Many thanks to those of you who have helped our family out in one way or another over the last couple of months – whether it was helping the Husband move our stuff to the new place or providing meals or watching my kids. It has been a trying time for us – and continues to be. Your kind words, love and support are genuinely appreciated. I hope that you have felt that appreciation, despite my completely inadequate ability to convey those feelings of gratitude through spoken words. Again, thank you.
I haven’t been writing – at all – since the end of April. It kills me. I love writing stories. I wish I had the mindset for it right now. I wish I had the time. Alas, such is life.
Today, I’m going to write about myself. I don’t necessarily like writing about myself. I lead a simple, drama free existence (or at least, I did) – and I like that, but this has been a grueling year for me. And I want to write about it. For my sanity.
March was when the landslide of everything-coming-at-us-at-once started. But really for me, I felt like I was in funk (that I couldn’t escape) right after returning from our winter break. So – January. I was depressed. By March, when it finally started to warm up, the depression I was feeling began to lift, but then: landslide.
Work. House. Vacation. Moving. Infertility. Cancer. Surgery.
Not in that order.
I found out there was a 75% chance I had cancer two days before we left on a six week vacation. Awesome, right?
My endocrinologist recommended a complete thyroidectomy as soon as possible.
I told her it was going to have to wait.
But let me just go back and start at the beginning.
The Husband and I have been trying to have another baby – since July of 2013. You can probably tell how that is going since there is not a new tiny human anywhere to be seen.
In March of this year I was having symptoms that I thought might indicate that something wasn’t right (regarding my fertility) – so, when I went to see my normal doctor about my knee (which I’d injured at the end of December while snowboarding), I asked her about these other symptoms and mentioned that we’d been trying to get pregnant (for awhile). She recommended that I go see my OBGYN, so a few days later I went to see the ‘fertility specialist’ doctor at the OBGYN practice I go to. He noticed that my thyroid was enlarged on the right side and ordered an ultrasound of that area and some blood work to see if my hormone levels were normal (they were normal, by the way – of course they were – sigh).
**Let me just interject here the fact that I had not noticed any sort of lump in my neck. It was obvious once the doctor pointed it out, but before that, I was oblivious. I do have three kids. Mirrors do not get much of my time.**
I went to get the ultrasound. The ultrasound tech was very quiet and spent a long time looking at the right side of my thyroid. Red flag. A few days later, the OB calls me and says I’ve got thyroid nodules and that I should go see an endocrinologist immediately. I felt like he was washing his hands of me.
A week later, I went to see an endocrinologist. This was the third doctor I’d seen in a week and a half and I was very frustrated. I didn’t care about my thyroid. I just wanted to know why I couldn’t get pregnant! I had three nodules, she said. I needed to get all of them biopsied because of the size, she said. Awesome.
If you haven’t experienced a fine needle aspiration biopsy in your life, I hope you never have to. They had to stick me nine times in the neck. It ranks right up there with intramuscular EMGs in unpleasantness. I sucked it up – because the hospital was running behind (and therefore I was running behind) and I needed to get home in time to meet my then kindergartner at the bus stop – but by the end, I felt like I was going to puke. The procedure was also very expensive because they had to stab me so many times. If we didn’t have insurance, it would have cost nearly $5,000.
Two of the nodules came back benign. The third, and smallest, was atypical – that’s about a 15% chance of being cancerous, by the way. My endocrinologist told me we’d need to do another biopsy in three months for that atypical nodule (the tissue needs time to heal before you can repeat the procedure).
In the meantime, I went back to the OBGYN and told them I was taking care of the thryoid issue and asked what were the next steps in figuring out why I wasn’t pregnant. As I said, my hormone levels were completely normal despite the enlarged thyroid, so he ordered an HSG, which, of course, came back normal. An HSG increases your chances of getting pregnant for several months after the procedure, the doctor told me – “We’ll see you when you’re pregnant,” she said with a smile. Oh how wrong she was. I think at that point we’d been trying for eleven cycles. One more cycle to go before we would be considered officially and inexplicably infertile. Secondarily infertile, I should say.
The end of May rolls around and I get the repeat biopsy. It was worse the second time, even though they only stuck me four times. I felt like throwing up through the whole thing and my neck was sore for weeks afterward. A week later I go into the endocrinologist’s office to get my results. I had to wait a long time. When the doctor finally shows up she apologizes – the hospital had not sent the biopsy results. The doctor apologized some more, said she’d call me with the result on Monday. If I didn’t hear from her, I was told to call the office, so I did, Monday afternoon when I’d heard nothing all day. The next morning I called again – I was leaving the country that Friday and would not be able to take phone calls, I told them. My doctor called back that afternoon and I missed the call. In her message, she said she needed to actually speak to me to give me the biopsy results. Red flag. Phone tag ensued. Wednesday afternoon, I finally spoke with her.
Suspicious for papillary thyroid carcinoma.
My 15% chance of cancer shot up to 75%. That’s why they hadn’t sent the results over on time. In these cases, in cases like mine (me(!), I probably have cancer. What?!), the pathologist always gets a second opinion.
I cried when I told my husband.
We put our baby plans on hold. I had done my research. I knew that one of the treatments for this cancer was radioactive iodine, which you cannot do while pregnant.
We went on vacation and we closed on our house and we moved and then on August 11th, for the first time in my life, I had major surgery.
The surgeon’s guidelines were thus: he would take out the right side, then they would test it for cancer. If it was benign, they would leave the rest and give me a 50/50 chance of not having to take medication for the rest of my life. If the right lobe was cancerous, he would take the left lobe, too.
It was cancerous. I just knew it going in, so it wasn’t a surprise when the surgeon told me through a drug induced haze afterward that yes, he’d taken it all.
The next step is radioactive iodine because the tumor had breached the thyroid wall (though all my lymph nodes looked clean). At the end of October, I have to go get irradiated and then spend five full days in our basement, away from my family.
I am dreading it. I am dreading it so much.
And then I have to wait another six months before we can start trying to have a baby again. Not that I think a baby will happen at all then either.
I am hopelessly lost in a pit of despair and pessimism.
Doctors keep telling me, “Thyroid cancer is the best kind of cancer to get!” (I’ve even repeated those words to others myself – still don’t believe them). My endocrinologist said that my specific type of cancer is actually the second best kind to get within the hierarchy of best-cancers-to-get. I smile and nod and think to myself that these people – the endo, the surgeon, the oncologist – have clearly never had cancer. Because there is no ‘better’ cancer to get. There are better odds of survival only – because when you have cancer, you lose.
For some it’s their lives. I’ve known several myself – family members and an acquaintance in our young married ward at BYU – who was twenty seven years old when she died.
For me, it’s the expense of time and our family’s precious money; it’s peace of mind; it’s the knowledge that I’m not a ‘healthy’ person anymore; it’s the loss of my ability to be a free person.
I’m in chains. Chained to doctors. Chained to pharmacies. Chained to drugs.
I have lost my autonomy as a human being. I can never function as a normal person can function. I have been relieved of an essential, life sustaining organ. If there’s some horrific calamity and all the pharmacies go up in flames, I don’t have the choice of soldiering on. Without my medication, I will experience a slow death. Cheerful, right?
Optimism is one of my defining qualities.
And I’m not just dealing with the cancer. I’m dealing with the infertility, too.
Why has Heavenly Father denied me something precious and joyful and given me something bitter and debilitating instead? And filled my life with pregnant women who, through no fault of their own, are rubbing my infertility in my face?
I’ve had many friends who have dealt with infertility. My mother and mother-in-law, both have. I’ve always tried to be supportive and understanding – to do the right things, to say the right things for them. I thought I understood a little bit of how it must be; how it must feel. I did not understand… I did not understand at all.
It is heartbreaking and it is lonely and it makes you bitter and cynical and makes you angry with God. And I have spent many a night weeping silently as my husband slept beside me, feeling abandoned, wondering why there is no comfort and no voice from heaven telling me everything is going to turn out okay.
I have been denied a precious spirit from heaven and instead given cancer. It is galling and gut wrenching, to say the very least.
I don’t like to think about what has happened to me – mostly because the bitter feelings outweigh any positive ones, any hope, any optimism.
But of course, you don’t say things like this to people when they ask you how you’re doing. Because they don’t know what to say when the feelings you share aren’t all sunshine and rainbows. “Oh, you’re actually having real emotions and experiences that are hard to deal with….I, uh, don’t know what to do with that…” So, I don’t share it. I’ll give them a tentative ‘alright, considering’ or a shoulder shrug or a ‘pretty good’ on a better day.
I’m private. I’m drama free. I don’t complain or make a fuss about myself or my problems. But I’m scared and I feel alone. At times, I feel abandoned to my grief by my Father in Heaven. At church I put on my smile and pretend like I actually believe that everything is going to turn out okay… I’m really bad at pretending.
Thank Heavenly Father for this little boy right here:
Who, even when he destroys my stuff, can charm himself back into my good graces pretty fast. He makes me smile. Every. Day. Heavenly Father knew that I would need him to get me through this hard time – when my hopes and dreams would be crushed over and over again. Through it all, there is this little boy’s smile. And his giggles. And his hugs and his kisses. And his tutus. Oh, the tutus.
So, here I am. And this is my life right now. And this is how I actually feel about having ‘the best kind’ of cancer.
Thanks for reading,