It has been a few days now since my surgery. It has been an interesting few days with a ups and downs. But let me tell you about the days leading up to last Monday, June 20 2016 – surgery date.
Leading up to surgery
I felt relatively calm throughout the whole week. I had the occasionally realization that I would be going for surgery soon and what that really meant. But I think I continued to be somewhat relaxed until Sunday night.
Jeff had helped one our neighbors out with something, so I had been alone for a little bit. When he came back inside, I was a bit of a mess. I just felt like crying. That is what I did, while Jeff held me. It didn’t take long but I calmed down pretty soon and everything was back to ‘normal’ again. Jeff and I spend the evening with some good food and a few of our TV shows that we wanted to catch up on before I went for surgery.
We did devotions, prayed together and just enjoyed each others company. Late that night we drove to my parents house for a while. My sister (Melissa) and her husband (Andrew) and my baby sister (Ines) were all there as well. We just sat around the table, played with the puppy my parents got not that long ago and just talked. We didn’t talk about my surgery but just family things. It was a kind of a normal evening, with the exception that in the morning a whole lot of things would change.
Before we all decided to leave, my Dad prayed with all of us and we headed back home. Everyone wanted to come along to the hospital in the morning to see me off to surgery.
Morning of the surgery
June 20, 2016. The day was finally here. I didn’t really sleep that night, maybe half an hour here or there. My alarm didn’t even have to go off at 430, I was already wide awake and got showered. I made sure my hospital bag was packed with all the things I thought I might need. My phone was charged but turned to complete silent so it wouldn’t drive Jeff crazy all day. Simply, just got ready.
I can honestly say I was calm even if I didn’t sleep. When I was close to being ready I woke up Jeff and he got ready as well. We were ready so fast. We were ready long before my parents even got to our house (they were driving everyone, so we only had to take one car). Before we left the house we prayed together again. My prayers for this whole day was not for myself. I knew there was literally an army of people praying for me and my surgeons. No, my main concern was for my family. For everyone that was going to be waiting to hear from me and see how surgery had gone.
Arriving at the hospital
When my parents showed up we shuffled into the car. When we got to the hospital we had to go through the Emergency Departments Admitting, since regular admitting was not open. Here we were, all 7 of us sitting in the Emergency room waiting for 545 to roll around so we could walk up to the surgical unit where I would be prepped for surgery.
When it finally was that time, we got to the unit they quickly told us, only one person could stay with me and the rest was ushered to a waiting room. Jeff stayed with me. I got dressed for surgery and sat in a chair waiting for the porter to come and bring me down to the operating room. Since it wasn’t even 7 yet (the earliest time they would come and get me), there was no point in me sitting in this room while my family was in the waiting room. Jeff and I walked down the hall to where they were, to say ‘goodbye’.
I did my round and my mom didn’t want to give me a hug at first. We stood together as a family again and Andrew prayed for us all. He prayed for me, the surgery, the doctors that would be operating on me, for them as a family who would have to wait all day to hear from me. I did my round again. My mom was crying and crying as I was hugging her. My throat tightened up and I had to swallow hard a couple of times, I didn’t want them all to see me cry. I wanted them to see me strong. In the end, I was going to come out of this just fine and there was no need for tears. God was in control.
Reality setting in
But oh boy, I wanted to cry. It definitely had started to set it. In about 8-10 hours I was going to wake up with parts of me gone. Who knew what the doctors would have to do, what they would find, how much they would have to cut out. Maybe no one would ever hear my voice again. A lot of thoughts that I desperately didn’t want to think about. After everyone got a hug, Jeff and I made our way back to the unit and sat a little longer.
When the porter came, she took 3 of us at the same time. Me and another lady walking and one on a stretcher. Jeff asked if he could come along until right before the OR doors but they wouldn’t allow it. At the elevators I had to say goodbye to him and keep walking alone.
It was the weirdest feeling walking away and having the elevator doors close him from my view. As we walked into the OR, I was put on a stretcher and waited longer. I was told Dr. S. and my anesthesiologist would come and talk to me. I don’t know how long I waited. I was one of the first people in this pre-op area and the last one to leave it.
Everyone else around me had all kinds of doctors come and talk to them and I was just waiting. I was getting so nervous, I was starting to sweat. I started to pray and recite scripture in my head. The “Lord’s Prayer” came to mind and I don’t even know why. I recited it over and over in my head in the form of a German children song.
(I’ve attached it, if anyone wants to listen to it)
Surgery Time
It was so calming to sing this song I grew up with. I think I actually fell asleep at some point. That is how calm I was again. I just had this assurance that God had this. God was going to be there with me in the Operating Room and he knew what was going to happen. So why should I worry about it?
After a while Dr. S. came to my stretcher to make sure I had no more questions before the surgery started. He also informed me that my kidney test, which we were waiting on had been negative. y calcitonin level, however, was very high, as expected. I was so relieved when he told me about the kidney that nothing else really mattered anymore.
When my anesthesiologist came by she also went through a whole bunch of questions with me and then it was time to be wheeled into the operating room. I knew it was cooler in there but man… its freezing. By the time I got onto the table I was shivering. Dr. S. made all the introductions to all the other people in the room. He mentioned that I was from PICU when my anesthesiologist was like: “Oh, maybe that’s why you look so familiar. I just did a rotation there and you had that one girl that was walking around with heating pads and was showing them to people”.
I couldn’t believe what I was hearing. All I could say was “That was me.” We all had a good laugh about it. Such a small world. Honestly there wasn’t a moment while I was awake lying on the operating table that I was afraid. My IV was started and off to la la land I went and surgery got started.
Post OP Recovery
When I first woke up from surgery all I wanted to do was move. My back hurt so much, I think I might have even told off one of the nurses to stop and listen to me until they got me more comfortable. I have to say this hospitals recovery room was placed very beautifully; that is if you can enjoy it. When you wake up, all you see is the outside. It was a gorgeous day outside.
I wish I could have enjoyed that a little, but every time I would open my eyes, a huge wave of nausea would hit me, to the point I had to throw up. While in recovery, I think I lost count of how many times I threw up. I just felt so unbelievably nauseated. Never had I ever felt like that, and non of the medications they were pumping into me were helping even a little bit.
At some point they started wheeling me out of the room. I don’t remember anything of my trip up, until I got to my floor. As they wheeled me out of the elevator, I saw my dad walk right in front of me. When he turned around and I tried to wave at him. Apparently the first thing I said to him was: “I can talk”.
The First few hours
I remember trying to tell my parents to let Jeff know that I was out, since I wasn’t sure he would know yet or if he was in the hospital. Even though my surgery (or at least recovery time) hadn’t taken as long as they anticipated. Once I was settled in my room I had my mom and dad at my bedside holding my hands.
I had my eyes closed for most of that day. Every time I would open them, another wave of nausea hit. When Jeff got to my bedside he told me so many times that he loved me and I could barely tell him how much I love him. The first few hours I don’t member much of what happened. I just know that when I wasn’t throwing up, my eyes were closed and occasionally I tried to talk to the people around me. Honestly I had almost no pain, the only thing I was really struggling with was the nausea.
Sometime in the first hours Dr. S. came to my bedside and gave me a quick run down of how surgery went and how much they ended up having to do. He explained to me, my thyroid was not as affected as they had thought it was going to be. However, my lymph node involvement was more extensive and it had taken quite a while to remove most of those. Most of the news was very good, but a little bit of bad news had to be there.
Some things to consider
He told me that 2 of the tumors were growing on the nerves that control my vocal cords, one on each side. He also explained that he wasn’t able to remove those completely without having to take out both nerves. If he had done so, it would have left me with a tracheostomy and the inability to ever speak again. They made the decision to scrap off as much as they could and have the rest be taken care of by chemotherapy.
Dr. M., the other surgeon in the surgery with me, has been very active in getting this certain kind of chemo approved in Canada and would refer me to this program once I had been in Dr. S.’s office for my follow up. This type of chemo is not the typical type you might see on TV, its a pill that can be taken at home over a period of time and is less toxic. Although that wasn’t really the news I wanted to hear, I had to say I was so unbelievably grateful to the doctors and to God for having made the decision to leave both nerves intact.
Surrounded by Love
I had many lovely faces surround me, Jeff and my parents were never far. I had family from my side and Jeff side come to visit me, as well as some friends. The plan for the night was for Jeff to stay with me and make sure I had everything I needed. Around 1030 he started getting ready to go to sleep. When he got back to the room he told me, the nurses informed him he couldn’t stay in the room. He had to either leave, or sleep in the waiting room. I told him to just go home.
I wasn’t doing much anyway and mostly sleeping, so I told him to go and get a good nights sleep and then come back in the morning. So, he left and the rest of the night was spend by getting pain meds, antiemetics, lots of sleep and lots of nausea. At one point my fingers and feet, as well as my lips, started to get numb and tingly. It turned out, my calcium plummeted so low that it needed to be treated. A few doses of that and everything was good again.
In the morning my mom came early, before 7 even. She helped me get out of bed for the very first time. When I saw myself in the mirror for the first time, I was a little shocked. There was this massive scar going from one ear to the other, much larger than I myself had anticipated. A drain was coming out of either side of my neck. Everything was spinning just a bit, but at least the nausea was gone. My room mate had been very loud throughout the night so the first few hours of the day, I just slept a bit more.
Hospital Recovery as best as possible
Dr. S. came into my room around 7 to check in. He agreed, I should probably stay another night since I had such of a rough time waking up from anesthesia. Plus, one of my drains was still putting out quite a bit of fluid so he wanted to see that slow down as well. He honestly has one of the best bed side manners I have seen ever and that is saying something working in health care. (No offence to any of the lovely docs I work with every day).
Being that I was born and raised in Germany, watching Germany play soccer is almost an obligation. So when my mom came into my room around lunch time, saying she was just watching soccer in the waiting room, I was up in a matter of minutes. Then deposited myself in a chair just in front of the TV, watching the game. Jeff brought up some food and my appetite definitely has improved since the surgery. I finished almost an entire large bowl of soup.
One thing I struggle with though, is the way people look at my scar. I know eventually it will fade away a little, but I am still self – conscious about it. Its big, its red and its right on my neck, not a place that is easily hidden. That is something I think that I will have to come to grips with over the next few months. Many who came to see me, have said the scar looks great and looks better than anyone had thought. I guess that is true but its still very obvious. Sometimes I think about what people might think if they don’t know what my scar is from, how they might think I got it.
More Love
The rest of the day I had some visitors including Jeff’s mom and grandma, as well as my immediate family. Morphine was a good friend of mine every 4 hours and it worked like a charm. Although by the end of my hospital stay I definitely felt like a pin cushion. I had bruises from from a failed art line, from the art line removal, from various blood draws and then the subcutaneous morphine injections.
I have to say, this whole experience has definitely made me appreciate what my own patients go through, so much more. That second day in the hospital, I made another experience I never thought I would have. My baby sister had to help me with a shower, or better say she showered me, since there wasn’t much I could do for myself.
It was nice to get my hair washed but I never thought that Ines would ever have to do that for me. My whole family has just been amazing with helping me out. From holding on to me when I’m walking, to getting me into the bathroom, to showering me. All the way to helping me dress and at the beginning having to do absolutely everything for me, because I couldn’t do anything myself.
Discharge
In the morning Dr. S. came by to check on me. This time we agreed it was time to sent me home. He asked me if I wanted to see a picture he had taken in the OR after they were done cleaning everything out. Of course I wanted to see that. He showed it to me and explained a few things that he had. It was a really cool thing to see. Before he left he made sure one more time that I felt ready to go home. That meant today was discharge day.
Meaning the drains also had to come out. When the nurse (who was someone I went to nursing school with) came in to take them out, the first thing I did was to ask for pain medication before she started. I got another shot and while we waited for that to kick in, she took out my IV and did all the discharge teaching. Then it was time to pull them. I was quite nervous for this.
I had talked to a friend who had thyroid cancer. His experience taking the drains out was very, very unpleasant. So, I was afraid. First she cut the sutures and it turns out that someone new had done them and had tied them very tight. So tight in fact, she couldn’t cut them properly without removing the drain first. After the drain was freed and pulled she worked on that stitch for a little while longer. The drain coming out wasn’t even close to what I had imagined. It was a very weird feeling but it didn’t really hurt that much. It was just very interesting feeling that I can’t even describe. Once they were out and I was dressed I was free to leave.
Free at last
I felt great. I told my mom and Jeff, who were picking me up, we could go to the pharmacy first and pick everything up before going home. Oh, but only a few minutes into the trip I definitely changed my mind. I was so uncomfortable sitting in the car. Every little bump, every tap on the breaks, I could feel it in my whole body. When my mom asked me if I was sure I didn’t wanna go home, I quickly redirected her to take me home first. Once there I was nestled onto the couch, where I am writing this from.
I have spent a lot of my time in the same position. Two large pillows around me with blankets close by and a tray right next to me with all my medications, my drinks and the remote on it. I spend much of the first day at home watching TV or sleeping. Sleeping probably more than anything else. I think on my second day at home I just needed to get out, so Jeff took me on a very small walk just outside our house. It was so nice to get some fresh air and have a change of scenery.
Help at home and first complications
On Friday, so post op day 5, my best friend (Annika) came from Ontario to spend about a week with us and help out with taking care of me and things. Washing my hair and then having to dry and style it is still a little difficult for me, so having another girl in the house is very, very helpful. That night Annika and I decided to take a walk around the block.
I felt good getting up and walking, so with a scarf around my scar we set out for our walk. We had walked half way around the block when I started feeling a pressure on the left side of my neck. I stopped a couple times and swallowed hard, but didn’t really say anything. I didn’t want to freak Annika out and at this point I wasn’t really worried myself.
While I had been in the hospital, I had mentioned to the doctors and nurses that it feels like a pill was stuck in my throat. Everyone just seemed to think that was very normal and it wasn’t anything to worry about. That same kind of feeling was starting again. When we got back home, we watched a little more TV and then went to bed. By this point the pressure in my neck had turned into a feeling as if someone was gripping my throat and squeezing. Jeff had gone to bed a little before us, when I crawled in, I woke him up and told him that if I should wake him in the middle of the night he was going to have to take me to hospital. I explained to him how I was feeling, but reassured him that it was still ok.
More Complications
When I woke up, I could still feel it but hoped it was going to fix itself. I showered and washed my hair. By the time I got to my usual spot on the couch I was completely drained. Plus, the pressure was still there. I had breakfast which must have pushed me over the edge.
Within 30 minutes I was feeling awful, the pressure was more intense and had to take extra deep breaths, because I felt air hungry. I couldn’t get comfortable. On the right of my back was a new area of immense pain. Annika was trying to help me by rubbing my back and hot packs.
I was laying partially on my side started getting a nosebleed. Growing up, I often had nosebleeds which had to be cauterized multiple times. Over the last few months I was having mini nosebleeds again. This one quickly turned into a very bad one. At one point my head was over a bucket with me holding pressure and the blood dripping into the bucket anyways.
I asked Jeff to call Health Link. Once we were on the phone with her, she told us we should go back to the hospital and if I should have more trouble breathing we should call an ambulance to meet us. We hung up and Jeff called my mom who was going to drive us. I was dressed to stay at home, so I needed to get dressed. At this point the nose bleed had finally stopped after about 15 minutes. I was in so much pain I was in tears. Crying definitely didn’t help with the pressure in my neck. I think I was on my way to a full blown panic attack. I was forcing myself to take some deep breaths.
Back to the Hospital we go
When my mom got to to our house and we got into the car I was calm enough that I wasn’t feeling as short of breath. The pressure, however, was still getting worse. At some point during the drive I told my mom she needed to speed up. She was trying to go slower to not hurt me. All I could say was: “Mom you need to drive faster, I’m gonna stop breathing.”
I prayed so much on that drive, for God to keep me calm and let me get to the hospital so we could figure out what was going on. When we got out of the car, I was so dizzy. I needed both Jeff and Annika to guide me inside to the triage desk. Again, I was crying and breathing was getting more difficult. The nurse at the desk told me: “You need to calm down, you are in a level 1 trauma center. We can have a whole in your neck in 2 minutes flat.”
I mean he meant well, but if you are trying to calm someone down, that might not be the best approach. Anyways, after he took my vitals signs (Which were completely out of whack with a blood pressure in the 150s) he told me to go sit in the waiting room; and so the waiting began.
Eight hours, 3 attempts for blood work, 1 x-ray and 1 ultrasound later I was sent home again. It turns out I have a fluid collection on the left side of my neck that is about 2×2 cm and very unfortunately placed close to my trachea and esophagus. Nothing needs to be done at this point. We just need to keep an eye on the situation.
Three steps back
The next morning I was definitely feeling the toll the ER visit had taken on my body. I was so sore. All of my muscles were in complete spasm and stiff. I felt like all the progress I had made in the last few days with my range of motion was null and void. Since it was a Sunday, we went to my parents house for lunch. My mom did some light massaging and trigger points. She also helped me stretch out a bit more and I felt a little better afterwards.
That brings me to this morning. I woke up feeling the best I have since surgery. Yes I am still in pain every once in a while. I am still stiff but its definitely getting better. However, I am so thankful to god, I hardly needed any pain killers today and my head is completely clear and not foggy from any of the medications. There are issues and I can’t really lift my arms completely, especially my right arm. I also still have a lot of numbness and things like that in my neck and up at the back of my head, but I am doing better every day. Praise the Lord.
Thank you every one for all of the prayers during the surgery and all the amazing support you have shown us in these last few weeks. We couldn’t have gone through this time without all of the prayers and encouragements.
