So... for the past 11 days, I've been processing. Processing what is happening. There was surgery, and I wasn't nervous about it in the least. It was just something that needed done, and I was finally getting around to doing it at a convenient time. No big deal. Rob and I drove to Ishpeming the day after Christmas, and it was going to be like a little romantic get away for us. That's how I envisioned it in my head at least - just some quiet, after-Christmas time, just he and me. Sure, there was a short hospital stay involved, but maybe we could hit some stores afterwards, or stop somewhere for dinner on the way home. And all would be no big deal, just one thyroid less, and then continue on with Christmas break.
When I woke up from surgery, I immediately knew something was wrong. I began choking, and not being able to breathe. Panic. Struggling for air. That was my first recollection upon waking up from anesthesia. "I can't breathe!" And a nurse helping me to sit up, leaning me forward, so that I could breathe. And I calmed. But my breathing still sounded odd. Wheezey. Is that normal? To sound like Darth Vader when you breathe?
Then I was in the hospital room, and I had no voice. Surely, this is just how it always is after such a surgery. I texted my dad, who had the same surgery, 7 years ago. "Dad, could you talk after surgery?" He thought his voice had been hoarse right afterwards. From the intubation and such. OK. Good. It's normal. I texted a friend of mine, who had also had her thyroid removed. "Tiff, could you talk after surgery?" It's all normal. That's normal not to have much a voice immediately afterwards. But when the nurse came in and I asked... "No. That's not typical at all," he said. REALLY? That's not typical? He was a night nurse, though. Never trust a night nurse. They only deal with sleeping people. What does he know?
They let me have mashed potatoes and gravy for dinner that night, and I choked with every bite. At one point, I coughed so hard that milk splattered all over the tray. In that wheezy, high-pitched cough that sounded horrible. Rob told me to slow down. It was better eating if I slowed down. And if I tucked my chin a little. That seemed to help. I texted my speech therapist friend. How do I keep things from going down the wrong tube? Chin tuck. Yes. I'll try that some more.
I slept upright that night. It was easier to breathe that way. The new night nurse was far more knowledgeable and responsive than the first. She didn't make a fuss about the way I sounded either, but I was still wondering if it was normal.
The next morning, the day time nurse came in. She said I could order anything off the menu I wanted. Seriously??? I was too scared. Still couldn't talk, wheezed when I breathed, choked when I ate. I chose mashed potatoes and gravy again. And with every single bite, I coughed. I choked. It went down the wrong tube. She heard me from the hallway.
"Is that you?" she asked. Yes. "Are you coughing while you eat?" Yes. "With every single bite?" Yes. Hmmmm. She left, only to come back a few minutes later.
"You're supposed to go home this morning," she told me. "But I think I'm going to leave your IV in, because you may not be going too far." What? What was that about?
The physician's assistant came in to discharge me, but as soon as he heard me, he paled. "We checked your nerves during surgery," he said. "We stimulated them, and they both worked. We need a scope to see what is going on."
I got dressed, and they brought a wheelchair to take me down to the office for a scope, but I refused. I could walk. It's not that far. Half way there, though, I had to stop. My breathing was too hard, I couldn't catch my breath. And the wheezing just would not let up. With every intake, I hummed. It was annoying.
The scope showed that both vocal cords were paralyzed, in the median position. In some ways, the place they froze was fortuitous - if they froze all the way open, my windpipe would have no protection at all, and I would aspirate everything I ate. All the way open would mean a feeding tube. If they froze all the way shut, my windpipe would be blocked. All the way shut would be a tracheotomy. Median... neither swallowing nor breathing was good, both were compromised. But not completely.
I could tell the PA was nervous. He kept repeating over and over again "We stimulated both nerves! They were working during surgery!" He reiterated that this had never happened in the doctor's 20 year history of doing this surgery. Sure - he had had a nerve not stimulate before - twice - and the respective people couldn't talk for four months. But not this. Never when the nerves were supposed to work. And never with both nerves, instead of just one. That had just never happened before. He had been doing 10 of these surgeries a week for the past 20 years. This just DID.NOT.HAPPEN.
"You're going to be out of commission for awhile" he told me. "It could take up to six months, just to warn you. And we need to decide soon if you need a feeding tube and a tracheotomy or not. You need to get in to speech therapy immediately."
We lived an hour and a half away, but speech therapy was something that I had the right connections for. I texted my work. Any openings with the speech therapist? In two hours? Who for? Me. Book it. We'll be there. The doctor was on the phone with the speech therapist as I was wheeled out to the truck. It was a snow storm out - it may be a little slow going, but Rob would get me there in time. It was in the truck that I noticed... they never had taken the IV out of my hand. The "just in case" IV was still there.
Apparently, it was the speech therapist's decision whether or not I'd need a feeding tube and tracheotomy. And she wasn't about to make that decision without a swallow study. So we met with the radiologist and the team, and I ate some food, and the machine recorded. Some flash aspiration of thin liquids, but with a chin tuck, able to tolerate purees. If I was good, ate only things the texture of pudding, and used the techniques she taught me - no feeding tube. Deal. I would get to go home.
Mom and Dad met me out on the porch as soon as we pulled up. Dad smiled and gave a hug. "This isn't exactly what you had planned, is it?" No. Not really.
I'd had a low-grade temp since surgery, and wasn't feeling so hot. I choked a lot with eating, and coughed the same cat-with-a-hairball wheezing cough. I slept upright in a recliner in front of the fire. When I tried to lie flat, I choked on my own saliva. My medicine I had to crush and eat with yogurt. No water at all - too thin. Couldn't control it. Even chewing gum make me choke, because it generated too much saliva. It was ridiculous.
On the third day after surgery, the stridor stopped. I was thrilled. I could breathe in silence again. But I was coughing a whole lot more - constant coughing. And I felt hot. Our thermometer didn't work, and I was getting panicky. What if I had aspirated? Pneumonia with paralyzed cords. That could be bad. That would mean tracheotomy for sure. I texted my speech therapist repeatedly. "I'm not aspirating right? Because I can't stop coughing and choking. But I'm okay right?" She told me to stop eating altogether, at least for the day. I did. Wasn't hungry anyway, and now eating was scary.
But the next day, I wasn't coughing quite so much. And swallowing seemed a little easier. By day 5, I felt brave enough to try scrambled eggs moistened with cottage cheese... and it went down just fine. Still no voice whatsoever - was talking via a text to speech app on my phone, but.... it might be a little better.
The stridor came back whenever I moved too much, but as long as I was fairly low key, I could breathe okay. By day 8, I could lay flat in bed without choking on my saliva. I could swallow a little better, as long as I took small bites and still did my chin tuck. The speech therapist advanced me to "soggy bread" consistency. Communication was still by text only. At one point, Reagan asked if I could read her a bed time story, and I broke into tears, because I couldn't. The thought that this was permanent scared me. What if I could never read my daughter a book again? What if I could never sing at church, or take communion again? What if I could never cheer my boys on at a soccer game? And when my parents go home? How would I talk to them on the phone? They were horrible about texting. But my mother, bless her, completely ignored my pity party. Which is exactly what she should have done. This was temporary. There are worse things than having to sit by a fire all day and be quiet. Get over it.
On day 9, the most glorious thing happened. The kids had gone back to school, my parents had left to go back home, and this was my third full day of not talking
at all. It was a big storm outside, and as I looked out the window, the song "Baby it's cold outside" ran through my head. Inadvertently, I began humming the song. HUMMING! There was actual sound with the humming!! Vibration!!! I called my husband up, and hummed into the phone.
"What the heck is THAT?" he asked. THAT is me. Humming!! Can you hear it? Can you hear it??? He could hear it. I was making sound!
So, every day I am getting a little better, feeling a little better, moving a little bit more. Swallowing is getting easier, and I've been able to eat a little more normally. Things are improving, and I have hope that I won't be out of commission for six months like the doctor thought I would be.
Yesterday, I went for my follow up appointment with the surgeon. He asked where my husband was, and I told him work. Odd that he would assume we would come as a team. "Does he need to be here?" I asked. Not necessarily, he assured me. Just assumed he would be. Then he proceeded to tell me that it was a good thing we did remove the thyroid, because it was cancerous. Not the big, huge, 5.2 cm nodule that we all were worried about. That one wasn't cancerous. But one of the smaller ones on the opposite side was. It had tripled in size over the past few months. He handed me a pathology report, and told me he would refer me to a local endocrinologist for follow up. "They may do radioiodine therapy, they may not. They'll have to do an ultrasound to see if lymph nodes are affected. And some blood work." I texted Rob to come to the hospital immediately, to hear from the doctor directly, and to answer any questions he might have. In the mean time, I had another scope, which showed that the vocal cords were starting to move a little. GOOD SIGN. The paralysis is improving. I could tell. The humming, the swallowing. Everything is getting better.
So, now I process. We told the boys, but not Reagan. No need at this point. And thyroid cancer has an excellent prognosis. My dad had it, my friend had it. I'm not afraid. I've done my research, and I know. It's a scary word, cancer, but I am not scared. I think maybe Rob is more afraid than I am of the dreaded word. But if you're going to get cancer, thyroid cancer is the type to get. It's slow growing, and it responds to treatment. And it's nearly always curable. So... it's a bump in the road but not a change in the life path.
Plus, as I think about it... right now I'm as cancer-free as I've been for at least the last two years. I DID have cancer, but they removed it when they took out the thyroid. I just didn't know I had it! And now, without that dang thyroid, there is less cancer in my body, and we just have to make sure we got every last little bit of it. So the diagnosis is really kind of retro-active, in any case.
Things are improving. I will be off work for awhile, and I'm learning the value of silence. The kids respond to me better with my quiet voice, which is interesting. When I whisper, Reagan whispers back. It's nice not having to yell. When I repeat myself now, I can just hit a button. I am losing weight (there's got to be a better way). And I am really at peace. I love the slower pace of this life. I am not productive, and when I try, I have difficulty breathing, but... that just reminds me. Slow down. Read a book. Listen more. Take breaks. I find I snuggle more with my kids, because I'm not always thinking about the next thing that has to be done. I sit and "talk" more with my husband. I'm spending way too much time thinking about myself and my own well-being at the moment, but that will fade as I get used to "the way things are". There are blessings with this way of life, temporary as it is. I am processing. I am learning.
