Post surgery #2, Full-body scan results

July 3, 20135 Comments

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.

Life is beautiful when you allow people to journey with you

June 29, 20131 Comment

So much has happened and changed since my last post, and I am wondering if I can even put it into words. It has been one of the most memorable months of my life. I’ve challenged myself intellectually, made new friends, hit some of the highest and lowest points in health and relationships, and continue to try and heal from a deeply hurting heart. In everything, I see how beautiful life is when you allow people to journey with you, near and afar.

Deanna, Katie and I at the beach.

Criminal Law

I’m about half way done with Criminal Law, and it has been quite an adjustment. I remember when I was studying for the LSAT, there was a distinct week when I finally noticed a shift in thinking and a new level of understanding of the material. It was so different from my studies in journalism/music/biblical studies. Because I was supposed to start school a year a go, it has now been over 2.5 years since I took the LSAT, and if there are any applicable skills to carry over to law school, they have been lost the hiatus.

It’s been humbling to be around such brilliant people and learning from a great professor. While this type of study does not come naturally to me, I do have the confidence that I will fight through and come out on the other side. This last week I feel like I finally started to see a similar shift in thinking, particularly in the way I read news and think about issues. It’s fascinating.

I have spent an exuberant amount of time with people in my class, and spent many late nights out on the town and days studying, spending time at the beach, etc. I cannot begin to articulate how much your support has meant to me. Each of you mean the world to me, in very genuine ways.

Night at the Navy Pier listening to a live cover band and watching fireworks.

Physical Therapy

I started physical therapy a few weeks a go. Before they can work on my post-op muscular and nerve pain, they have to correct my spine, which apparently is fusing itself together in my neck. This problem has absolutely nothing to do with cancer/surgeries, he said it actually looks like I was hit in the back of the head with a blunt object about 5-6 years a go–Bizarre. In any event, I have at least three months of PT 3x a week to correct this problem. Half way through they will reevaluate and decide if they can add a fourth day in to work on the muscular, nerve pain.

The black line is a normal spinal curve, the red line is mine. Two of the vertebra are already fused in the back.

Physical therapy has been excruciating, but I don’t know if it’s in a good way yet. Because he’s been focusing on correcting my spine, and not giving attention to my post-op pain, I sometimes feel like some of the exercises I do may be improving my spine, but worsening the post-op healing. I’m in more daily pain now than I have been any other time this year. I’m praying this is just because it must get worse before it gets better, we’ll see.

Cancer-free?

After injections and radiation from last week, I will find out this Wednesday if I am cancer-free or if I need another round of radiation. I really don’t know what to anticipate heading into this appointment. I get nauseous thinking about it.

I’m praying it’s clear, largely because I want to focus on becoming well again. This whole process has been a bit frustrating because right when I feel like I’m turning a corner toward good health, I’ve had another surgery/treatment/adjustment to bring it even lower and start the building process over. When I finally felt recovered from the first surgery, it was time for radiation. When I felt as though I was finally getting energy back after radiation, it was time for my second surgery, etc.

I’m praying this Wednesday I get the all-clear signal so I can focus on physical therapy and working towards a level of health I once had. In any event, it’s a big week, and I kindly ask for your prayer for strength physically and emotionally.

Thyrogen injections before radioactive iodine and full-body scan.

Surgery #2 and Recovery

May 9, 2013May 10, 20132 Comments

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!

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

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.

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:

Redemption to my story

April 10, 2013May 10, 20134 Comments

Since my trip to Italy, life just continues to look up.

The new job is great. I feel valued and challenged at the same time–which is the perfect balance. I have been getting up around 5 a.m. most mornings to get my runs in for the 1000 mile challenge and packing a healthy lunch and working vigorously from 8-5 p.m. I love feeling productive again.

Law school

The most exciting news since my last post is that I have registered to start law school this summer! Instead of waiting until the fall, I have registered to take Criminal Law this summer. I could not be more excited. We had an admitted students weekend last week, and I met some awesome ladies from my entering class, as well as a few people who would’ve been my classmates this year, who I have been connected with via Facebook. It was so encouraging to meet them in person and to feel so welcomed and supported. I can’t believe I would already be finishing up my first year–so much has changed since last August.

Chicago-Kent College of Law entering students

I also received exciting news that I am one of five finalists for a full tuition scholarship. I am so thankful to even be considered in the top five, and it would radically change my life if I am actually blessed with this gift. I am trying not to get my hopes up, but it’s so exciting to think of the possibility.

Surgery #2

There is still a small chance I won’t be able to do the summer class, but I am doing everything I can to make it happen. The only reason I would pull out is if a complication from my second surgery (April 26) is too great for me to handle on top of school.

As I mentioned before, there is a high chance of at least temporary damage to my vocal chords this time around. They are putting a large tube down my throat to hopefully prevent permanent damage, but in doing so, my vocal chords will be stretched and could be damaged up to six months post-surgery. We will have no idea until I wake up that morning. The Assistant Dean of Admissions has been so supportive and understanding–I can wait until the class is supposed to start and make my decision. She said she would easily shift my start to fall if I need to and I wouldn’t lose any money. She was the same person I talked with last August, when I had to defer school, so she has been following my story.

My story arc

Lately I have been noticing a certain redemption in my story that is starting to unravel. There has been a story-arc to the last eight months of my life which I could never have prepared for. Someone told me being diagnosed with cancer soon after moving across the country and then having to defer law school a year is just a “detour in my life,” but I would have to disagree. The longer I walk this road, the more I realize how instrumental this chapter of my life is. Instead of a detour, I believe it has firmly directed me down the road I was already journeying toward.

While I still have another surgery and a few more months before I can see if I am cancer-free, the countless blessings and answers to endless prayers I have seen realized in the last month is the hope I have been seeking and waiting patiently for. Thank you, Jesus.

^“In those days when you pray, I will listen.If you look for me wholeheartedly, you will find me.I will be found by you,” says the Lord. (Jeremiah 29:13-14)

My April calendar picture…

Needle biopsy, Round 2

March 9, 2013May 10, 20135 Comments

There has been quite a development and shift of events since my last post. I was under the impression I wasn’t going to be able to have my needle biopsy done until after Italy. Well, turns out the scheduling person was confused by the two appointments I scheduled with her. She told me I was having another ultrasound this week and my appointment April 2 was my biopsy.

I got a call this week with instructions for my “procedure” Thursday. I was confused because they told me not to eat 8 hours before and this shouldn’t matter with an ultrasound. After several transferred phone calls and several confused hospital staff members, I learned I was having my biopsy this week (two days a go) and my appointment April 2 (which they said was also a biopsy) is the follow up.

Apparently my endocrinologist wanted to make sure he saw me as soon as possible after my trip to Italy and after he returns (he’s gone for over week after I get back). Even though he is fully booked through April, he scheduled me for my follow up to discuss results of my biopsy, the first slot he could on the day he gets back, which happens to be a slot reserved for biopsies. This is what confused everyone. The hospital schedule has me in a biopsy slot, but only because my doctor was adamant about seeing me then. It certainly brought some comfort to know my new endocrinologist would go out of his way to fit me in as soon as possible when he returns.

First Needle Biopsy (August 2012)

My first needle biopsy was our first attempt to learn if I have cancer. Most people know I am stubborn when it comes to pain, and I can mentally convince myself something doesn’t hurt. I must admit I take some pride in my ability to not cry in physically painful situations. There have been few times when I haven’t been able to hold back tears.

I vividly remember my first needle biopsy. They were only sampling one spot, so they didn’t numb me. However, it was a particularly difficult spot to biopsy, so it took them four times to get useful cells. I was fine the first three sticks, but the fourth time I couldn’t control it anymore, and I started to cry. Still, it was also one of the most tender moments for me, because while my eyes were closed and I silently cried, my surgeon gently dabbed my eyes and cheeks with a tissue. He was very sweet, and while I was in there alone, he made me feel cared for.

Second Needle Biopsy (March 2013)

I had my second needle biopsy Thursday, March 7, and this time around was a different experience and unfortunately, more painful. I went to a different hospital, because my endocrinologist ordered the tests, not my primary doctor. As a result, instead of having one nurse and my trusted surgeon, I had two doctors, and two medical residents around me at different points in time. It was louder, busier and a less private appointment. At least one of the male residents was flirting with me between the ultrasound and biopsies. hah. 😉

My biopsy last fall dealt with a lymph node that was very easy to feel and see from the outside of my neck. This time, however, I was getting a biopsy because several spots appeared on my scan after radiation treatment. Because they are not obvious to touch, they were using an ultrasound to find where they were going to biopsy and then they went into each spot.

I have had a few ultrasounds on my neck by now and most of the time they put a ton of gel and while it feels weird, it doesn’t bother me at all. This time, however, they put very little gel on my neck and they pushed so hard on my neck that it actually hurt… a lot. I was anticipating the biopsies to hurt, but not the ultrasound. Unfortunately, I already started to tear up before any needles touched my skin.

Then the doctor came in to prep me for the biopsies. He told me they decided to biopsy four spots on the right (even though there are also spots on the left), and they would numb each spot. Well, unfortunately each time they numbed me, they went in twice with a needle–once deep and once right under the skin–each time injecting a burning, painful solution for about 45 seconds. With four biopsied spots, this meant eight painful numbing injections, not to mention the biopsies themselves. The last spot also required a much larger needle, which finished off the procedure with quite the bang.

Each biopsy, they shimmied the needle back and forth on the masses under my skin, shaving off cells to use as samples. Needless to say, as the numbness wore off the next couple hours, some intense soreness and pain lingered from the internal damage done. Two days later, there is still some remaining soreness.

However, I did laugh quite a bit when I first saw myself after the procedure. They used an orange sterilizing solution on my neck which had the appearance of a terrible fake tan, and the accumulation of all the numbing made the right side of my face numb and eye droopy. It was quite the sight.

I’m very happy this is over, but even more pleased to hear that I should hear my results Tuesday, (March 12), before I go to Italy. I was concerned they would hold out until my appointment April 2 to tell me anything. It would be hard to wait nearly a month to hear results. No matter what though, I’ll be headed to Rome on Wednesday with my dad, and I can’t wait.

Current Soundtrack

You call me out upon the waters.
The Great unknown where feet may fail
And there I find you in the mystery;
In oceans deep my faith will stand.

So I will call upon your name
And keep my eyes above the waves.
When oceans rise my soul
Will rest in your embrace,
For I am yours and you are mine.

Your Grace abounds in the deepest waters.
Your Sovereign hand will be my guide.
Where feet may fail and fear surrounds me;
You’ve never failed
And you won’t stop now.

So I will call upon your name
And keep my eyes above the waves.
When oceans rise my soul
Will rest in your embrace,
For I am yours and you are mine.

Spirit lead me where my trust is without borders.
Let me walk upon the waters
Wherever you would call me.
Take me deeper than my feet could ever wander
And my faith will be made stronger
In the presence of my saviour.

I will call upon your name
Keep my eyes above the waves
My soul will rest in your embrace
I am yours and you are mine.

Thyroid cancer follow up scan

February 27, 2013May 10, 20135 Comments

Today I met with my endocrinologist to discuss the results of my first tests done since radiation (neck ultrasound and blood work). The goal was to see if the radiation I was given after my full thyroidectomy and radical neck dissection surgery had taken care of anything remaining.

Unfortunately, not only does it appear radiation did not take care of everything, there is increased soft tissue density in comparison to the scans taken when I was unexpectedly hospitalized a few weeks after radiation. As a result, it is likely I will have to undergo another surgery sometime in the next couple months. While it cannot be confirmed right now, my doctor said he would be very surprised if the tissue was benign, because:

The tissue has increased
I had about 3x the amount of radiation the normal patient receives, and if there was any remaining loose tissue that was not cancerous, it should’ve all been killed off by the level of dose
I have high thyroglobulin levels, which is considered a “tumor marker.” If everything was gone, they would expect the level to be less than 0.1–my level is 4.2.
There was one mass they were able to measure as 1.3 x 0.7 x 1.1 cm (which is pretty large, especially in the tight muscle grouping in the neck), and several smaller masses.

So what now?

March 7: Another ultrasound to see what kind of change there has been since the last scan (about 3.5 weeks will have gone by).
March 13-22: My dad and I go to ITALY! He has business for only three of the days and the rest of the time we will be able to spend together exploring. We might even go on a day or two trip to Greece while we’re there! I couldn’t be more excited for the time away. Growing up, whenever we went out as a family we’d say we’re going to “party like a bunch of Norwegians:” 🙂
April 2: Needle biopsy of all the masses they are most concerned about after the ultrasound
End of April/Beginning of May, surgery?

The good news is, we are very close to the right dosage of thyroid medication! We are hardly a fraction away, and because I’m awesome, I don’t even take a dosage that they manufacture now. I take one pill everyday and once a week I take one and a half pills. Because it is a long-acting drug which accumulates over time, I’m able to do this. Science is fascinating, isn’t it?!

It seems like such a prolonged timeline. It’s hard to believe because of my endocrinologist’s availability, It’ll be over a month until the biopsy. I’m trusting nothing drastic will happen between now and then–we’ll see. I really shouldn’t be complaining, it is such a privilege to have access to these kinds of tests and facilities. It’s humbling.

If I have surgery, they will follow up with another scan three months later to see if I need radiation or if I’m clear…this will once again be around the time I am supposed to start law school. I am PRAYING this doesn’t come full-circle. It would be disheartening to begin another year and have to pull-out again for medical reasons. We’ll cross that bridge later, I have scholarship applications to finish 😉

Overall, I am doing very well with this less-than-pleasant news. I’m at peace and calm. Right now, the main concern I really have is if surgery will interfere with the Indianapolis mini-marathon I plan to run on May 4. 🙂

There’s a peace I’ve come to know
Though my heart and flesh may fail
There’s an anchor for my soul
I can say “It is well”

It’s a new year.

January 9, 2013May 10, 2013Leave a comment

It is just over a week since the new year, and it has already been an eventful year. January 2 was my 23 birthday and early in the morning my sweet nephew Oliver was born! I am already in love with this little boy and we get to share our special day for the rest of our lives–I feel privileged.

Aunt Lydia and her little lamb, Oliver Daniel.

I spent a couple days in Indianapolis visiting my brother, sister-in-law and little Oliver. It was such a special time. I can honestly say, he has been such an inspiration of hope for me the last few months. I have been looking forward to his arrival, and I find some redemption in his birth on my birthday. Thankful for this little miracle.

When I returned to Chicago, my friend Matt was in town from California for his brother’s wedding. Matt and I played music in the Blue Devils and RCC indoor percussion for three years together, and it was wonderful seeing a familiar face. We ended up at a blues club that plays live music seven days a week. It was an awesome find.

New Year Resolutions

Some people are wary of new year resolutions and skeptical. I have never made many in the past, but I think the idea is lovely. It is a chance to make a fresh start and try to challenge ourselves and grow. This year I have made a few commitments and with so many questions about my future right now, they have rejuvenated my drive and given me a renewed sense of purpose.

First, I will be more available. Bob Goff, in his book Love Does, encourages his readers to be more readily available to others. He specifically refers to answering the phone, and not letting it go to voicemail. I am going to be much better about this, and this will be a huge challenge for me.

I have never been a huge fan of talking on the phone. I’m awkward, I often pace while I’m on the phone, and I never know how to end a conversation naturally. It seems silly right? If you have talked on the phone with me, you’ve probably quickly noticed this. In any event, I am putting my fear aside and being much more readily willing to answer the phone and not let it go to voicemail. Call me? 🙂

Second, I am going to learn how to live more sacrificially. With a group of 18+ other people, I am challenging myself to run 1000 miles (about 20 miles/week) and save $1000 throughout 2013. This money will send food to the Thai/Burmese border. With 18 people participating, we will run 18,000 miles and provide 274,000 meals for Burmese Refugees.

I hesitated to write about this, because I do not want this to come off as just as another “cool” thing I’m doing and to come across prideful. I share this will you in an attempt to share our deep rooted desire to grasp what it means to respond to biblical justice and respond to God’s heart for the poor and needy.

A friend of mine initiated this goal and talked about his goal to live more dangerously, sacrificially and generously in 2013. I am thankful for this challenge and for another year to seek those things that stir God’s heart–how special it is that he allows us to respond and participate in his story of justice.

Health Update

I have returned to the weight I was before I was diagnosed last August. I never gained that much, but it was enough for me to notice and enough to struggle emotionally. I had no control over my body, and it was certainly a struggle. It didn’t matter how much I went to the gym, how little I ate or how much I slept (or didn’t sleep), my body responded to the lack of thyroid and medication however it pleased.

I have always been able to control and maintain my health and body, and I didn’t realize how much I took that for granted. All of this was taken from me the last few months, and I was not emotionally or mentally prepared for it. I am thankful for the struggle and the time I had to spend reaffirming my identity without the exterior I was used to. I’ve always been confident in who I am, but I didn’t realize how much I depended on my physical strength to present this confidence.

Here’s to a new year, improved health and new beginnings.

Here’s to new adventures.

Thyroid regulating–14 weeks post-surgery

December 7, 2012May 10, 20131 Comment

This week I met with two endocrinologists to begin regulation of my thyroid medication. I mentioned in the last post that I was concerned that I had reached a “new normal,” but this week gave me hope.

My blood work showed my TSH level at 3.389, which as I said before, is in the normal range of 0.5-5.0. When I received these results before going to the endocrinologists, I was very discouraged, because I still don’t feel “normal,” and I have several hypothyroid symptoms that remain. I didn’t think they would increase my medication like I’ve been praying for. Increased medication = more energy, higher metabolism, etc.

Below is a chart that explains a little bit better the difference between hypothyroidism and hyperthyroidism. Since I’ve had my thyroid removed, I was immediately hypothyroid and regulating medication is trying to get to the norm which is between hypo and hyper.

;

What I learned this week, however, is that even though this TSH level would be acceptable for anyone with good health history, it is not acceptable for anyone with thyroid cancer. The goal with any thyroid cancer patient is to get the TSH as low as possible so that the thyroid cells, cancerous or not, are not encouraged to grow. In order to lower a TSH level, thyroid hormone medication must increase. Which means victory! ha 🙂

Endocrinologist 1

I met with the first endocrinologist on Tuesday. I have not had a good experience with this doctor, and I have been seeing him since the day of surgery. Unfortunately, he has always left me feeling like more of an inconvenience than anything else. Every time I go to see him, I have to tell him why I am there and where we are in the process.

When I unexpectedly was in the hospital for two days because I was having trouble breathing, the hospital told me to see my endocrinologist a couple days after I was released to tell him all that happened and see if he had any input. The office didn’t sense my urgency when I called to make an appointment, and I had to practically beg to have an appointment even five days after I was released. When I went to that appointment, my doctor started with, “so, it looks like I told you we would meet in four weeks, why did you come so early?” He made me feel very foolish for making an appointment with him addressing concerns of breathing difficulty before our next scheduled visit. He finished with, “You’ll be fine.”

This week, he didn’t remember that he had ordered blood work for me to start regulating my thyroid. I had to ask if he got the faxed results, which he somehow misplaced, and then tell him what they were. In any event, he gave me the first glimmer of hope by telling me he would increase my dosage from .125 to .137 mics. I was thankful for any sort of increase because I desperately want my energy back and to be seeing results from going to the gym daily, as opposed to working so hard to maintain the weight I have.

Endocrinologist 2

I had scheduled another endocrinologist appointment for the day after this one, in hopes of finding a doctor that I have a better rapport with and someone who I can trust. I am very happy to say that I had a great appointment with this new doctor, and I will be seeing him from this point on. He intently listened when I told him the hypothyroid symptoms I’m still having (which ideally will be solved with correct dosage) and responded to my concerns with grace.

The best part is that he didn’t believe the increase from .125 to .137 was sufficient for someone who has no thyroid, thyroid cancer and continuing hypothyroidism. So, he increased my dosage up to .150 mics and said he wouldn’t be surprised if I end up getting bumped all the way up to .175. I’m so thankful I chose to seek out another doctor, because this adjustment will be instrumental in getting closer and closer to feeling the way I did before surgery.

While it will take up to six weeks to see the complete effects of having higher medication, just the knowledge that my body is getting more help is giving me hope to press forward. I’ve been reading a lot lately about how God promises to make us new. He doesn’t look at us in shambles and shake his head in disappointment. He draws near, taking our brokenness, our pain, our sorrow and making something new, something beautiful.

“See, I am doing a new thing!
Now it springs up; do you not perceive it?
I am making a way in the wilderness
and streams in the wasteland.”

Isaiah 43:19

14weeks post-surgery

Radioactive and Quarantined (Day 1)

October 17, 2012May 10, 20132 Comments

This morning I went to the hospital to begin radiation treatment. They took me to a “radioactive zone” room and told me all of the precautions and things I will have to do while I’m quarantined. While I waited to begin treatment, I surveyed the underwhelming room and found it pretty humorous.

Apparently, enough patients have mentioned that they would feel much more at ease if there was an element of nature in the solitary room. There were two tiles directly above me that were “clouds” with lights, and they changed in brightness…what? haha.

Eventually, they took a pill out of a metal box, quickly left, and I swallowed it. Just like that, I’m radioactive.

I remained in the room for only a half hour, but they left a nice Women’s Health magazine for me to read. I learned certain beauty products that are “tricks” v. “treats,” as well as the proper bra to use in your early twenties (and every decade afterward)–what an educational half hour for this I-was-a-tom-boy-most-of-my-life-and-I’m-still-learning-to-fully-grasp-being-a-woman-in-her-early-twenties. I mean, I only started carrying a purse about a year a go… I still have a lot to learn. Expert ladies, how on earth do you fill a purse? I am always impressed by women who have full purses that they could probably fit themselves inside. Tell me your secrets.

That half hour felt like a TLC show.

When my radioactive level was low enough to leave the radiation room, I rode in the back seat of my uncle Steve’s car (soon after the receptionist asked him if he was my husband), and went directly into the room in his house where I will be staying for the next eight days. Other than pressure in my head, uneasiness in my stomach and being tired–I feel just fine so far. I am prepared that over the next few days it’ll all settle in a little more. We’ll see!

I am starting to unpack my “bags of tricks” for this period of solitary “vacation.” Thanks to wonderful friends and family, some of the things I have to look forward to include the following:

Reading Material (many that I am re-reading):

Glorious Ruin by Tullian Tchividjian
Storyline by Donald Miller
Love Does by Bob Goff
Life Interrupted by Priscilla Shirer (Thanks Kristen!)
The Man of Grace and Grit: Paul by Charles Swindoll (one of my undergrad textbooks)
The Knowledge of the Holy by A.W. Tozer (also one of my undergrad textbooks)
RELEVANT Magazines

Watching Material:

Netflix
Pinky and the Brain (Two complete seasons…YES)
The Office, Gone in 60 Seconds (Thanks Skodas!)
The Good Shepherd
School of Rock
Up
Tangled

Projects/Activities:

Writing letters!
Cross-stitch
Origami (Thanks Kristen!)
Puzzles (Thanks mom!)
Coloring Books (Thanks Katie!)
Compiling a personal cookbook from my own stash of recipes and friends. I’m still looking for recipes to add and want as many people’s involvement as possible. It’s so much more fun knowing who to thank for each recipe 🙂 If you have any favorites, please e-mail them to me! lydiajoyness@gmail.com
Riding my bike on its trainer, starting day 3!

While I’ve found stuff to keep me busy, I can’t wait until I can get outside and enjoy my city again. Yesterday was beautiful, and I went to my favorite spot near our apartment and enjoyed the skyline and fresh air. Until we meet again, Lake Michigan, keep fresh (and so clean, clean.)

View of the Chicago skyline from Montrose Harbor. (Lydia Ness; Oct. 16, 2012)

Stage of Cancer and Radiation Treatment

October 4, 2012May 10, 20137 Comments

Today I learned more specifically the staging of the cancer and how radiation will progress in a couple weeks. I also had a nice conversation with my radiologist about cycling, too :). Anyway, this is what I learned today:

Stage of Cancer:

There are three categories they use to stage in thyroid cancer: (1) thyroid tumors, (2) lymph nodes and (3) metastasis (the spread of the cancer).

They were able to tell me the stage of (1) and (2), but since I only had scans and surgery on my neck, they don’t know how far it has spread to be able to mark a stage of metastasis.

(1) My tumors were papillary carcinoma–> Stage 2
(2) The expanse of the lymph nodes that were affected–> Stage 3
(3) Metastasis–> ?

Therefore, my condition is at least Stage 2 or 3, without the information of the metastasis. Because of this, my radiologist said that I will be receiving two-three times the dose of the average person receiving the same treatment.

Radiation and how it will work:

One function of the thyroid gland is to produce thyroid hormones that meet the body’s needs. In order to do this, the thyroid uses iodine. Essentially, fully functioning, the thyroid is the iodine center for the body. Now that I do not have a thyroid, the goal is to find all remaining thyroid tissue in my body that could have metastasized from the cancer. How? By killing any tissue containing iodine.

I will be doing “radioactive iodine ablation” treatment (RIA)–also called I-131 treatment. As many of you have read, I have been on a strict low-iodine diet for almost a week and will be until radiation. This is to starve my body of iodine so that the treatment is more successful and targets the potential cancerous tissue. I will be taking a pill of radioactive iodine, and the hope is to kill all remaining cancer.

What treatment looks like:

October 11: I will get my blood drawn to see if my levels are where they need to be to start treatment.
October 17: I will start the radiation. I will go to the hospital, they’ll give me a pill, and I’ll stay there for an hour or so to make sure I don’t have any serious reaction.
Then, I will be quarantined for 8 days. During this time I will be confined to a bedroom and bathroom that no one else can use. I have to use separate plates and utensils and wash them separate from other household items.
October 21: On the fifth day of being quarantined, I get to start my new thyroid medication and EAT NORMAL FOOD AGAIN! 😀

Follow up:

When I’m out of quarantine, I will get a full body scan to see what thyroid tissue activity is left in my body. Then, in six months, I will have another scan to see if I need a second treatment.

“The house of religious cards ‘that glory built’ collapses when we inevitably encounter unforeseen pain and suffering. When the economy tanks and you lose your job…When the waters rise and the levee breaks…[when you’re diagnosed with cancer]… Suddenly, the mask comes off, and the glory road reaches a dead end. We come to the end of ourselves, in other words, to our ruin, to our knees, to the place where if we are to find any help or comfort, it must come from somewhere outside of us. Much to our surprise, this is the precise place where the good news of the gospel–that God did for you what you couldn’t do for yourself–finally makes sense. It finally sounds good!”

Tullian Tchividjian, Glorious Ruin.

Lydia Joy Sharp

striving to act justly, love mercy, walk humbly

Tag: Thyroid cancer