Reflecting on this Christmas Season

Sometimes I have so many thoughts and want to write eloquently about them, but get overwhelmed by all I wish to say, so I don’t write at all. Weeks will go by, and I’ll wish I had taken the time to sort through it all.

Normally I sleep like a baby on planes, but last night, even though I was completely exhausted, I couldn’t seem to rest, so I figured it was time to write.

I spend a lot of time alone these days. I have always enjoyed alone time, but I admit, it can be pretty isolating when you’re living in a new city and being alone is not chosen, but instead imparted on you. When you’re pushing through recovery, it can be overwhelming emotionally to be alone for long periods of time. You notice the details of how different your body feels, and it is an impressive mind-game not to obsess over each change.

I recently read somewhere that it is easy to look in retrospect and see how God moved in the past, but it is harder to take time to acknowledge how he’s moving now. However, I believe this has been my biggest hope and prayer over the last several months, since being diagnosed with cancer. With each day, I find myself reverting back to questions of how I see God moving in the littlest details, and I am reminded of His presence.

I feel so close to Him these days.

However, I have also realized the danger of glamorizing suffering, and downplaying it. Pain exists in the world, and it is a result of the broken world we live in. It reminds us that the world is not as it should be, and points to the need for a Redeemer.

With this in mind, I have learned the importance of calling suffering for what it is and not reverting to what Tullian Tchividjian in his book Glorious Ruin says is the “Oprah” approach—always recounting suffering only for the good that resulted.

While I agree that character is shaped and relationships can be strengthened through suffering, placing suffering in a category that states its existence is always for a greater good, is dangerous. Suffering is painful, and I pray we can approach suffering by first acknowledging that frankly, well, it hurts. This is something I have been learning.

I naturally want to showcase the good in what I am facing and sometimes forget to face these difficult situations honestly. Facing suffering head on and initially calling it for what it is, has been essential for my understanding of the world we live in and why I place my hope in Christ, the Redeemer. I am thankful for that.

I find this year I am humbled and overwhelmed by the season of Advent—the season of expectation—and Christmas.  In the wake of suffering and this season of my life, the birth of Jesus, the Redeemer of all that is broken, holds a truer meaning.

While this seems to be a heavy post, I assure you that it is because I am so deeply impacted by Jesus’ presence and guidance during this season of my life. I can truly say he is walking beside me. There will come a day when pain and suffering will cease and all that is broken will be restored and made new. This is all I can think about heading into Christmas and the New Year, and it brings me great joy.

 

Merry Christmas, friends.

 

a-charlie-brown-christmas

Thyroid regulating–14 weeks post-surgery

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.

aaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaahyper_hypo_thyroid

;

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

14weeks post-surgery

Radioactive and Quarantined (Day 1)

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

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.

Memorable Weekend, Pre-Radiation

I’m several days into the pre-radiation routine–strict low-iodine diet (see previous post) and no thyroid medication. I meet with my radiologist this Thursday to hopefully get more information on my dosage of treatment, length of being quarantined and likelihood of multiple treatments. Prayers would be appreciated!

This past weekend was such a blessing. I started all of the pre-radiation methods Friday morning, and made my first 3.5 hour drive to Grand Rapids, Michigan to visit my cousin Melissa at her school. The drive was stunning, the fall colors are in full swing, and I thoroughly enjoyed listening to some great music and taking it all in.

Friday night, Melis, her friends and I walked to downtown Grand Rapids to watch the release of hundreds of lanterns over the river. If you have seen the movie Tangled, you have a good idea of what I’m talking about. In any event, it was one of the most stunning sights I have ever seen. Would have been a great date 😉

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The next day, Melissa and I spent the whole day doing fall-festivities that I truly missed the four years I lived in California, and one of the main goals for the day was to make a bunch of food that would follow my low-iodine diet. We went to a local orchard and bought apple cider, apples and pumpkins to carve.

We spent the day cooking–we made pumpkin bread muffins, spicy pumpkin seeds (from out freshly carved pumpkins 🙂 ) and for dinner we made chicken with cinnamon apples. Everything we made turned out very well, and it definitely lifted my spirits. Not to mention we watched The Hunger Games during dinner, which of course was awesome. I was beginning to think I was going to be eating oatmeal, fruits and vegetables every meal for the next several weeks :). Now, however, I have great motivation to make so many things, hopefully in large quantities so that I have left-overs.

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I cannot express how much the changing seasons does my soul well. It brings me so much joy. When I start to feel the weight of what I’m walking through right now, it often only takes looking out the window and breathing in the crisp air to revitalize. There is so much beauty in the world–even in the most unlikely places.

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After returning from such a memorable weekend in Michigan, I was blessed to end Sunday watching football with great company. I mean how much better could the weekend have been?? Well, my roommate’s dad and sister visited last night and we watched Here Comes Honey Boo Boo–that’s how! Weekend complete. 🙂

I’m definitely starting to feel the weight of not being able to take any thyroid medication. I’m uncomfortably tired all-day, everyday. However, I am still keeping active, laughing the usual uncontrollable amount and even exercising when I feel my heart won’t explode ;). It is very clear to me that my strength is not of my own.

Timeline of Treatment, September-April

It has been 3.5 weeks since surgery, and yesterday I met with my endocrinologist to get a timeline of what my treatment is going to look like. While he was not able to give me more information about the treatment itself, he did give me a timeline for the next several months.  I thought the next step was going to be another CT scan, before heading straight into radiation, but he said the cancer was extensive so a scan is pointless–we’re just diving right in on the process. Here is my timeline for the next several months:

Now until after radiation: Adhere to a low-iodine diet

Food to avoid:

  • Iodized salt and sea salt and any foods containing iodized salt or sea salt.
  • Seafood and sea products
  • Foods or products that contain these sea-based additives: carrageenan, agar-agar, algin, alginate, nori
  • Dairy products (milk, cheese, cream, yogurt, butter, ice cream, powdered dairy creamers, whey, casein, other dairy products).
  • Egg yolks or whole eggs or foods containing whole eggs. Egg whites are ok.
  • Commercial bakery products. Avoid bread products that contain iodine/iodate dough conditioners.
  • Red Dye #3. However, Red Dye #40 is OK. We suggest that you avoid red, orange, or brown processed food, pills, and capsules.
  • Most Chocolate (for its milk content). Cocoa powder and some dark chocolates are permitted.
  • Some Molasses.
  • Soybeans and most soy products (soy sauce, soy milk, tofu).
  • Some beans besides soybeans.The National Institutes of Health diet says to avoid these beans: red kidney beans, lima beans, navy beans, pinto beans and cowpeas.
  • Rhubarb and potato skins. The inside of the potato is fine.
  • Iodine-Containing Vitamins and Food Supplements.

Foods to limit:

  • Fresh meats. Up to 5 ounces per day of fresh meats such as chicken, beef, pork, lamb and veal
  • Grains, cereals. Up to 4 servings per day
  • Rices.

September 28: Stop taking thyroid medication

This will likely be the start of the hardest part of the process. I have been taking replacement thyroid medication since I had my thyroidectomy and feel pretty exhausted in any event. Taking no thyroid medication will essentially leave me without a metabolism. I will struggle with being even more tired than I am now–all day. I will be completely off of any thyroid medication until after radiation (~3 weeks).

I am allowed to exercise during this time (of course this was my first question to the doctor, hoping this will give me a fake sense of metabolism and jump-start my days 🙂 ). However, my doctor was frank with me and said that he is certain I will not want to–even though physically it is not harmful. He doesn’t know me too well 😉 Challenge accepted.

October 4: Meet with my radiologist

I will meet with yet another doctor–my radiologist–to learn more specifically what radiation will look like. The treatment I will be doing is called radioactive iodine ablation (RIA). I will take a pill and the goal is to kill all of the remaining cancer cells in my body.

I know having the RAI treatment will make me radioactive, and I know that I have to be quarantined for a certain amount of time, depending on the dose. I know I have to avoid children and pregnant women for a certain amount of time, as well. However, I have no clue just how long for anything, because they are hoping to do a high dosage of RAI because of the extent of the spread. We’ll see!

October 11: Get blood drawn

After being off of my thyroid medication for 13 days and on the low-iodine diet, I will get my blood drawn to see if my levels are where they should be to start RIA.

October 17: Begin RIA

Depending on my blood results, I will start RIA this day. I’m hoping being radioactive means I glow. How cool would that be?

October 21: Begin new thyroid medication

On the fifth day of RIA treatment, I will start a new thyroid medication that I will take once in the morning and begin to regulate. I will be on this medication the rest of my life. I have heard stories from people who have had difficulty regulating this medication, so I’m hoping for an unusually fast regulation period. This will be when I begin to feel closer to “normal” again!

November 26: Meet with my endocrinologist sometime this week

Six weeks after starting my medication, I will meet with my endocrinologist to see exactly how the medication is affecting me and to make adjustments accordingly. After this meeting

December: Meet with my ENT

I get to meet with my favorite doctor again! He was my surgeon and ENT through this whole process and he wants to check on the healing of my neck again.

April: CT scan

I thought that all of this would be done by the end of the year, but because of its extent, my endocrinologist seems to think that a second round of RIA is a definite possibility. Six months after the first treatment, I will get a CT scan done again, and if there is anything remaining, I will start the process of no medication/low-iodine diet again and start a second round of RIA.

In any event, I’m doing well. I’m blessed by those around me who continually fill me with joy. Your cards, Facebook messages, tweets, texts and phone calls mean the world to me. While I never really know how to express thanks enough, please know that I deeply appreciate every act of kindness from each of you.

The song below is a song that has been a favorite for a long time. I want to encourage you that God is making beautiful things out of us. He is taking this situation I’m in and turning it into something remarkable. I’ve already begun to see the picture he’s painting, and it’s the beginning of something beautiful. I pray this song brings you a little hope today.

“Beautiful Things” – Gungor

All this pain
I wonder if I’ll ever find my way
I wonder if my life could really change at all
All this earth
Could all that is lost ever be found
Could a garden come up from this ground at all

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

All around
Hope is springing up from this old ground
Out of chaos life is being found in You

You make beautiful things
You make beautiful things out of the dust
You make beautiful things
You make beautiful things out of us

You make me new, You are making me new

Pushing Through Recovery and Seeking a Meaningful Story.

Two and a half weeks have past since my full thyroidectomy and lymph node removal surgery, and I am reluctant to admit that it has become difficult. The first couple weeks I was pushing through the pain of the surgery and the little inconveniences of recovery, but the process of healing in that regard was relatively simple for me to push through mentally. It was surgery after all, it made sense that pain would come, and it made sense that I would be down for the count for a week or so with all of the antibiotics and anesthesia in my system.

Now, however, since my wound is healing very nicely, and I’m gaining more mobility in my neck, I desperately desire to be able to go about life normally, but my body will not allow it. I feel very tired all day and while I can go out for a chunk of time–even the majority of the day or the majority of an evening–I cannot make it through a full day of walking around or even talking without getting exhausted. I really do not want this to be a woe-is-me blog, so please bare with my transparency and honesty.

It is definitely a mental battle. I have never been forced to rest for this long. I am used to being able to get up early, exercise, accomplish an extensive “to-do” list each day and feel pretty energized even at the end of the day. Deferring law school a year because of being diagnosed with cancer four days before starting was difficult, but not as difficult as dealing with the frequent thoughts I have these days:

“What are you doing with your life now?”
“Why are you just sitting there?”
“Why are you wasting time?”
“How are you helping others by laying on a couch?”

I have committed myself to a daily devotional each morning and have learned that if I read immediately when I wake up, I can read what I planned to before my nausea and exhaustion settles in. It has certainly helped start my day off on the right foot and kept my spirits high. I look forward to being able to read more throughout the day and growing more in knowledge and understanding. For now, it is hit or miss each day if I will be feeling well enough to read and comprehend. It’ll come though, I know that.

I want to make a difference in this world, and it is hard for me to be confined to my apartment for much of the day. I want to go out and talk to people. I want to love strangers, seek justice for the oppressed and pursue opportunities that place me in optimal position to impact people for good.

Right now, I need to seek more silence and prayer. There is nothing else I can do at this point, and I am finding peace in that. From living in California, working four jobs while going to school full-time and being part of a world-class percussion group to—-> moving to Chicago, being diagnosed with thyroid cancer, having no school and work only two nights a week for a couple hours…I do not think it is an accident that I’m being forced to slow down. It is time to truly evaluate what I want the rest of my life to look like when I complete radiation and get back to full health in the next few months.

I am so thankful that my favorite author, Donald Miller, just released a new book called “Storyline: Finding Your Subplot in God’s Story.” It looks like it is going to be an excellent resource for planning a life that has a meaningful story. I hope that while I’m quarantined for radiation treatment, I can spend time working my way through this book. I meet with my endocrinologist on Monday to talk about the treatment.

In everything though, I continue to be reminded of how blessed I am and how beautiful the people in my life are. Thank you for your encouragement and steadfast love through this journey. While I like to pretend I can do this all on my own, I am willing to admit that I am wrong. I would not be where I am today without all of your love and support. If you have made it through the end of this post, you are one of those people, and I just have to say from the bottom of my heart–Thank you.

“My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.” Ps. 73:26