Speechless

Published on October 30, 2016 by beatingcowdens2 Comments

Resting your voice is not like resting your knee, or your shoulder. Resting your voice is more like resting your heart, or your lungs.

Something is kicking my butt. And I’m not sure what it is, but I am so not in the mood anymore.

This has been one chaotic stretch.

FInally recovered, mostly from my way too soon implant exchange in August, and my broken toe 2 weeks after, I am battling with trouble in a place I least expected to find it.

This summer I heard, “vocal cord nodules” for the first time, after feeling somewhat hoarse since April. I was quickly reassured by tons of people that these are “normal” and would resolve if I was careful. The doctor didn’t say too much, besides directing me to begin vocal therapy and return in three months.

I knew enough to listen when I was told to start therapy, and I did. Begrudgingly, and convinced it was bogus, I made my way to the recommended therapist. We got in a few visits before school, and then had to switch to weekly as my schedule just wouldn’t allow more.

For about four sessions I felt utterly ridiculous. Then I started to “get it.”

I struggled when I started work, and was told to purchase a “tour guide” microphone. I did, and the small 20 amp speaker with its wireless microphone have been an incredible help. Despite looking like a frustrated pop singer, I am able to talk longer, and with less strain. I am learning to speak differently, and in ways that are often unnatural to me, all with the desired end result being to reduce the stress, impact, and inflammation on my vocal cords.

I saw the doctor for a follow-up on October 11, and I got a very “Cowden’s-like” mixed report. I was told that the vocal therapy had decreased the inflammation. (YAY!) However, the reduction of inflammation makes me a better surgical candidate. (I had really hoped I could just make it go away.) AND, there was now a new, or newly visible “striking zone lesion” on the other side. Both of the lesions were not “typical,” and would not resolve alone. Both lesions appeared to have vascularity to them. And, the “striking zone lesion” was irregular in shape.

Despite his 99% comfort that the lesions were benign, I left with instructions to continue therapy, and to plan on having surgery close to the summer to remove the lesions. I was told for the first time ever, that I would need to practice COMPLETE VOCAL REST for 7 days post operatively, AND for the next 7 days, I would speak approximately 1 minute for every hour. The next several weeks would entail a slow progression back to my full voice use. The thought of it completely freaked me out.

At voice therapy, there were conversations about Cowden’s Syndrome, and our tendency towards over-scarring. The very real possibilities of what excessive scarring would do were discussed in a casual conversation. By this time I am comfortable, and confident in the therapist. She is smart, witty, and honest. She’s real without being painful. She also cares – about me, as a human, a teacher, a mom and a wife.

So, I had really hard conversations with my husband about the future, and I strengthened my resolve. I charged my microphone, and I found the voice that exists out of my throat. I have started to shorten my sentences. I’m learning.

About 3 weeks ago it started to get worse. Slowly and steadily worse. Every day I would do my exercises, and I just couldn’t get the sounds. My air was becoming a battle. The inhaler became a part of many days. I slept as much as I could. I stayed hydrated and took extra vitamin C. I ran no fever, but my chest felt full. My head was pounding.

I stopped using the phone for anything but texting. That was NOT the turn of events I needed, as I was struggling to keep up with people anyway.

Finally, I went to the urgi-center. I was told I had “a lot of fluid” in my head. I changed the allergy medicine. I took a nasal spray. I got a short course of antibiotics because it was lingering, even though I had no fever. I upped the saline, and the steam.

I barely, and I do mean barely, got through the day Friday.

Saturday I sat at therapy, so frustrated. She was so patient. So wonderful. She told me she had been researching Cowden’s Syndrome, and there wasn’t a lot out there on its connection to the vocal cords. We had kind of established that even if the Cowden’s didn’t cause the lesions, we still have to proceed knowing my body has Cowden’s and it affects everything. We can NOT scar the vocal cords.

She had looked at my exams from July and October. Side by side. Frame by frame. And very clearly stating, “I’m not a doctor, but…” I hung on every word. I processed them with respect. Some of our best help through the years has come with the premise of “I’m not a doctor, but…”

Vocal rest. That’s where we’re at right now. I am supposed to rest my voice when I am not teaching.

This is NOT an easy task. I’ve been at it for 4 hours now and I may lose my mind.

This is isolation at its worst.

The lesions won’t heal themselves. I can just get ready for when I need to heal. I can prepare for a lifetime of speaking in a way that babies my voice. I can practice being silent when it is so much the antithesis of my nature.

This time beating cowdens will require patience, strength of mind, and stamina.

It’s messing with me. But I’ve got this. I’ve got this.

If you don’t hear from me… try my email. Or texting. My typing skills will be improving greatly….

#beatingcowdens

The Fine Line…

Published on October 30, 2016October 30, 2016 by beatingcowdensLeave a comment

** Finding the balance has been a real struggle of late. This has been in my drafts for 10 days…**

I’m writing from the floor in the hallway of the college gym. Meghan’s swim team practices below. For hours. One day I will be able to drop her off and get a few things done. But, not yet. Not now.

I sit in the hall, out of view of my girl underneath. Out of view of her coaches who undoubtedly must think me paranoid. There isn’t another parent here. These are the big kids- 8th through 12th grade. And I’m not here because I don’t trust her. Quite the opposite. I sit here for the unpredictable. For the moments that take us from 0 to 180 in the blink of an eye. And even as I recognize that emergencies happen to anyone. At any time. I am here. Because history, track record, can not be erased or forgotten. I will pull away, slowly.

In the mean time I FINALLY got all my classes together, up and running, and pretty organized. Formative assessment is in place. Lessons are polished up, and I can take the 50 minutes each week that I see the 575 or so chilren as seriously as I like to.

Which is timely because it fell right into High School application season. Yes, season. 30 years ago this was not even a process. Now it’s an ordeal. These are tests to take for every type of school one is interested in. There are then scholarship tests to try to pay for the non- public ones. Open houses, “shadowing” appointments, where she goes to the school for the day to “see.”

This all seems to culminate by some time in December and then be followed by 2 months of waiting. It’s amazing how much “hurry up and wait” there really is.

And I am left to sit here. Quietly. I will her body to do as she wants. I that the right high school for her, is the one she attends. And, I watch as 8th grade starts to pass by.

Your experiences shape you. Your disease doesn’t define you. But, in our case it provides, stamina, endurance. tenacity, grit, and a tendency to want to over-achieve. Not a terrible list of negatives.

“Normal” is a relative term, constantly changing. When we are on the brink of better health, we sometimes find ourselves guilty of waiting for the other shoe to drop. We are often guarded and on the defensive. It’s hard not to be.

This past month a former student buried his mother and father 2 weeks apart. He is Meghan’s age, and while he had step-siblings, he was the only child of his parents. I haven’t had him out of my mind much.

These warnings, these screenings, these appointments, these surgeries, at times leave me down. But, not for long. We’ve been ordered to be vigilant.

There are no promises.

Today bleeds into tomorrow. September just about swallowed up October. And October seems hungry for November.

Stop. Or at least pause. Enjoy the process, no matter how tedious or taunting it may seem.

Hug your family. Call your friends. Even if it’s only for 5 minutes. Send a text. Stay in touch.

And I, I will be working on taking my own advice!

Overlap and Regrowth – Living with Cowden’s

Published on October 5, 2016 by beatingcowdens1 Comment

So, the night I was recovering from my breast surgery on August 19th, I haphazardly checked my Email.

There sat an Email from Meghan’s endocrinologist that shook me out of my anesthesia recovery pretty quickly. There is no time “in between” because there is usually SOMETHING going on. Overlap is a way of life.

Meghan had had lab work drawn the 3rd of August. Routine thyroid labs, and some tests from the gyn worked in. On the 18th the EMail from the gyn told me she was suspicious of a few lingering “issues” and we would address them at her late fall appointment.

The endocrinologist’s EMail said he was concerned about the resurgence of her “thyroglobulin” levels. He wanted to now treat her as a “high risk” thyroid cancer patient.

I almost dropped the phone, alone in my dark room. The last paragraph said he’d be on vacation for two weeks, and we could talk when he returned. I read. And I reread.

Decoding step by step – “thyroglobulin” is created solely by thyroid tissue. Someone with a complete thryoidectomy would have non-detectable levels about 3 or so months post operatively. Only thyroid tissue generates thyroglobulin. If some was left behind after her surgery a small number would have stabilized early. But for it to be gone, and then show up… This meant there had to be regrowth. And yes, it happens. Maybe to everyone, but definitely people with Cowden’s Syndrome. We regrow lymphoid tissue.

It’s a superpower of sorts. Except instead of being a really fun, save the world, or generate sunshine and happiness, superpower, it’s more of the – hey let’s add some more worry to your life superpower.

While the pathology on the thyroidectomy was totally benign, the mind can play lots of tricks. Lots of tricks.

I’m not slow. I am pretty well read. I’m equipped with the knowledge that having faith and worry are counterintuitive. Except I’m honest. And with matter of my girl, worry sometimes overwhelms. I never claimed to be perfect.

So I spent the last 6 or 7 weeks retreating. I barely spoke of this fear, this nagging thought that not only could the thyroid be growing again, but what if… what if all those precancerous things that we took out with it were somehow festering.

I made it my job to access the lab work. And it was a JOB. You would have thought what I was asking for just to see a list of messed up thyroid numbers. We live in a pretty crazy society. But, finally, after 2 weeks of labor, and getting increasingly vocal, I received 4 copies. All on different days. All from different people. But, I got to look at the numbers.

I am a numbers person, so I took some relief in the thyroglobulin being only 3. Undetectable was better, but 3 was on the better end of things. It was clearly well under that “10” I had found. So I took to waiting and ticking away the days until the next blood test. There was a thyroid dose change, and 6 weeks.

I broke my toe while recovering from the implant exchange, a few weeks after learning I was suffering not only from a single vocal cord lesion, but vocal atrophy secondary to premature aging, the latter which was likely due to the hysterectomy that became necessary after the breast cancer diagnosis in 2012.

And yes, I meant that to be a run-on.

It all kept me as occupied as I could while I hid in the start up chaos of September. I hate September. But, when you’re suffering personal angst and need cover under which to hide – it’s September for the win. I poured myself into setting up 25 classes, and over 550 students, logistically, and academically. It took some time.

And I kind of just ducked. Phone calls, texts… I played along.

“High Risk” thyroid cancer patient… like a recurring nightmare.

One of the reasons I was afraid to talk was the fear that someone would talk to be about thryoid cancer being the “best” cancer. Please, no one ever do that. When it comes to my child, a survival rate in the 90%s doesn’t soothe me. When it comes to my child, I, like every other parent want 100%. Nothing less.

I was scared.

We got the labs drawn at the hospital on Weds. the 28th.

On the 30th I was exploding. Every second seemed like an hour. Every scenario was playing through my head. So when I got the call that the test wouldn’t be ready till Monday I dissolved into a tiny puddle.

And then I did what every other mother does. I put on my big girl pants and got through the weekend.

Then Monday there was a brief phone call.

The thyroglobulin has returned to undetectable.

WHAT? How does that even happen? I sent out a million questions rapid fire. Most of them had no answer.

Crisis averted. Prayers answered.

I explained to Meghan why her Mom had been a bit extra on edge. She’s really growing up because she was grateful to have not traveled that mental journey with me, and appreciated me letting her in when it mattered.

Next blood test November 11. And we’re going with the theory that the thyroglobulin was a one time deal. An error. A miracle. Whatever. A win.

We’ve got 6 weeks. Some Mommy doctors. Some swim meets. 6 weeks. Sometimes that feels short. Right now it’s blissfully long.

On my knees in gratitude, we remain…