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
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…
The first time I felt the pain it was last summer. It was under my right implant, and from my armpit a bit down my side. The pain lasted a few days and then eased itself into a chronic state of discomfort. I went from almost 4 years of barely noticing, and sometimes forgetting the silicone implants that had replaced the breasts in their earliest stages of cancer in March of 2012 to thinking about them all the time.
Now I knew the right one was there. And it was bothering me. For physical, and deeply psychological reasons. It was getting in my head. Messing with my focus.
I went to see my plastic surgeon in November of last year. I adored her. I wanted her to make it better. Her words were reassuring to a point. The implant was intact. There was some minor movement. I should get it taken care of but it wasn’t an emergency.
Then there was the bombshell. She was no longer accepting my health insurance. I definitely cried right there in the office. She cried too as she apologized, handed me the name of the doctor I needed to see and scurried out of the office. I still adore her. But, I’m sure I’ll never see her again.
So, faced with the reality that I needed to start over, on a journey I wanted to forget ever happened, I did the logical thing. Nothing.
I lived in a state of denial for months. And slowly I started to restrict the activities I would do with my right arm. Certain basic tasks would make it bothersome. Fitness-wise, push ups, planks, weight lifting, and even the elliptical were out. I no longer trusted my own body weight on that arm.
One day in December I mustered up the courage to call the office of the new doctor. It took a lot. I trembled. I had my calendar set up for January and February. I was ready to schedule that consult.
I heard nothing past that. After I was told the earliest appointment I could get for a consult was late March. I hung up the phone and did what I do when excessively frustrated. I cried.
When I saw my breast surgeon for our annual check up in February, she noticed the subtle problem. She asked who was looking at it. She also proclaimed it, ‘not urgent.’ I told her about my experience trying to get an appointment with apparently the only plastic surgeon that does breasts and takes my insurance left at this hospital. She vowed to have her scheduler help me get in.
I met with the scheduler.
I never heard from her again.
March came and went. Life was busy. Meghan was in and out of surgery, Pop had been so sick, Grandma was struggling, we had the fundraiser…I found a reason not to call every single day.
Then I really wanted to work out my arms again. Walking was getting boring. I mustered up the courage in April to call.
I had to take it. I cried again. I tend to cry most in my life when I am frustrated.
I brought Mom with me to this appointment. I never need another pair of ears. I did this day. I was a wreck.
The doctor was wonderful. Kind. Sensitive. Funny. Everything I feared he would not be. I exhaled. He said it was again, not an emergency. But, he saw my issue, understood my discomfort and agreed at my convenience he’d try to fix it. He ordered one test for a sensitive spot under my arm, and asked me to try some physical therapy when I could.
I talked it out with my mom. I talked it out with my husband. After waiting almost a year, I was ready to get it done and stop favoring my dominant arm.
I called to make the appointment for the test. Except it had to be done in the hospital. And it needed insurance pre-authorization. And I tried for one solid week to get in touch with this doctor’s office staff. Three Emails, 2 phone messages and several canceled appointments, I finally got a human.
I got them moving quickly, and they got the insurance authorization immediately. I scheduled the test, and it was fine.
Then I called to schedule the surgery. I was thinking I could still make August. I was wrong.
What about September?
I took out the calendar once again. We have 4 days off in October… No luck there. No, he doesn’t work December the week I’m off. And in February we have the fundraiser…
Looks like once I calm down I’ll schedule for Spring 2017.
When the time came to have the double mastectomy I opted for the quickest route. I was out of the hospital with reconstruction complete in 28 hours. I wanted this done. I was so incredibly fortunate not to need treatment. I was grateful. More energy to focus where it mattered.
Except once cancer has lived inside of you there is this uneasy feeling that can not be explained. There is this knowledge that somewhere in your body those cells did what they were not supposed to. There is this feeling that you were violated and betrayed by your own body, from the inside out. It damages trust deeply. It’s hard not to trust your body. It can really mess with your mind. So understandably, I was interested in functioning without that thought process. I had become adept at ignoring my scars and “nipple-free” implants.
Until I started to feel them. Every damn day.
This is minor. This can be fixed. And it will be. Just not in a time-table anywhere close to my liking.
I picked up the free weights again today. Really light. In my chair. What’s the worst that happens? Really? If it becomes an emergency they have to move faster.
Otherwise, I’ll balance that full-time job, that beautiful, active 8th grader, and a boatload of afterschool activities. I’ll try to get out of my own head.
But, no matter how vigilant, or how confident… thoughts of the potential renegade cell, lurking like a thief in the night never quite go away.
#beatingcowdens is a full-time job
“Count your many blessings, name them one by one…” Grandma used to sing years ago when we would complain about nonsense. She was a little tough sometimes my Grandma, and maybe that’s where I got it from. But, many times she was right, whether we listened or not. (Maybe that’s where I got that from too? ;-))
I like numbers. They are logical. They are what they are. In a world that often makes no sense at all, I find order in numbers.
Except sometimes I’m faced with the question of what to do when numbers become overwhelming in and of themselves.
This marks the 400th post on this blog. While it’s by no means a masterpiece, when I sometimes poke through old posts I remember so much of where we’ve been. It’s a definite roadmap of our journey, and Meghan and I take great pleasure when people from around the world reach out to us and cite the blog as a source of comfort and strength.
Cowden’s Syndrome is rare enough that it can be a lonely diagnosis. Being able to reach people the world over has been a victory for us, and them.
With over 170,000 hits on various posts I know we are getting the word out. Slowly.
I might have wanted to celebrate this post. I might have wanted to make it really special. But, I’m counting something else today.
Today was the 17th time I’ve gotten off the phone with the nurse, giving me pre-operative directions for my daughter. Today, I listened as I always do, reciting the directions in my mind before she spoke. Really my only interest was the time. The rest is routine. I want to stop counting. I want to just go with it. I can’t give you an exact count on mine anymore – because once you’re a mom, well, you just focus more on what’s important. And you become less important. And that is a gift, denied to many, cherished and appreciated.
Somehow though, if I stop counting for her, it makes her struggle feel less valid. The numbers give her strength. A badge of courage. Something concrete in this world of abstract.
My post last night was about “Patience”
And as I poked around the blog this morning I was taken back years, through so many similar posts.
Their similarities are uncanny. I guess the story doesn’t change much. Hurry up, wait, surgery, wait, recovery, wait, follow up, wait…
So I’ll leave this 400th post as unremarkable. Nothing has changed. Nothing will change. And that’s the precise reason we keep counting, and keep telling our story.
Tomorrow, surgery number 17. 9:15 arrival. As usual, prayers always appreciated.