The Good Cancer

When I was first diagnosed my doctor told me I was lucky because I had the “good cancer.” The surgeon told my husband that I was “unlikely to die.” Throughout this journey I have been on many different web sites as I have researched and tried to learn more about thyroid cancer. One woman who was told she had the “good cancer” felt that no doctor should tell someone that they have a good cancer, that instead they should tell them that they are unlikely to die. On another site a person complained about being told that they were unlikely to die and wished instead that her doctor had simply reassured her that she had the good cancer. It seems that no matter what our doctors say that they can’t win.

I’ll admit that I have had struggles with the label of “good cancer.” I know how lucky I am to have a highly curable, easily treatable cancer. On the other hand I have CANCER! The last month in our house has been consumed by the fact that I have cancer. I had a surgery, I have been exhausted, I have had  another hospital stay, I have not been allowed to touch my husband and children, I have not been allowed to prepare food. Did I mention the exhaustion? Cancer has affected our daily lives in a profound and significant way. It has frightened my kids. So yes, when I hear someone say that I’m lucky because I have the good cancer I get a little cranky.

Of course when folks take the cancer too seriously I don’t like that either. Extend too much sympathy and I’ll quickly remind you that I am not dying because I have the “good cancer.” We are still figuring out how to balance the seriousness of cancer with the reality that this particular kind of cancer is rarely life-threatening.  It’s a tricky tightrope walk and I don’t want to lean too far either way. I have the hope of a cancer free future but the reality that I will have to have tests for recurrence for the rest of my life. I have the joy of a relatively short treatment time with the reality that in that short treatment time my kids experienced a lot of sadness and insecurity and that my husband ran like an energizer bunny to keep up with all that we had going on in our life.

I’m not crazy about hearing “it’s the good cancer,” I didn’t like being told that I was “unlikely to die,” I don’t want too much sympathy…So, what do I want? Well, I’d love to not have cancer. I think that is what it boils down to. In all that I have read on the internet and what I have felt this month, I have realized that no one will be able to say quite the right thing because they can’t take away this diagnosis of thyroid cancer and they can’t give me this last month of my life back. So, the best I can do is to acknowledge that this has been hard, very hard and remember how grateful and lucky I am to have the “good cancer.”

RAI – I 131

Many of you know that I recently received RAI but might wonder what it is and what it was like. Now that I’m home and have access to the computer I thought I’d fill you in on my adventures the last few days.

RAI also known as radioactive iodine is the primary treatment for thyroid cancer. The success rate is amazingly high. Iodine ingested into our bodies is used by the thyroid in the production of thyroid hormones. The thyroid is in charge of metabolism. Prior to RAI, patients have a few weeks with a low iodine diet. This prepares any thyroid cells (regular or cancerous) to suck up any iodine that enters the body in its iodine deprived state. The iodine in this treatment is radioactive so the theory is that the thyroid cells that suck up this iodine are killed by the radioactivity. In my case, I had a total thyroidectomy (TT). Despite the TT there was the possibility of thyroid tissue/cancer cells that may have been left behind. The idea is that the RAI will kill any of those cells. In the future this will also be instrumental in checking for recurrence as any thyroid cells in my body will be a clear indicator that there is a problem.

What was RAI like? It was like no hospital stay I have ever had. I was admitted (after much confusion – who gets admitted without a surgery?) and taken to the top floor of the hospital. The door to my room was not exactly welcoming! 

The floor was draped in paper, 

the remote and phone were encased in plastic bags,

and the door handles had rubber gloves tied on them. There was a large trash can with a red, hazardous waste bag inside.

I met with the nurse who gave me a gown and some large plastic bags. All my belongings that I wanted to take home with me went in the plastic bag, into a metal drawer – no touching allowed. Anything I used would stay in the room – my toothbrush and books would be left behind. I met with nuclear medicine and radiology who discussed what my next few days would be like: no visitors, flush 3 times, all food served on disposable plates/trays to be thrown in the red lined trash bin, nurses would come in briefly but wouldn’t stay to chat and would be in full protective gowns. We also discussed my discharge rules: days 1-5 maintain about 6 feet from family, days 6-10 maintain about 3 feet from family, spouse in a guest bedroom, no sharing a bathroom with the rest of the family, disposable plates/silverware/cups for me.

This is a photo similar to what I took. My phone was safely
stored away so that it could come home with me!

Finally it was time for that lovely blue pill. My radiologist called it the “magic bullet” because it does such an amazing job at curing thyroid cancer. Everyone cleared out of my room except the nurse from nuclear medicine. She opened a lead box and removed a smaller lead box. That box was opened to reveal a closed vial with the pill inside. She handed me the vial with lead tongs and instructed me to swallow it. Done. I then had to drink more water to make sure it wasn’t stuck in my throat anywhere. She quickly left and the door was securely closed (no window on my door). So my isolation began. My nurse came in with meals and that’s about it. She would peek in the door and ask if I needed anything but there was not a lot of chit chat. Nuclear medicine came in with a Geiger Counter to find out where in my body the pill was – that was weird. After 2 hours I was encouraged to drink, a lot, to eliminate the radiation from my body. The faster my levels of radiation went down the faster I went home.

Wednesday arrived and my levels were dropping but unfortunately at the end of the day I had one reading that was close but not quite low enough. The right side of my neck (where the cancerous nodule had been located) was still too high. I was doomed to another night in the hospital. The good news was that by Thursday morning my levels were at an acceptable/legal limit for me to leave isolation and go home.

There are very few side effects of RAI – I suffered a few in very minor ways. I have had a little bit of nausea, a bit of stomach upset, some loss of taste (loss of taste is replaced with a metallic taste, which I notice when I drink water), and a little bit of neck soreness. All in all some minor inconveniences when you think about other cancer treatments.

What comes next? I’m eagerly counting down the days until I can hug my family (9 days). I’m looking forward to going back on Synthroid (2 days). Anticipating the end of the low iodine diet (2 days).  Ready for the full body scan that will show where any uptake of the RAI occurred- we are hoping for the neck only, where we expect it to be – lungs or other places in the body are bad as that would indicate that the cancer has spread. We have every reason to believe that it did NOT spread (5 days).

I’m sorry to report that I don't glow in the dark and I haven't developed any superpowers, but I have gained an appreciation for human touch (missing it), felt cared for by the hospital staff (thanks), and feel completely loved by my family and friends (I have amazing people in my life). 

Going Hypo

Going hypo has also been written about as “hypo hell.” For the past 2 weeks I have not had a thyroid (duh, I had a thyroidectomy) and have been off of Synthroid, the replacement thyroid medicine. I was doing ok. Initially I was tired but that could easily be attributed to recovery from the thyroidectomy. I did notice a bit of a slowing down but I was getting through the days. It was easier for me because the kids were in school, I’m not working, Ken and the kids were helpful with laundry, dishes and other chores. I began to think I would get through this stage relatively unscathed.

 

I visited my endocrinologist on Wed. and told him I was feeling ok. I had a blood test to measure my TSH levels to see how hypo I was. I needed to be at 30 prior to receiving the radioactive iodine treatment. By the time Ken got home that evening I told him that I felt like I was starting to crash. I just felt more tired than I had been feeling. Thursday was ok, but I noticed a significant difference in my energy levels. On Friday we got the news that I was indeed hypo…my TSH was at 49. It will only continue to rise while I am not taking Synthroid.

 

Today, Saturday, I crashed and burned. Yes, I entered hypo hell. Ken had planned to run a half marathon today and with my full and complete approval he went. He was the top Master! I managed to crawl out of bed by 9 but was pretty groggy. I set the kids to work on some chores and cleaned up some dishes and quickly retreated to a chair to nap. It took me about 45 minutes to summon the energy to shower. I had high hopes that the shower would revive me, but no such luck. I headed back to the chair where I slept and tried to summon more energy to take the kids to a local event that they had wanted to attend. I realized that there was no way that I was going to be able to drive them there, walk around a bit and drive home. So I cried. That’s about when Ken came home. Poor guy – he should have been on a post-race high, instead he walks in on me crying, depressed and exhausted. I’m a lucky woman, he said all the right things, reminded me that I missing a critical hormone that my body needs and that this will pass!

 

So today, I slept, watched some tv, read a little, and slept some more. I had a few more breakdown moments – I still have about a week left without my little Synthroid pill and at times I wonder how I am going to get through it. My head feels like I am in a complete fog. I know I can do it, but I’m dreading it.

 

I’m scheduled to go to the hospital on Tuesday for the radioactive iodine treatment. I had a conversation with the nuclear medicine department and found out that I cannot bring in a laptop, phone or library book (unless I’m willing to leave it there 2-3 months to decontaminate). So I think I’m stuck with daytime tv. I guess the good news is that at the rate I’m going I’ll be sleeping all day anyway.

 

I’ll be in the hospital 1-2 days and will only be released when my radioactive levels reach a low enough point, but even then it will be several days until I can have contact with people. Ken and I have been talking about this and I realized how hard it is going to be to go several days without human touch, to go about a week without seeing and hugging my kids. I think I dread that more than these tired feelings that I have.

 

On a side note, I’m feeling extremely grumpy about “springing forward” tonight. I could really use that extra hour of sleep!

Results and next steps...

I met with my endocrinologist this week to get the pathology results as well as make plans for the future. I left his office feeling very encouraged. The great news is that the lymph node that was removed ended up having no cancer. Additionally, the cancer was contained to the nodule and had not entered into the thyroid. This seems to be a good indicator that the cancer had not spread, was removed during surgery and that treatment will be successful. I had been hesitant to fully accept the high cure percentage touted for thyroid cancer until I learned that my cancer was well contained.  I feel much more confident that these high success rates will apply to me after my meeting this week!

So, what comes next…We are waiting for my TSH levels to hit 30 and I continue on a low iodine diet while I wait. Once I hit that magic number 30 my doctor will make arrangements for me to be admitted to the hospital to receive radioactive iodine to ablate (kill) any thyroid tissue/thyroid cancer that remains. It’s heavy duty stuff – once I return home I will still be radioactive and will have to remain isolated from the kids and Ken. The doctor noted that by sleeping together I could destroy Ken’s thyroid. So, he will be stuck in the guest bedroom for about 10 days.

I’ve been feeling good these past few days. My incision is healing nicely, I’m getting good range of motion in my neck and I haven’t been too tired…that is until today. Today I crashed. I’m getting that foggy brain feeling that I associate with my TSH levels rising. I hate feeling this way but I’m also glad because that means I’m one step closer to wrapping up this little episode in my life. (Little disclaimer here – if this post is unclear/disjointed I blame the lack of thyroid hormone, I started feeling really funky this evening.)

I’m off to get some sleep but I wanted to let you, my friends and family, know that we received great news this week!

Where Does Beauty Lie?

I don’t think of myself as a vain person, at least I didn’t until I realized just how bothered I was by my appearance post thyroidectomy. I warned Ken to prepare the kids, I found myself cracking jokes about my “head transplant” and referring to myself as Frankenmom. While I was still in the hospital I did all I could to avoid catching a glimpse of myself in the mirror.

My family was nothing but supportive. Katie, who tends to get queasy at the first hint of something gross, didn’t seem to bat an eye when she viewed my scar. Ken, was full of reassurance and he continues to remind me that it’ ok, it’s not scary, and that it’s going to heal. Dylan’s reaction was perhaps the one that truly challenged me to reevaluate my reaction and attitude toward my current appearance.

I had been home from the hospital for a few days and was having a conversation with Dylan. He kept looking at my neck and I could tell he was distracted. We paused our conversation and I asked if he would feel better if I put on a scarf. He responded, “No way, it’s so cool.” He went on to give it a touch. Later, at dinner he commented, “If I had a scar like that I’d make sure everyone could see it.”

So there it is, my twelve year old son would show his scar to the world. I’m an adult and it took me about a week to gather the courage to really look at myself in the mirror. So, where is the answer? For me, I think it’s somewhere in between Dylan’s show it to the world view and my cover my head with a blanket mentality.

I haven’t been able to see past my scar to my beauty this past week, but I have seen beauty. I’ve been blessed with cards and words of encouragement. I’ve received unexpected and heartfelt gifts that will help me through my treatment. Ken and the kids have allowed me all the time I needed to rest and showered me with love. I’ve received Facebook messages, emails and phone calls and have felt the love and care of our friends and family both near and far. That to me is true beauty. I’m learning that the redness of a line on my neck is far less important than the richness that comes from community with others.

I’m still wearing some lovely scarves when I go out and about (I had my first outing to Target the other day). The scarves were a gift and they make me feel good. I also admit that it’s refreshing to look in the mirror and just see me – sometimes that scar was a visible reminder of things that I don’t want to be thinking about all of the time (scar=thyroidectomy=cancer).

I’m sure that there will be days when I look at myself in the mirror and think that maybe it would be better if the mirror just came down. I’m not sure I’ll ever look at my scar and think, “Cool – gotta show this off” (at least not until it diminishes to a silvery line). However, I am working on a healthier balance.

I’m writing these blog posts so that I don’t forget the emotions I’ve felt and the things that I have learned on this journey. In honor of remembering, I’m also posting a photo that shows my scar almost a week after surgery. It’s a reminder to me of where I have found beauty in these days- in my family and friends who have surrounded me with love and support.

Another Adventure?

I was scheduled for a thyroidectomy this past Friday (Feb. 21). What wasn’t scheduled or planned was the diagnosis I received that I have thyroid cancer. Let me say from the beginning that thyroid cancer typically responds well to treatment with a very high success rate (most places quote a 95% success rate). As my doctor said, no one wants to hear that they have cancer, but if you are going to get cancer, thyroid cancer is the kind to get. So we are still processing and getting information but I wanted to take a moment and share my story in more detail. My journey with my thyroid has been a long one but we see God’s hand at work and His protection of us.

In 2011, Ken and I were making the decision to move to Lithuania for Ken to take a position teaching at a Christian university in Klaipeda. Making the decision to uproot our lives, move to another country and  quit our jobs was not an easy decision. I had hesitation, doubts, and even a few panic attacks. Ultimately what it came down to was that Ken felt a sense of calling to go. I didn’t feel a calling to go but I didn’t feel a calling to stay either. After much thought and prayer, together we took a deep breath and stepped into the adventure of living overseas.

Our first year was a good year but also a hard year. We made the decision at the end of the first year that we would stay one more year but that Ken would start applying for jobs in the US. We felt that we needed to return for the sake of the kids, both for their education and for their socialization. As we entered our second year I decided to make use of the national health insurance we had and visit a doctor. I had been feeling tired – a sure sign that my thyroid medications might need adjustment. I was referred to an endocrinologist in Klaipeda and had a shocking first visit. Yes, my meds needed adjustment but more importantly, he completed the first ever ultrasound of my thyroid.

I was diagnosed with hypothyroidism in 2003, shortly after moving to Canton, OH. Our new family doctor did blood work when we joined the practice and saw that I had hypothyroidism. She treated me with medication and that was it. I remember asking her what had caused me to start being hypo? Should I see a specialist? She was very nonchalant and explained that it was easily fixed with medicine and there was nothing to worry about. I believed her.

Flash forward to October, 2013 in Klaipeda, Lithuania. The endocrinologist was shocked that I had never had any doctor perform an ultrasound or regularly examine my neck. He walked me over to another room and immediately performed an ultrasound. He discovered 2 nodules on my thyroid, which he proceeded to biopsy. The results were inconclusive. Lithuania follows the EU standards for care, which take a watch and wait approach in response to a first inconclusive biopsy. He said that I should have another biopsy in 6 months.

As all of this was occurring Ken was interviewing for jobs. He eventually accepted a job in Birmingham, AL. The only sticking point was that the job had a required start date of January 2014. Ken pushed to move that date back so that we could finish out the year in Klaipeda but it was non-negotiable. He took the job, but we were disappointed at having to leave mid-year.

Soon after our January 2^nd arrival in Alabama, I scheduled an appointment with an endocrinologist who looked at the scribbled translation of my report from Klaipeda, checked out my thyroid on the ultrasound and scheduled a thyroidectomy for Feb. 21^st. I didn’t have another biopsy. My doctor felt that with the size of the nodule, the fact that we had no real idea how long the nodule had been there, and the inconclusive biopsy, the most prudent course of action was immediate removal of the thyroid.

One of the good things about thyroid cancer is that it is slow growing, but that’s of limited comfort to me right now.  Because I was diagnosed in 2003 but had years in which no one looked at my thyroid, I’m left with worry that the cancer has been there for all of that time.

So where is God in this? If I had not gone to Lithuania, I have no idea how long it would have taken for the nodule on my thyroid to be discovered. We ended up back in the US much earlier than we planned and for a long time we couldn’t make sense of it. It makes sense to me now. I was able to avoid that 6 month “watch and wait” protocol and have a surgery scheduled. The importance of this was driven home to me when my doctor told me, after the surgery, that it was good that I had come in when I did. So, many of things that didn’t make sense to us are now forming this picture of a God who lovingly put us exactly where we needed to be. I believe it is more than coincidence.

So we are taking it one day at a time. They did remove my thyroid, I have a lovely scar to prove it. The surgeon also removed an accompanying lymph node that looked cancerous. We will get better pathology reports at the end of this week. In the meantime, I am no longer taking my thyroid medication and am on a low-iodine diet in preparation for Radioactive Iodine therapy that will take place in a few weeks to make sure that the cancer is gone. I’m recovering at home with the help of Ken and the kids who are cooking, doing laundry and taking most excellent care of me.

Sometimes I get scared. Saying those words… I have cancer. It’s a scary thing. I think maybe it was worse for Ken, hearing from the doctor that it was cancer and then having to tell me. It didn’t help that the doctor chose the phrase, “Your wife is unlikely to die from this.” It was a positive message with maybe not the best wording.

So this is where we are today. Ken has been going like crazy all weekend. Taking care of the kids, doing laundry, buying special low iodine food for me, just to name a few of the things he has been up to. Should I mention the fact that we have been in our house only 2 weeks and that he’s also figuring out a new job. The kids are worried and a little scared. Prayers for them would be greatly appreciated.

As for me, my throat is feeling better every day. I’m not loving the look of the scar on my neck but can look at it without cringing right now. Scarves will be my friends for the next few weeks when I have to leave the house. I have moments when I get scared, especially when I think of the years I was treated with only medicine with no one looking at my thyroid. What I try to do is count my blessings – I’m so grateful my doctor in Lithuania gave me such excellent care, I’m grateful that we are back in the states so that I can communicate with my doctors and caregivers, I’m grateful for my friends and family who have reached out in these recovering days with words of care and encouragement, and I’m grateful for my husband and kids who have surrounded me with love. I’m trusting in the knowledge and care of my physicians here in AL but mostly in the care of the Great Physician who holds me in His hands.