testing – beatingcowdens

“Thank you…” That’s how she led at 6:30 on a Saturday morning, when I picked her up 140 miles from home so she could squeeze in a uterine biopsy on the weekend, so as not to miss any class her first week of PA School.

“Thank you…” How many 21 year olds lead with that? Nothing to eat or drink. Half asleep. Headed to ANOTHER procedure which would require ANOTHER IV into a vein literally EXHAUSTED from overuse.

She spent a few minutes telling me about her Friday night out with her new classmates before falling asleep. “It doesn’t suck.” This was absolute music to my ears.

Anyone who doesn’t know Meghan, and hasn’t followed her story, and even some who think they know her, but haven’t really been paying attention, might think that describing her first week of classes as a graduate student by saying “It doesn’t suck,” is negative, pessimistic, or a bad attitude. But to me, who has been paying the closest attention, knowing the reality that virtually every school experience has “sucked,” this was music to my ears.

No point in going backwards to the countless times when she was belittled, ostracized, tormented, and tortured. She was never perfect, and she never claimed to be. But years of therapy have taught her not to shrink herself down to fit into anyone else’s box. I don’t know why many kids found her unlikeable. But she knew it. Always. And the ones who didn’t mind her were typically too afraid to speak up. “It doesn’t suck…” cautious optimism. I’ll take it!

I had 5 hours in the roundtrip between home and her school to reflect on this kid. And I have to tell you, I’m so proud of her sometimes I feel like I could burst.

Don’t get me wrong. The years of social isolation have been daunting and exhausting. But, they have given her wisdom and patience well beyond her years. She has gained confidence. She is insightful. She is capable of telling you her weaknesses right alongside her strengths. She is transparent, and straightforward. You never doubt where you stand. She is passionate, loyal and driven. She is resilient.

Writing has been hard for me these last few years. I feel like we mark time in between surgeries, rehab, appointments, tests, and more surgery. I have withdrawn from almost every relationship I have because most people seem exhausted by our chronic cycle and I have grown weary of apologizing for our reality.

Meghan’s tumor in her right thigh took up most of her high school and college years. ’19, ’22, ’23, and with the ultimate torture in the summer of ’24, she became a regular at PT during the years when kids her age were debating which party was better. A mere six months after the worst surgery by far, our New Year’s Eve was spent at NYU in recovery from her bilateral mastectomy. Which, in case you wanted a reference, she said was so much easier than the leg surgery. Well, pain wise anyway… but, I digress.

We are living inside of 2 PTEN mutated bodies with all the trials and tribulations that come with them. My own scans continue. Battles with insurance and radiology alike are the rule, not the exception. In the last 6 months two of our primary providers left their practices and the job of “training” a new doctor begins again.

Pride. Focus. Determination. Dedication.

Meghan and Ella graduated from Misericordia in May. Then, the difficult decision was made that retirement was in Ella’s best interest. Selflessly she put her best friend and closest companion ahead of herself. Again.

Ella is slowly transitioning to retired life with her “brothers.”

She left in early June, a year after that leg surgery that still has me traumatized. She walked away from me with her passport in hand, and traveled 2,500 miles to meet the one friend she will keep forever from her undergrad. They met in Vancouver and they had a 2 week adventure that included activities she had never even dreamed of being able to accomplish. She paid her own way with gifts carefully saved through her entire life. She is a traveler in her soul. This was the first of many journeys that passport will see.

We squeezed in a ton of appointments at the end of June, including beginning to “train” our new endocrinologist. One of the appointments was a pelvic ultrasound. She has had them frequently since her “endometrial hyperplasia” in 2015. And when the report popped into her chart that Friday afternoon – we knew it was going to need follow up.

Her gynecologist is just an utterly superb woman, who trusted me with her cell phone number at our first visit. I texted her and alerted her. She found the report, and we were scheduled to see her July 3rd. Classes started July 7th. Because.. why not?

Her biopsy was Saturday. I stayed with her until the IV was placed and we met up again in recovery. It is a dance so familiar to us that in and of itself it’s unsettling.

We don’t have results yet. But I am tired of waiting. I’m tired of waiting for the next thing to be finished before continuing our story.

This is an ongoing saga. PTEN mutations do not get “fixed.” We may find some lulls along the way, but waiting is so much a part of this life.

Meghan took this at a butterfly exhibit in NYC with her dad, on her grandfather’s camera. I thought the busted wing on this blue beauty was epic.

Meghan walked out of the procedure, stopped, looked me in the eye, and thanked me. Again. I told her to stop, and she said no. “I’m so happy I didn’t miss Friday night, because of that uncomfortable Saturday.”

Maybe that’s the lesson. Don’t miss Friday because Saturday holds a daunting reality.

Two 300 mile round trips in 18 hours. She didn’t skip a beat and was right on time for classes today where she belongs.

Here’s to hoping “It doesn’t suck” continues to transition…

#beatingcowdens

Meghan slept until 11:20 this morning. She woke only to the sound of the hammering as her father works to trim out the upstairs rooms – a project that had an intended completion date of about 2005, but hey, life gets in the way sometimes.

We had woken earlier, Felix and I – but not too much earlier. We had wanted to go to church this morning, but learned a long time ago NEVER to wake Meghan. She had gone to sleep at 8 PM last night, and if she was still sleeping soundly in her own bed at that hour – well her body was clearly telling us to back off. We have a lot of respect for her body. It gets VERY cranky if you don’t listen carefully.

My three girls... resting together. — My three girls… resting together.

But, by 11 – we had become so ingrained in what we were going to do, that it wasn’t too hard to forget that our 9 year old was still sound asleep under her covers.

When she came stumbling out of her room to the sound of the hammer she was dazed but smiling. After a good morning hug she asked what we had to do today. When I told her that we were going to stay home all day she leaped into my arms.

Can I read? Yes…of course.

Can I watch some TV? Sure.

Can I take my shower later, and stay in my PJs? Absolutely.

While part of me was tempted to lecture her about getting up and showered and dressed, I refrained. Just because I could never bring myself to spend the day in my PJs, doesn’t mean she can’t.

In so many ways Meghan and I are somewhat different, but also a good deal alike.

Our bodies eventually shut down if they are always on the go. We need our down time.

Growing up with a sister and a mother who could move like Energizer Bunnies, I always felt a bit odd that I couldn’t keep up. They still move like that. And I still need to stop sometimes.

Now, I have a mini -me. (And my sister has two! :-))

So when I looked at the April calendar earlier in the month I had had some serious reservations about whether we could pull it off. For most of the month we were on a 7 day schedule.

Meghan switched schools.

We had PT twice a week, dance class, music class, swim practice, swim meets, test prep, doctor’s appointments….

But, we did it. A small hiccup last week when she started with an ear infection, but a quick run to the pediatrician (after the orthodontist, and before it transformed into a full-blown feverish mess) and we got it under control.

State tests – 6 days of them in the last 2 weeks. Stress – all of them. But they are over too.

Yesterday I pulled out Meghan’s spring clothes. There wasn’t much we could use. The sandals from last year were a size 6. She is a 7.5. The same was true for the clothes. We put even less away for the fall. Nothing really. But we will cross that bridge then. Right now she is almost 5 feet tall and every inch of her beautiful inside and out.

No wonder she needs to rest sometimes. Her body is certainly hurrying its way through its growth.

I spent the entire day at my desk. I just finished about an hour ago when I began to write. There were bills to file, papers to sort, letters to write. There is a letter writing campaign I am working on for a stop sign by my school.

There were some Emails to answer about Isagenix – the nutritional system that is changing my husband’s life.

http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html (check that out here)

There were gifts to order, some lists to make, and I can now just about see the desk calendar, as it is ready to turn to May.

I probably should have gotten outside to enjoy the beautiful day too, but I guess this was my respite. I thrive on order and organization. I showered early – like I always do, but I relaxed by creating order.

You see Mom taught me a long time ago – that the more you look for order in life, the less you will find it. “You plan – God Laughs.” And I know she is right.

I really should listen to my Mom... — I really should listen to my Mom…

However, in this world where so many things are so far out of my control – I have a compulsion to control what I can. I can make sure the floor is clean, and the bills are paid, and the laundry is done. I can make sure there are always cupcakes for Meghan in the freezer in case there is a party. I can buy the cards, and order the gifts, and endeavor valiantly to balance my checkbook.

Crazy? Maybe. But I take satisfaction and solace in knowing that there are a few precious things left in my life I can control.

The last of a long series of lab tests ordered by my friend Dr. Elice was done Saturday morning. This is the week where I will find out what 37 vials of blood and 2 24 hour urine tests turned up. I will ask the 5,000 questions in my mind about endocrine function, and hormone levels, and ratios, and vitamin absorption. And, no matter how much I try to anticipate the answer, something will knock me flat on my ass.

That is how it goes. Cowden’s Syndrome keeps us hopping. And with Meghan there is an immune system deficiency, the chronic viral infections, and so many more things we are yet to figure out.

So – for tonight, the floor is clean, the list is made, the desk is organized. For tonight I can rest, and gear up for whatever this week has in store. And somehow, after dance class, and PT, and swim practice, and 2 meets… somehow it will all be OK.

I’m not in charge of this. It’s in the hands of a power far greater than any of us.