Post surgery #2, Full-body scan results

This morning I went to find results of my full-body scan to see if I’m cancer-free. Long story short, I’m not cancer-free. Things continue to get more interesting.

Difficult case

For a long time, no one lead me to believe my case was unique, but slowly it has become clear that it is. I learned last week my first surgeon said my case was the most involved he has ever seen, and my new surgeon at University of Illinois at Chicago mentioned in passing a couple times that they have “round table discussions” about my case. Still, no one had verbally told me my case was abnormal until today.

The form of cancer I have is typically one of the most easily targeted in regards to treatment. Most people have surgery, maybe one round of radiation and they’re done. I’ve had two total thyroidectomy and neck-dissection surgeries and radiation in less than a year and there is still remaining tissue.

I went in today to learn if my full-body scan came back clean or if I need another round of radiation. While the full-body scan came back clear, my thyroglobulin level (which is considered a “tumor marker”) was high. Without getting too technical, the full-body scan uses a small dose of radiation (radioactive iodine) to see if anything is left in the body.

Since the scan came back clear, but my thyroglobulin level was high, this means whatever is left, is not responding to the radioactive iodine, and thus radiation will likely not work. Some doctors believe if you give a very high dosage of radiation, the cells might end up responding, but it’s a shoot in the dark.

What does this mean?

Next week I will have a PET CT scan, which uses glucose, instead of radioactive iodine, to identify abnormal cells. We are hoping to identify where the remaining cells are located. However, the catch with this scan is that it only works with decent-sized masses, and will not detect microscopic diseased cells.

So, right now radiation is off of the table (small victory) because it won’t likely work, and if the scan comes back clear, and my thyroglobulin levels continue to be high, I will just be waiting it out until the cells become large enough to be detected and most likely removed surgically again.

New Tattoo

This week I got a new tattoo, and it’s even more fitting now. The bike represents my ride last summer from Washington DC to Cincinnati, OH which lead me to diagnosis, as well as the biggest lesson I’ve learned–life is about the journey, not the destination; the date on the card in the spokes was my first surgery (8-31); and the colors are the thyroid cancer colors.

I’m continuing this journey and writing the best story I can with my life. I’m blessed to be loved so fiercely by so many of you all. Thank you for stepping along side me and remaining near in spirit.

Photo Jul 01, 2 23 33 PM

Surgery #2 and Recovery

As most of you know, I had my second surgery for thyroid cancer April 26, 2013–almost exactly 8 months after my first. I’m surprised I haven’t written until now, but recovery has been difficult and lengthier this time.

Surgery

I had my first surgery with a different surgeon at a different hospital, so I knew this experience would be different. However, I don’t think I was really anticipating just how much different it would be.

My parents flew in from California to be with me during the surgery and to help me afterward. I picked them up from the airport the afternoon before, and we made it to University of Illinois at Chicago (UIC) hospital for my surgery by 5:30 a.m. the next morning. My surgeon showed up a half hour late , so I didn’t get rolled back into the surgery room until after 8 a.m.

When I woke up from my first surgery, my surgeon was right there reassuring me, and it was a matter of minutes before I was in a private room and with my family. This time, I woke up and no one was around me. While the nurse visited occasionally over the next hour and a half, I felt very alone. To make matters worse, I had an allergic reaction to something they used in surgery, which created intense itching under my skin from my sternum to my chin. However, since the nurse wasn’t around very often, he didn’t take the time to listen to why I was crying heavily (I hate to admit this). Since my voice was weak and my throat was in pain, I couldn’t raise a voice to alert anyone’s attention. Instead, I sat weeping in my bed, wishing my family was there.

Eventually after what seemed like a lifetime, a room became available and I was wheeled to a room and able to see my family. The itching intensified over the next 6 hours, without any relief. Since my skin was so numb and I didn’t want to scratch close to my incision, I was rubbing my chin and neck for relief, but my hands felt like they were touching rubber because of the numbness. There was no relief. It felt as though thousands of ants were crawling under my skin and I couldn’t do anything about it. It was truly miserable.

I have very few allergies and interestingly, one of them is Benadryl cream. I have taken Benadryl successfully by pill before, but the nurses didn’t want to risk any further irritation, so they did very minimal dose through my IV and gave me morphine just to try and calm me down. It didn’t get better until my dad convinced them to finally wipe down the surgical prep area. I was only itching where they would have prepped me for surgery, so Dad and I thought my reaction might be from whatever sterilizing prep they used on my skin. Sure enough, after they did this, I felt exponentially better within 30 minutes. Dad said the next day, there was a clear red rash. It was such a rough way to start recovery, especially after being back in a room feeling uncared for and alone for what seemed like an eternity.

The room I was in was a double, which bothered me mostly because my family couldn’t stay as long as they could have if I was alone. For the majority of my stay, I had a very noisy roommate, which made it very difficult to sleep, and without anyone allowed in the room from 8 p.m.-11 a.m., it was rough. I was so thankful when they let me go home to recover.

36 stitches and a drain!

36 stitches and a drain!

Physical Healing

After my first surgery, they sent me home the second day with heavy bandaging on my neck and nothing else. This time, I went home after three days with no bandaging, and I had a drain in my neck for five days. While it was bizarre to have to drain a bottle of liquid from my neck several times a day, it is clear that my incision is healing much better and with a much slimmer line than last time. It was also much more comfortable not having thick bandaging to deal with.

Removing the enormous drain

Removing the enormous drain

The surgeon removed 47 lymph nodes from my neck. Raise your hand if you knew it was possible to have that many nodes in such a small area? I didn’t. This is after having several removed in my last surgery and he even left one chain of nodes on my left side and cleared everything else out.

Forty-seven. Wow.

The swelling on my neck and chin was much more apparent and lasted much longer this time (I’m still slightly swollen), though I’m not surprised. He said some of the cancerous nodes he removed were imbedded in muscle in the thyroid bed. and after reading the surgical report and seeing some of the major maneuvering they did in my neck, I’m surprised my swelling was equivalent to my overall body weight. For example:

“After rolling neck contents into the internal jugular vein, a combination of sharp dissection using a 15-blade scalpel, as well as blunt dissection with a tonsil clamp and division with Bovie electrocautery, was performed to released the neck contents off of the internal jugular vein.”

GROSS (and kind of awesome). The first time I read “rolling neck contents,” I gagged a little. hah

My chin practically disappeared for more than a week. It was a beautiful day when my dad looked at me and said, “Hey, I can see your chin!” 🙂

The first day I really noticed the swelling going down.

The first day I really noticed the swelling going down.

My pain level this time around is also substantially more, as well as the area left numb. Last time, I was numb under my chin and around my neck and never gained back feeling. This time, I’m numb from down on my right shoulder up to slightly above my chin and my right ear is completely numb (I’m seriously considering getting a new piercing, since I can’t feel it!). At the same time, these areas also have bizarre sensitivity, where clothing and touching certain areas feels like pins and needles. Wearing shirts with a normal crew-neck collar is completely out of the question right now, and extremely uncomfortable.

When I came home for recovery, my pain level was high, but no medication was helping. Until yesterday, there was a constant dull pain in my shoulder and sharp pains that changed day-to-day. The dull pain has lessened, but sharp pains remain, especially when I have to take a deep breath–a sharp pain in the back of my neck shoots down my spine. I’ve tried the narcotics they gave me, with no success, and every kind of anti-inflammatory, to see if it stemmed muscularly but who knows. I saw my surgeon this morning, and while he doesn’t know why I’m having the pain I’m having, he’s not concerned. I’ve given up on medication, so I’m just waiting it out.

The good news is, I’ve lost 5 pounds.

Emotional Healing

Healing emotionally has been a bigger challenge this time around. After last surgery, I returned to letters/packages/cards from my friends all over the country–I felt so loved. I definitely feel supported this time around as well, but there have been many dark days as well, and days where I feel isolated. I am thankful my parents were able to be here for my surgery and that my dad extended his stay for a week to help me heal. If they weren’t here, the dark days would have been unbearable.

One thing I’ve learned over the last 8 months is how much harder this journey is the longer you’re on the road. The longer you’re dealing with the same issues, the less people ask and the more isolated it becomes. I have started to think about all of the people in my life who have been on similar journeys, and I wonder how many of them felt truly uplifted lately. I encourage you to do the same. If you know someone in your life who has been struggling with any kind of issue for a long time, while it may be old news to most people, it’s something they are dealing with every moment of every day. Reach out–Give a hug, send a card, shoot a text, show support, let them know they’re on your mind. It can make all the difference.

Lately when I lay in bed at night, all I can think about is how much I can feel God’s presence. For some reason, late at night in the quiet of my room, I feel closest to him. He’s tangible–real. I feel as though the worries on my heart are already in dialogue with the One who loves me more than I could ever comprehend. I often get overwhelmed, sometimes to the point of tears, knowing that He wants to walk this with me. I remind myself Jesus is enough… I don’t need anything else. I’m not sure this has ever resonated so strongly.

Law School

I start school May 29. It’s been a long time coming, and now it’s approaching fast. I was also offered a scholarship for housing downtown for a year. I signed the lease yesterday. Below will be my view starting this August:

Photo May 05, 1 43 46 PM

Two Weeks Post-Surgery.

Tomorrow marks two weeks post-surgery. While the time has past relatively slowly, it is actually pretty hard to believe it’s already been two weeks. Each day there have been small victories in recovery. From removing the dressing, removing the stitches, removing to tape, to being able to lay on my back again, to sleeping in a bed, to being able to shower, to being able to run errands without wanting to fall asleep, to returning to teaching high school percussion.

I’ve been really trying to learn how to rest, which is something I’m not used to. I am so used to being borderline unhealthfully busy and now I am forced to take not just a breather…but to stop. I am also used to exercising daily. Yesterday I “ran” for the first time since surgery (12 days after surgery), and while I was only doing a light jog, my heart rate was between 170-180 bpm the whole time. When I finished, I realized just how much my body still needs to recoup. Don’t worry, I’m not going to try that again for a while…I realize now that there can be severe ramifications to that.

My heart rate is still very elevated from what it normally is. I’ve begun to wear my heart monitor when I’m sitting down, to get an idea of my resting pulse right now. I’m used to my resting pulse being around 60 bpm, because of how active I am. Now, it’s not uncommon for my resting pulse to be around 85 and as soon as I walk from one place to the next, it jumps up to 110-120 at least. I have really been trying to learn how to be physically still. It’s so hard. However, today my resting pulse has been in the upper 70’s, so hopefully in a couple days, I’ll feel safer about running or riding my bike!

This week I starting teaching high school percussion again and it was SO wonderful being back in that element. I truly hope I can inspire these kids and give back to them all that has been given to me over the years.

I meet with my ENT again next Friday for follow up and then meet with my endocrinologist the following Monday to talk about radiation treatment. I’ll be starting radiation in the next few weeks. I’m SO glad my favorite author, Donald Miller just released a new book, so I have good material for the days I’m quarantined for radiation :)!

Thank you ALL for your amazing encouragement and support! I am doing very well, and I am excited to see where this unexpected season of life takes me. I am comforted by Christ daily, and the changing seasons in Chicago–pumpkin spice and crisp air, can’t wait for the leaves to start changing!

Fact of the day: “Thyroid cancer will set a new record in 2012, with 56,460 people newly diagnosed in the United States and more than 200,000 worldwide. Unlike many cancers, thyroid cancer is increasing in incidence, and it’s the fastest increasing cancer in both men and women.” (article)

 

Photos from my recovery:

 

Day 4, second day out of the hospital

Day 4, First time going for a short walk in public. Threw on the scarf as to not scare children 😉

Day 5, Mom helping me wash my hair when I wasn’t allowed to get the incision wet.

Day 6, last day of stitches

Day 7, stitches out, tape on, waiting to get blood drawn to see where my calcium levels are.

Day 7, Came home to my apartment for a night and was overwhelmed by love of my roommate and packages in the mail. As a Colts fan, it was pretty bittersweet to receive a new Peyton jersey in orange 🙂

Day 8, driving for the first time since surgery. FIRST DAY that I did not feel nauseous since surgery!

Day 9, first time heading out to meet a friend to hang out–to watch kickoff Sunday football!!

Day 10, Stitches AND tape off. Complete healing commences. You can see fluid still sitting in the center where my thyroid used to be. Still waiting for that and the swelling to go down.

Day 10, I decided it was pretty cool that I now have two “smiles” 😉

Day 11, I can really see that this is healing beautifully now!

Day 12, Redness is really minimal now!

Day 13, It’s still healing very nicely, though I’m starting to get some serious stiffness in the back of my neck from the lack of use of the front muscles of my neck.