I was in the stairwell close to the 5th floor of the nursing home where my grandmother resides when the phone rang. I paused, startled by the ring, and trying to suppress my slightly out of shape panting before I … Continue reading
I had a list of things to accomplish while I recover from my vocal cord surgery on 3/3. I have been unable to work, preserving my voice for exercises given by my therapist, and brief conversation. But, aside from the inconvenience of not speaking, I have felt pretty well.
That left me with a little time to get a few things done.
I could not push it physically, but I sorted papers, shredded, sent Emails that were overdue, and generally handled things that had fallen by the wayside during the busy nature of life.
I discovered, much to my disappointment, that my attention span for reading has decreased exponentially since spending so much time at a computer screen these last few years. I vowed to get to work on that.
I also discovered that I have an account on the family’s “Netflix” and I learned how to sit still long enough to binge watch some “Law and Order.”
There was time over these three weeks for some honest self-reflection as well.
Sometimes it’s painful to put truth right in front of our own faces, but I had the time to do the work, so I went for it. I already wrote about isolation, and I had some time to think more deeply about what role my own actions play in that. I was able to reconcile that some of it is unavoidable, and some can be mended by me. Balance. I’m on it.
I also took a hard look at my own emotions and how they affect my house.
It is so easy to get “stuck” in the role of caregiver. It is so easy to live a task oriented existence, making sure things get done, and arranging the logistics of life. We may only have one child, but you add into the equation, two of us with a genetic disorder that involves countless appointments, surgeries, therapy and follow-ups things get dicey quickly. Add in that every appointment in NYC is a MINIMUM of 4 hours, and sometimes 6 or more, and the billing that comes with these appointments is at least a part-time job on its own, well, your head can spin. Then, you think about the issues that surround friends and family, illness, disease, financial hardship, emotional distress, and your heart can hurt. When you join that with “regular” stuff, like 2 working parents, a scholar, athlete, theater buff kid, food sensitivities, prescription medication, and anxiety all around – well, it can easily become all-consuming. And it did.
I sat in my office one day, looked around and realized I was unhappy. That was a tough realization.
I am not unhappy with my husband, or my daughter, or the countless blessings in our life. I just became so consumed with getting things done that I forgot myself. Literally.
Sometimes its good to reflect. It’s the only way to get things done.
Last week my sister sent me a box of essential oils. I was skeptical. I bought a diffuser. I feel like peppermint in the air while I work is good for my soul. So is trying something new.
Tuesday I went to Kohl’s. A quiet activity easily done alone. I felt the tension start to release. I picked up a few things for me and for the house. I went out because I WANTED to.
Something amazing happened Tuesday. My husband and my daughter both remarked that I looked happy. I had a story to relay at dinner that was about me. The mood in the house was lighter.
Wednesday I took a nap in the middle of the day. Because I could. Again, I found myself with a little less pressure in my shoulders.
That night I promised myself and my family, no matter how busy things got I would find a way to spend 15-30 minutes every day on SOMETHING I could say truly made ME happy.
I’m a work in progress.
I chose to do a deep cleanse on Thursday and Friday. I was working on my mind, but I had to bring my body along. It had been too long. I had gotten a little lazy in my habits and in my routines. I have this incredible nutritional system at my fingertips and in my home, and sometimes I forget to use it to its full potential.
I woke up this morning having released 5.1 pounds of junk. I started the day with a protein shake full of strawberries. I shopped with my girl this morning. Then, I got to listen to her singing lesson. Now, they watch a movie while I get to write. Then, my little family is off to dinner together.
This week the spring plants that sprouted on 3/3 started to really grow.
The caterpillars that came in on 3/2 have all become butterflies today.
Maybe we all used the same period to try to transform a little. Nothing like a few new butterflies to remind you about new beginnings.
I am focused on this journey now. I may falter along the way, but I will hold true. This feels right. This feels good. And when I feel right and good, it is much easier to remain
I have had a lot of time to think about a lot of things since my vocal cord surgery on March 3rd.
One of the things I’ve thought about is how I feel a little bad for kids/teens today. I know most are over-indulged, and don’t lack for things. But, these last 16 days, having to be very limited, and conscious of my voice use, I’ve texted- a lot. And, I find it completely unfulfilling.
Please don’t misunderstand, texting has its place. At full voice, I use it often. But, if there is a topic where voice inflection, emotion, or feeling matter, I can usually talk it out. I can’t help but think that MOST teens today have little idea how to hold an actual conversation, and that the digital media age is limiting, and severely dampening their interpersonal skills. The constant texting leads to misunderstandings, misinterpretations and a general feeling of loneliness that just doesn’t have to happen. I know – because right now I am living it.
I spend a good deal of time communicating online. I use Facebook, Instagram and Twitter. I blog as often as I can. I “meet” others around the world with Cowden’s Syndrome. And I am so grateful. Typically, the internet is a major source of secondary communication. Except right now – it’s a lot of all I’ve got.
I am still at a point of severely restricted speech. There were significant cuts made into both of my vocal cords. I need to practice the exercises given to me in vocal therapy. AND, I need to be quiet. Often.
I can speak a few minutes each hour, in a gentle voice. But, the rest of the time I carry my phone to text my family. Conversation is brief, and sometimes frustrating by no one’s fault. Tension can rise quickly. You find yourself on edge. It’s a wild form of isolation to be present, yet unable to communicate the way you want to.
I like a nice quiet day alone as much as the next person. The thrill of being on my own to watch a few shows on Netflix was not lost on me. I have appreciated the silence I so often wished for.
But, like everything, I’ve also learned too much of anything is not a good thing.
I retreat to avoid my natural posture, which is lips moving. I am ALWAYS talking. So even when my family is around, I’ve taken to “hiding.” It’s necessary for the healing. But, I’m over it.
There will be about 4 more weeks of gradual movement towards full speech, all building to a (hopefully final) post-op visit on April 13th.
In the mean time, I appreciate your texts. I appreciate your Emails. I appreciate your support. I am trying to store up these times of silence to see if they’ll help me through when life gets too noisy.
“You can have it all, just not all at the same time,” a wise friend once told me.
I look around at adversity, illness, tragedy, and loss. I am aware of my blessings. I am grateful.
I am also honest. I live my emotions so they don’t get the best of me. I laugh hard, and cry hard (although both are frowned upon as the voice recovers.) It’s all about balance.
So for now,
will have to be done quietly.
Irony is spending 20 years wondering why your students sometimes struggle to be quiet, and suddenly, in one week, realizing how insanely difficult it is to be silent, AND, that it’s likely your need to talk constantly is part of the reason WHY you went into teaching in the first place!
Last Friday, March 3rd, this ugly thing was taken off my vocal cords.
And they, like so many other parts of my body, now boast scars.
So, I set up for a few weeks out of work, and a week of required silence. I never actually thought I was ready, which is a good thing. Because I wasn’t.
I do poorly on twitter, Rarely could I get out what I need in 140 characters or less. Absolute silence involved my cell phone in hand at all times. A few times the thing almost learned to fly, as the fingers, and auto-correct could not keep up with my brain. But, life lesson number, oh, I don’t know, 4 or 5, teaches us that life goes on around us. Ready or not. Even when you have to watch and not participate.
There have been many times since March 3rd I’ve been grateful that thought bubbles do not appear above my head.
On the 9th I headed to the city for my follow-up. After learning the pathology was benign, and read only “polyp,” I was relieved. The doctor was pleased with the initial healing and told me I could begin to use my voice. Slowly. He said 5 minutes an hour. That sounded high, based on what the voice therapist had told me in the fall, but I was grateful. I used the first 5 minutes up asking him questions.
I wanted to know whether this was connected to Cowden’s Syndrome. I wanted to know if it was likely to recur, if I needed vocal therapy, and when my follow-up would be.
Apparently, kind as he is, he could communicate on Twitter much more efficiently than I.
Cowden’s Syndrome? I don’t know. There’s not a lot of literature. This type of polyp is usually a traumatic event, something you’d remember. But, you don’t. And it grew really fast. I’m not sure.
Recurrence? Maybe. Depends how it came to be. Be careful with your voice.
Vocal Therapy? Suggested. Start on the 13th. (Whew… THAT I now KNEW I needed.)
Follow up – April 13th, a few days before I am scheduled to teach my first class post-operatively.
He was an outstanding surgeon. Matter-of-fact. Thorough. Efficient. But, I’ve known enough surgeons now to know, they don’t play with why. They just fix it and move on. He will “doctor” me, to the point that he will follow-up, and hopefully watch NOTHING ever grow there again. But, in reality this is now just another vulnerable spot on this PTEN mutated body. Because, I would stake certainty that it’s connected. There just aren’t that many coincidences in life.
So I left Thursday feeling good. I got 5 minutes an hour! I tried out my voice in the car. I tried it out at home. And then, I picked up my daughter at school, and I was so excited to talk to her, I easily let the conversation surpass 15 minutes. oops.
Later when I spoke to my husband I was well past 10 before I stopped.
This 5 minutes and hour thing was not for the faint of heart!
Sometime Friday I decided that stopping at 5 minutes was, nearly impossible for me to regulate. It was quite possible I could lose my mind.
And then I texted the voice therapist to set up my appointments for this week. And I mentioned the 5 minutes. And that I randomly out of nowhere had vomited for 20 minutes that morning. And her words were crystal clear. “DO NOT SPEAK AGAIN UNTIL I SEE YOU”
I went from a poorly managed 5 minutes back to a feeble attempt at silence.
I spent 2 full days at a swim meet at with my girl. 7 hours each day away from home. I got to rest my voice, except when I felt compelled to tell her how proud I was. Or to wish her luck. Or to just chat… a little.
Some people really love chocolate. Me, I don’t mind chocolate, but I LOVE to talk.
We sat in therapy today and I got exercises for volume and pitch… all ironic because I struggle to tell the difference, but I’m an overachiever, so I try to do well. I sound like a complete loser, but I imagine it’s the same as me attempting something that requires coordination, like kick-boxing, or yoga. My poor vocal cords may not stand a chance.
6 exercises, 5 times each. Repeat 4x a day. And during those 4 hours DON’T SPEAK at all.
The revised schedule she gave me had 3 minutes an hour till Friday. Then, we’ll entertain 5 minutes again.
Tonight I pulled back into my office. To be silent I must be alone. I put some “breathe” into my diffuser, and tried to get my thoughts together.
Then I realized they ARE together. I just have no place to put them.
Tomorrow the house will be full for the snow day. Normally this would make me very happy. Tomorrow it is likely to make me a hermit.
Grateful the voice works. Grateful I tend to heal well…. But, some days
is a real trip!
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….
** 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!
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…
September is a marathon of sorts. Although all the training in the world can never quite prepare you for the twists and turns needed to navigate it through to completion.
September is establishing new routines, in my own classroom, and in our lives. September is learning new students, and new teachers.
Each year, it is about pushing our bodies farther than we have ever been able to. It is not just about surgical recoveries, or broken toes, it is about swim. So much swim. It’s about swim before sun-up, and afternoons too. It is about drama and singing and doctors in between. It’s about finding the inner strength to press on.
It’s about balancing it all. Work, school, after school, meetings, and the like. It’s about stopping to find the beauty, and the sunrise, and the simple pleasures along the way.
This life, this chronically ill life is lonely. I’m not going to lie, or even try to sugar coat it. It is lonely. But, we three in this house embrace and press on. Because, really, there is no alternative.
There is no fault, no anger, no resentment. Reality is that every moment is spent using all the “spoons” we have to get through. At this moment there are no extras. Family and friends who comprehend will still be there with open arms when there is a “spoon” or two to spare. The rest will have found their own way, and that is a loss we will have to take in stride.
Everyone has something. All lives are busy. All lives have joy, and angst. All we can do is take what is in front of us and do the best we can with what we have where we are.
The worry in my heart runs deep. There is reason for it, yet I battle it all the time. It can not, nor will it, define me, or our lives. Regardless, it lingers always, lurking in the shadows.
My girl continues to amaze and impress with wisdom beyond her years.
For her birthday Meghan had a very specific request this year. One of her gifts was, “The Unabridged Poetry of Robert Frost.” I was familiar only with one of his most famous poems. Meghan read this book fervently for most of August. I think I understand why now.
Lab work tomorrow to keep those thyroid hormones in check. We need our strength to remain
Calm down. Relax. It’ll get done. Take a breath. Why do you get so worked up?
These words could be spoken in several alternate languages for all the good they do for me. They make no sense. I mean, on a cognitive level I understand the words. And even the context. But, they hold little practical application for my life.
I am Type A. Yep. For it’s highs and lows, positives and negatives, I am a Type A personality. Although like everything in life, the transition between Type A and Type B is a spectrum, I’m still honest with myself.
Go with the flow.
I have a dear friend who has promised to make a t-shirt that says,”I am Flo,” to guide me. She has 4 boys. (She used to be full on Type A. Now she shoves that in a drawer for most of the year, but the chaos sometimes still makes her cringe.)
I am high-strung. I am focused. I am task oriented. I am all about getting it done and getting it done well. I get pissed when other people fall behind on their jobs. I want order, structure, and routine. I make lists on top of my lists, while putting alerts in my phone to avoid missing anything. I have a hard time forgiving myself when I do.
I am a work in progress.
But to some extent, regardless of your personality type, I guess that’s true of all of us.
September is chaos. True, unequivocable chaos. Here, in this house. Here, in my mind. September is the toughest month of the year.
And apparently I’m not alone, because this article really cracked me up. September Is The Worst
If I could jump from August to October, it would be smoother. And I’m not a big fan of wishing my life away. But, transitions are especially tough on the Type A among us.
And, when you’re a teacher – well. That’s just a whole other story. But, for the sake of brevity simply organizing class lists for 25 classes and 500+ students while they are going through new admits, discharges, and interclass transfers is a feat not to be taken lightly. With the knowledge that 9/11 took place just a few days into the school year, I am always filled with a super sense of urgency to try to know who I have, and what their needs are as quickly as I can. Figuring out who has allergies, and who has an IEP is another struggle. Establishing rituals and routines for the classroom of a Type A teacher in one period a week is a bit taxing. Not as tough for the bigger kids, but those tiny kindergarten faces are still in shock. There’s no way they even remember my name, let alone where they should sit in my room. Substitute plans must be prepared, because emergencies don’t have the courtesy of always waiting till October. Copies of the schedule, printed, Emailed, and hung everywhere. Supplies, traffic patterns, expectations, all need establishing and reminding. That’s after the room is set up, and the bulletin boards are complete, and evening back to school night is squeezed into the agenda.
The agenda that is busting at the seams. Because, I know all you moms of multiple children may laugh at me, and whisper about how easy I have it, but that’s ok. Setting up the school and after school schedule for the child(ren) is a full-time job on its own. August looks so nice. The calendar lulls you into a false sense of security, as one by one the activities start-up again. And then all of a sudden you are trying to figure out when you will shower, or fill up the car with gas, or eat, or grocery shop. Never mind hair cuts! There’s the one time deals, like back to school night, and “returning parents swim meeting,” Every minute of every day seems to hold something. I know I have only one kid, but that doesn’t mean she can take herself to swim practice. Or pick herself up. Or that most of the time I can even leave her there, as lingering fears about her health are always present. And on the days she stays late at school for Drama, that’s a little easier, except when it crashes into a meeting at school. And there’s morning study, set up for the intense schedule for the 8th graders, as well as Friday night Youth Group for stress release. I think there’s a few minutes on Wednesday between 3 and 4 for sunshine. Oh, wait… groceries…
And to the left of me sits the Open House Schedule for High School. Still shaking my head as to how THAT happened, I am trying to figure out their days of the week. Because, I think we can make the Staten Island Borough Fair AFTER the swim meet that morning in October. There is the TACHS test, and the Specialized High School Test. Although I’m not really sure when there would be time to prepare. Unless, maybe there’s and app for that?
I haven’t even mentioned our health. Isn’t that just funny? It hasn’t rested one bit. And the most ironic thing, is people don’t realize you shouldn’t mess with a chronically ill Type A. Chances are good they like to excel at EVERYTHING. And in my case, I am willing to throw it at them. Hard.
Some time towards the end of August I had surgery to replace my implants. Far earlier than the 10-15 year life expectancy they had been given, one had moved, and it was time. That night as I lay recovering I picked up an Email from Meghan’s endocrinologist that we should raise her thyroid meds. Her levels were off again. Now raising the meds in and of itself every once in a while is not a huge deal I guess, but Meghan struggles with synthetic ANYTHING, and the fact that we were now 2.5 years post op from her thyroidectomy and she has had more dose changes than I have had in over 20 years can be unsettling. More unsettling was when I read to the bottom of the letter that he would be on vacation for over 2 weeks. So, here I was left to make a dose adjustment without clearing my list of “Type A mother of a chronically ill kid” questions, which, in case you wondered, are far more intense than the typical questions I ask. I scraped together the new dose from the closet, because I think we have Synthroid in EVERY dose known to man, and started her on it the next morning. My local pharmacy informed me that the insurance wouldn’t cover the new script even though it was a dose adjustment and we would have to mail order it. But mail order takes 2 weeks. And there was no telling whether she’d be on the dose for more than 6 weeks. But, whatever. I set my sights on getting a copy of the lab report to learn the magic thyroid numbers.
And then the real battle ensued. I tried to get it from one doctor. They couldn’t release it because they weren’t the “ordering” doctor, even though she had added labs to the order. I called the office of the endocrinologist. Twice that Monday. And again on Tuesday. I got a call back late Tuesday while I was on the phone complaining that I couldn’t see her labs through the “MyChart” system set up at the facility. The ‘ office said they’d send them. The MyChart people said they’d look into it. I waited.
Exactly a week. There were no labs in my mailbox. I called the endocrinology office again. I got someone who promised to send them and did. I called the MyChart people again. No answers, except that some one told me it was hospital policy not to allow parents access to records of their children ages 12-17.
Listen, while I may not like it, or even agree with it, I can almost understand that there are SOME situations where teens have the right to keep their records. But, this, this is THYROID blood work. She doesn’t want it. TRUST ME. She just wants me to give her what she needs to feel well. That’s it.
I processed all I could about this at the same time that I got ANOTHER bill from this hospital. The date of service looked familiar. I keep copious records. (Type A… :-)) And I was able to see that a bill for the DOCTOR, the PHYSICIAN Group, and the HOSPITAL FACILITY all billed, and were ALL paid to the tune of over $1000 for a 15 minute visit. And NOW, they were asking me for 2 additional Co-Pays. Notwithstanding the fact that we have 2 insurances, so our secondary picks up the co-pay at many of our visits. I called the primary carrier. They reversed the charges, but told me the billing practice was not illegal. Ok, then its immoral. And it preys on people who are sick, or who have sick kids. The insurance company also told me it was ON ME to call them when this happens. ONLY when I call them will they reverse the charges because as per my plan I am to pay one co-pay per visit.
Good, cause I needed something else to do.
By the first Friday in September I had had it. I found the CEO and Head of Patient Relations. I fired off a 14 page Email, 7 page letter, and 7 attachments about everything wrong at their facility.
I have since received 4 copies of the blood work by mail, and 2 phone calls asking it I needed it. One mail even came second day express. Of course it was addressed to my minor child, whose signature means nothing, and who is not legal to vote, or to drive, but who apparently in some alternate universe should be making health care decisions.
I received a letter from Patient Relations that they were reviewing my concerns. I’m not holding my breath.
That same Friday I tripped and fell and did some number on the pinkie toe of my right foot. A clear fracture, although there is some debate as to whether it is displaced, and it will warrant another opinion. The 3 hours I spent visiting the last podiatrist was a waste of my time. So, I am in a post op shoe for some infinite amount of time going forward. Because there is little chance in heck the right foot is getting into a sneaker any time soon. Good thing it’s the perfect month to “take it easy on the foot.” (Insert sarcastic grin here.)
Last Saturday the vocal therapist told me that I have one irregular shaped nodule on my left vocal fold. It still gets to be called “benign appearing.” I was also told I have “significant vocal fold atrophy secondary to premature aging.” Well, that sucks. Because I thought atrophy took place when you didn’t use something. And oh, I use my voice. And the premature aging, well, that’s likely thanks to the 2012 hysterectomy that was a necessary preventative move. It all comes back to Cowden’s somehow.
Over the weekend I noticed that the knots from the implant exchange were getting irritated. This doctor like all the others had been warned, I don’t dissolve stitches. But, as wonderful as he was, he also needed to be shown. I clipped one of the knots myself and there was immediate relief. Then I second guessed myself. By Monday the site I hadn’t touched was red and warm, while the other was healed. I took a photo and sent it to the PA. Come in tomorrow she said. So Tuesday afternoon, my surgical shoe and I trekked into Manhattan. She pulled the stitches, read a low-grade fever, and marked the redness. She scripted me with 5 days of antibiotics but told me to wait 12 hours. Wednesday morning I sent her a photo. “Looks better, right?” I said. “Start the antibiotics,” was the reply. So, I did.
Friday, Meghan made it to morning swim practice. 5:15-6:30AM. I dropped her off, and headed home to shower. I met her with breakfast. We stopped off to drop her bag, and were at her school by 7:22. I picked her up at 2:20 and she made afternoon practice. I was tired. She made it to youth group too. I was in bed by 10.
Friday I spoke to the endocrinologist – finally. I really do like him, but I think we’ve established now that I can’t wait 4 weeks for communication. I don’t think it will happen again. We talked it through. Wednesday the 28th we’ll head to the hospital lab to repeat. We are going there because then there is no chance for anyone to blame a variation on a different lab. But, that’s ok cause there is that free hour on Wednesday… He will call me on the 30th with the results. I believe him.
I also believe that when I take his call on the 30th I will have a tall glass of wine celebrating the END of September.
This morning Meghan woke up with a sore throat. She had to skip practice. That’s always a tough call for her, but the right one. She’s beating Cowdens like a champ, but part of winning is knowing when to slow it down.
Slow it down.
I am so wrapped up in the have-tos, and the just getting by, that so much life is just on hold. We have to gather enough spoons to save for something fun. Anything. But there are no spares. Especially not in September. (If that last paragraph confuses you – you can Google The Spoon Theory)
Sometimes, when I have a minute, I think about calling some of the friends I miss a lot. But, I don’t. They have crazy wild lives of their own. My fears and anxieties and worries exist, and so do theirs. But for some reason right now, they largely exist separately. I miss them. And I am forever grateful for Social Media and the few minutes I can take, at swim practice or the doctor to catch up, at least on the surface.
I am super-blessed with a husband who not only tolerates my Type A, but works with me. He cleans, and cooks, and remembers to make me laugh. A lot. Often at myself.
I am three years deep into nutritional cleansing that I have no doubt is keeping me fueled for this crazy life. One day soon I intend to find a way to shout from the rooftops and share this secret arsenal of nutritious fuel with the world. Because without it, I’m not sure exactly where this Type A, broken toe, infected boob, woman, who needs a tour guide microphone to teach her classes would be hiding.
Instead of hiding, we remain,
Last Tuesday, on Meghan’s 13th birthday, we woke early and headed to the airport for what has become an annual family vacation. Disney World is a “happy place” for all of us. Despite crowds, and heat, we seem to be able to locate so much magic there. Plus, it’s not here.
I like it here. In my house, with my family. But being “here” in a broader sense means doctors and tests, and appointments and procedures. And traffic, and waiting. And bills, and phone calls, and all sorts of obligations that often keep me tied to my desk chair.
In Disney someone produces allergy safe meals for us. In Disney there is no driving. In Disney there are fireworks and parades and shows. While we are in Disney Mom watches the dogs and the house.
Those 8 days designed as a respite. A safety zone. A doctor free area. And we look forward to it every year.
This year was even more special because Meghan brought a friend. She got to bring a kind, compassionate, witty young lady who had been by her side through some ups and downs the past year. There is not a long list of people who Meghan trusts enough to take into confidence, and I can’t say that I blame her. But, this young lady has similar loyalty standards, and held her composure as Meghan threw some tough stuff at her. Meghan is forced to think about things and process things that are not even remotely acceptable to have to deal with at her age. Most peers are overwhelmed. Many shy away. This young lady did not NEED Meghan as a friend, they CHOSE to be friends. As different as they are, they compliment each other nicely. So we set off on our adventure this year as a party of 4. The Ortegas plus one!
Once we found our groove, (adding a wheelchair takes finding a balance) we were off and running. Great food, lots of laughs, and the highs and lows you’d expect from two spunky teenagers.
I was distracted Friday when my cell phone rang, while we were on the Safari at Animal Kingdom. I should have seen the NY number and known what was coming. But, I answered quickly.
It was my plastic surgeon’s office. The one who had told me they could fix my implant some time in the spring… well, they were offering me a spot on August 19th.
If you don’t have the back story on this I’ll give you the quick version. After a double mastectomy in March of 2012, I opted for immediate reconstruction. I was very pleased. Then in November of 2012 I was in quite a car accident. I took a good hit to my totaled Hyundai. The implants were intact, but likely never quite the same. By the summer of 2015 I had been experiencing some pain and discomfort on the right. I went back to my plastic surgeon in November of 2015. She told me the right implant had fallen a bit, and I should have (non-emergency) surgery to pull it back up. Except, she was no longer accepting my health insurance. The year that was had Meghan in the OR I believe 5 times. I struggled to get the courage to call the new plastic surgeon. I was annoyed to have to do all this again so soon. The initial estimate on the implants was 15 years. This was under 5. I finally got an appointment with the new plastic surgeon a full year later, in July of 2016. He concurred that a surgical procedure to “tighten things up” was a good idea, and that I could schedule at my convenience. So, I tried to get it scheduled for the summer. Then I tried for October when we have a few days off. Then I tried for December… and before I knew it I was looking at spring break, almost another year of what had transformed from pain, to just an odd sensation, all the time.
I listened as I was told I could have the date one week away. I looked around at the animals on the African Safari. I tried to keep my conversation low enough to make sure the girls, and no one else on the vehicle was following along. I promised to return the call in an hour.
I hung up and managed to share the story with my husband. Then I called my Mom. Then I called the plastic surgeon back. “Let’s do it.”
So the following Monday was spent ducking away to make phone calls to set up pre-operative appointments. Because the plane was due to land at midnight Tuesday. I needed blood drawn, and a physical Wednesday in order to hold the spot.
Tuesday we left Disney. The step count on my FitBit was over 142,000 I had covered over 62 foot miles. I was tired, but happy.
We did have a great week, and while I was bothered on some level that the surgical planning creeped in, I am skilled at managing many things from my cell phone. And, the thought of getting all that straightened out months ahead of schedule was exciting.
Tuesday it rained. In NY and in Florida. There was lightning. There were delays. Lots of them. Our plane landed well after 1 am. I hit my bed hard at 3 and was on the bus to NYC for the lab work by 9. After battling NYC traffic there and back, I went for the physical. Passed, and papers faxed to the plastic surgeon by 4:00. Success.
Life moves quickly. We have to keep up.
The call came Thursday to be at the hospital at 6 AM Friday. While I am not a morning person, only the surgically experienced would realize that is like hitting the jackpot. It means you’ve got first case. And that is a giant win.
There was little time to share the plan with anyone.
Yesterday morning I had bilateral implant repair between 7:30 and 10 AM. I slept till 1, had some ginger ale and crackers and was home by 2:45.
Last night I laid in my bed catching up on Email and I caught one from Meghan’s endocrinologist. The thyroid numbers have gone a bit off again. He wants to play around before repeating labs in 6 weeks.
Medication readjusted. Again. Illogical. Like so many other things.
Apparently #beatingcowdens involves scheduling surgery on an African Safari and readjusting medications hours post-operatively.
We’ve got this.
Thank goodness for our time in the “Happiest Place on Earth.”