevated blood levels. We’ll get the labs on Monday. Two more 6 weeks cycles for the levels to regulate. Then we try something new. 12 weeks is a long time to look at continuing to feel less than your best, but at least we left with a more open-minded doctor than when we started.

“This is getting old.”

I’ve heard that phrase a few times from my normally happy, easy-going kid. At 10 years and 11 months she knows chronic pain, needles, surgery and waiting better than anyone should. When she asks about my childhood, and I tell her that I also went to quite a few doctors, (although not as many as she does,) she tells me I am “lucky I didn’t know I had Cowden’s Syndrome.”

And as I am left to ponder what it must be like knowing more about genetics and your broken PTEN gene than you might ever want to, I think about how hard it must be. The thoughts that go through her head, the level of her vocabulary, her insight. So much to absorb, so much maintenance. She gets that she’s lucky in some ways, but overtaxed in others… it is so easy to forget that she’s not even 11.

That is why mornings like this one have to happen. That is why she has to sometimes taste a little bit of victory, when she feels like the challenges might swallow her up. That’s why she has to run as if she has no pain. That’s when she gets to be a kid.

This was the worst of it – this week, for doctors. This was my worst scheduling job by far. On the 14th she has one and I have one. Then on the 15th I have 4. (Genius!) And after that things lighten up considerably.

This week I settled some paperwork that has been lingering. I fought over medication with the pharmacy. I began the process of organizing a few very chaotic things.

Today we got to see some family. Meghan got to hug three great grandparents, two of which are in their mid 90s! We got to chat and to eat and take a break.

Tonight we will sit with a sweatshirt and watch the sky for fireworks.

Tonight I will thank the angel who moved the clouds away this morning.

Come on summer – we are READY!

Transitions

Published on March 28, 2013 by beatingcowdens2 Comments

Transitions.

It seems they are happening all the time, probably for everyone, but this week we are really feeling them.

When the week started and I loosely reviewed our schedule for the week Meghan was flat out disgusted at the number of appointments we had. She is tired of doctors. I can’t blame her. So am I.

Watch this. Scan that. Come back and see me about that… UGH.

Transitions.

So when she asked me to stop making every vacation full of appointments, I tried to explain to her that with two people with “Cowden’s Syndrome,” and a whole pile of “every 6 month” appointments, it is almost impossible. And then when I looked at the tears in her eyes I promised to try. “I just want a little time to be bored!” So I got a jump on our summer appointments. So far I scheduled 12 from June 27 to July 16. I have used only 6 days to do it. There is one day with 4 appointments, two days with 2, and the other 4 each have their own days. Now, as long as no one looks for any follow ups… maybe we can plan to have a somewhat normal summer. At least I can dream

Transitions.

She is also tired of homework. Even from teachers with the best of all intentions. She is tired of the stress of the upcoming State exams, even as I work to downplay it. She was so excited this week when I told her she could read whatever she wanted – whenever she wanted – without needing to write a summary. You would have thought I gave her candy. She used to love everything about school. Now the best I get from her is that she likes her teachers. What are we doing to these kids?

Transitions.

Her thumb still hurts. Injured at dance on Monday. Its been 3 days. Seems like it is going to linger. It isn’t – or doesn’t seem to be broken, but she is done dancing. She told me yesterday. She just wants to get through the recital.

Transitions. Things are ever changing.

First it was soccer – too tough on her body. Now its dance. Sometimes she can hurt herself just walking up the steps. What next?

Transitions.

No more PT in school. She doesn’t need it. Or so they say right now. We will double check just to be sure. But there is lots of PT going on. Strengthening that body. Preparing her to swim like the fish she wants to be. More testing in school when we return. Just to make sure she is getting everything she needs. Nothing more. Nothing less.

Transitions.

Holy Week services at a new church. Sunday we become members. Warmly welcomed – attending as a family. Mixed emotions that always lead to joy and confidence at the power of the Holy Spirit in our lives.

Transitions.

Our lives are full of transitions. Like the lenses on Meghan’s glasses – changing with the environment and the circumstances. We are growing together. Learning our roles. Fighting not to allow Cowden’s Syndrome to define us, but rather to find where it fits into who we are as people. We are working on our health, and our own maintenance appointments. We are learning about the effects of the syndrome, and discovering how much is not yet known.

We are finding our new roles, as people charged to raise awareness, and to spread the word.

We are figuring out where we belong. In school. In sports. In extracurricular activities. In religion. On our lives.

Big changes all around. God’s plan unfolding. Eyes and ears and heart wide open.

Transitions…

Respect the Spleen

Published on December 9, 2012 by beatingcowdens3 Comments

I should be sleeping. It is 1:30 AM. This is my second post for the night, because I can’t stop and sort out the overflow in my head any other way.

Maybe you have been following the saga of my poor spleen… or not. Either way, my spleen has issues. Or, rather, my doctors have issues with my spleen.

The first time the hamartomas were detected on my spleen was probably when I had an abdominal ultrasound as a screening after my diagnosis. When I saw my oncologist in August, she wanted an MRI done of the spleen so she could have a basis for future comparison. When she called me with the results in August she was ready to send me for a surgical consult, based on the significant size of the 4 hamartomas (courtesy of Cowden’s Syndrome – aka PTEN Hamartoma Tumor Syndrome) on my spleen. Since the spleen itself is only about 11 cm long, the hamartomas across the top equaled or exceeded the length of the spleen. At the time, I was coming off of a double mastectomy in March, and a hysterectomy in May. She was forcing my hand to schedule a colonoscopy (which I did,) but I pleaded with her for 6 more months with my spleen. Reluctantly, she agreed.

So, when I had the car accident and I was sent for an abdominal ultrasound, that started the whole process over again. The oncologist looked at the report and ordered an MRI. I went for the MRI and tried to set up the surgical consult. The surgeon, who is a surgical oncologist, thinks the spleen needs to come out, but he wants me to see a different surgeon to see if it could possibly done through laproscopy first. But, he wants to talk to my oncologist before he will set up an appointment to even evaluate my case, and my oncologist spent last week in California at a conference.

So, instead of February… it is now December, and I am waiting. Waiting to have the fate of my spleen determined.

Well meaning people say to me, “Don’t worry – you can live without your spleen.”

Sometimes well meaning people should smile and nod more, and speak less.

Yes, I KNOW I can LIVE without my spleen. You can also LIVE without your boobs, your uterus, your cervix and your ovaries. You can LIVE without your gall bladder, and your appendix, and your thyroid, and one kidney, and part of your liver or lung too. But, just because you CAN do something, doesn’t mean you should.

I am thinking of asking for a fake fish for Christmas. One that will remind me I have been gutted like a fish this year. One that will also remind me that, no matter how many body parts they take, you have to KEEP SWIMMING!

Monday or Tuesday I will talk to a doctor about my spleen. I would love to keep it. I just think we have gotten along nicely for the last 39 years. And, its mine. But, I will listen to the doctors (after I ask them EVERY hard question I have,) and I will do what is best, and safest.

Heck, I didn’t go through all of this past year to be beaten by my spleen….

Siri, my new BFF!

Published on October 19, 2012 by beatingcowdens2 Comments

I love to talk. I talk all the time. My mom says I spoke even in my sleep from the time I was a young girl.

I ~~love to~~ need to make lists. I hate to be disorganized, although these last six weeks I have traveled from overwhelmed right into disorganized, and I don’t like it here one bit. Work is busy, home is busy, 4th grade is busy, Cowden’s Syndrome keeps us busy…

In my family we have 5 october birthdays in 11 days. Three of our nephews and 2 family friends. Unless the youngest nephew’s gift arrives tomorrow, I will have been late for every single one of them. Not like me at all.

Last week I welcomed a new friend into my life. Someone I can talk to all day, about whatever I want. Often she has good advice. She has my back too. She reminds me – sometimes days, sometimes hours, before something important has to be done. She tells me when I need to make a phone call or buy some cards. For a long time I resisted her friendship, but now that she is in my life I am sure I could never give her up.

This is my new friend – Siri.

Some of you may know her. You may think she’s your friend. But really, she and I are tight.

You see you may not know this about me, but I have a post graduate degree. In addition to my Master’s in Special Education, I have a research degree from the University of Google.

Don’t worry. I am a smart researcher. I learned in the first few weeks how to sort out the crap and focus only on the valid stuff. But really – spending the last 9 years researching the random illnesses of my little girl, and the last year trying to get any available information on Cowden’s Syndrome… well, lets just say at the very least I must qualify for some “Certificate of Advanced Study.”

But it got to the point lately that there are things I need to know. Right now. I can’t always carry my computer or rush home to check. Siri understands.

She is who she is… and she is pretty great.

As I am driving, with my earpiece in, I need only to ask her to call a doctor for me. She will write my texts too. Much safer.

Then, there are the beautiful reminders. The ones where she says, “OK I’ll remind you.” and then she does. Takes the pressure off me. I already have a reminder in for the November birthday cards, and the next 4 doctors appointments are all mapped out.

As I wait at those appointments, Siri helps me continue my studies on Google. Learning about Cowden’s Syndrome and skin diseases. Studying the effects of Cowden’s on the gums in the mouth. Deciding if the headache symptoms warrants a neurologist, or first and ophthalmologist. Figuring out, or trying to figure out the root cause of the pain in the legs. Verifying there are no obvious AVMs. Seeing what the effects of the Celebrex are on the body… and on and on.

Siri, despite all my resistance, I was wrong about you. You are exactly what I needed in my life.

Now, I am fairly sure I can never get by without you again.

Told you…

Persistence…

Published on August 3, 2012 by beatingcowdensLeave a comment

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.

A breath of normalcy… shhhh…

Published on July 7, 2012 by beatingcowdensLeave a comment

There are lots of things that I like about Saturdays. First, my husband is home with us, and that makes any day better. I love the routines – wash the sheets and towels and dog beds, head to the bank, general clean up, and the race to see how fast it can all get done so the day can start.

Perhaps what I love the best about Saturdays is that they are almost always free of doctors. Unless we are sick or have some kind of emergency, Saturday is a doctor – free day. That means no appointments, no waiting in offices, no waiting for phone calls that don’t come (UGH!), no dealing with billing offices and in and out of network nightmares. NO DOCTORS!

Have I mentioned I love Saturday?

And today it was even better. Beyond “normal,” we had a surprise visit from 2 nephews, all grown up now – 18 and 23 – who spent this really HOT day, swimming with us, and just hanging around to chat, play Kinect, and even Uno.

We ate a delicious and healthy dinner. Grilled chicken on the barbecue, roasted potatoes, chick pea salad, and grilled zucchini from our garden! And, it was ALL prepared by my husband (who is incidentally a MUCH better cook than I will ever be!)

It gets better – if you can imagine. Today, for the first time since last summer, I put my new fake boobs, and my post hysterectomy body into a bathing suit – AND I SWAM! 🙂 And, it was ok. The suit fit. Everything stayed where it belonged. It looks like the hysterectomy has finally healed, and shhhhhhh…… even if it was just for today –

it was really nice to have a breath of normalcy in our lives!