Lather. Rinse. Repeat.

It had been some time since I'd really thought about my thyroid cancer. It had been so long, in fact, that I had stopped worrying about regular screenings until a few weeks ago. I went to my regular thyroid appointment, all ready to talk lab work and the usual blah blah blah. I'd even had Lane come along with me for the ride. He sat dutifully in the corner while my doc pulled out the blood work.

"Your tumor marker is elevated. Let's do an ultrasound."

*Whips head around. Excuse me, whaaa?

*Sound of tires screeching to a halt.

Still not quite soaking it in, I hopped up on the table as she dimmed the lights and slid the wand across my neck.

"That spot we were looking at last time measures a little bigger. Oh, and there's a new one right next to it. Let's schedule a full body scan and, if the scan lights up, go ahead and do radiation treatment immediately after."

*Sound of record player scratching to silence.

The flood was coming and I couldn't stop it. I burst into tears with Lane looking on (and starting to freak out on me). Not because we are considering a cancer recurrence, mind you, but because treatment sucks rocks. My mind flooded to surgeries and radiation that wrecked my health in so many ways. To the crazy debacle that was my radiation treatment where I had to go into seclusion for 5 days when Lane was just a baby. To the surgeries that left me with a super cool Franken-neck. To the low-iodine diet that must be carried out to the 'T' in preparation for testing. To the blood work. And the blood work. And the blood work.

Here we go again.

Lather. Rinse. Repeat.

I left with my mind wandering out of control. I think I knew this day would come, but denial can be pretty sweet, amiright? Not long after though, I gathered my thoughts enough to realize I had a choice in the matter. Last time I was a scared new mom who did what she was told without thinking twice. I know my docs have what's best in mind, but I'm glad the fear doesn't have quite the hold it used to.

I can't do radiation again. I just can't. Surgery, maybe. Sometimes I wish I could go back and start over. Maybe my treatment would have looked different. Maybe it wouldn't have. I don't know. I do know that I'm a little more armed this time. Armed with years of dealing with this disease and the effects. Armed with years of trying to treat my son's health issues. Armed with God's protection from the fear I used to feel.

So here I sit with a steaming cup of my low-iodine coffee (yup, started that diet yesterday. Ugh.) in preparation for the three day testing scheduled in two weeks. Immediately after we have Rowen's nurse coming for his third in-home infusion for his PANDAS/PANS. So you might say we have a few things going on.

I feel like we are just a hot mess over here at times. Sometimes I want to throw in the towel and say forget it. It's too much. I also know that gets me nowhere, so I get back up and keep going. Don't we all? At least, I hope we do. And maybe I'm getting ahead of myself. The scan might not show anything, so that's where I'll ask for prayers. Let's hope nothing lights up. Let's also hope I get through this stupid diet because I'm gonna miss my chocolate like you wouldn't believe.

Love me some chocolate. Sigh.

And I guess this coffee's not so bad.

Living With It

Things have been looking up. Not much has changed by way of my health, but my mind has had to make a major shift. When cancer is the diagnosis, you ready, aim, and fire until it's all gone, right?

Surgery. Check.
Radiation. Check.
Surgery again. Check.
CT scan. Sonogram. CT scan again. Blood work. Blood work. Blood work. Check. Check. Check.

Ever since my diagnosis in 2011, I followed doctor's orders to the umpteenth degree to get rid of my thyroid cancer. Side note: my insurance company must love me. With every visit I'd ask the same questions. How's it lookin', doc? Did we get it? Is it gone? After awhile though, I noticed a disturbing trend. No one would ever give me the all clear. Instead I'd get, "Your numbers are looking better," or "We aren't seeing much on your scans."

Sounds kind of nice, but not quite the total obliteration I was looking for.

About 6 months ago, I had an epiphany. I realized that it may just be something I have to live with for the rest of my life. I'm sure there are people out there that have the all clear, but my experience seems to be that it will nickel and dime me forever. My recent visit to my doctor went something like this:

Doc (running his fingers across my neck): "Hmm, is that tender?"
Me: "Nope."
Doc: "Have you been sick lately?"
Me: "Nuh-uh."
Doc: "Hmm, well this could just be a muscle I'm feeling. It's probably nothing. By the way, we need to schedule your sonogram, don't we? Oh and that nodule in your lung, let's make sure we get that checked too."

Subtle, doc.

My latest reminder that I still don't get to increase my life insurance because no one can say I'm cancer free. I will say that my CT scan revealed no changes in my lung, but stay tuned for the sonogram that will check out that "muscle" in my neck. Super pumped for that one.

Speaking of pumped, I worry about how my boys aren't faring with this. Don't get me wrong, they seem fine and dandy for the most part. I do think that having a mom that often drags them the doctor for her cancer screenings isn't the best part of life. A few weeks ago while drawing labs I passed out. My boys were with me and I know it scared the crud out of them. I vaguely remember my youngest telling the nurse over and over "I don't like this!" He also went with me to my CT scan and didn't want to touch me after because the machine said "radiation" on it. It makes me sad for them.

I really can't complain though. I don't really think about it a whole lot. I do have to manage my thyroid-less, autoimmune disordered life which isn't a walk in the park.

No gluten. Check.
No dairy. Check.
No soy. Mostly Check (THIS is the one I cheat on?!?)
Medicine dependent. Check.
Still feel like crap. Check.

So here's to living without the all clear, but still being grateful. I'm just sad my insurance company can't say the same.

Dear Kenna

Dear Kenna,

Your little cousin Lane says he has been talking to you. He is only four so I listen hard when he tells me this. He wasn't big on saying his prayers until your angel wings brushed his cheek. It was then that he would pray, always mentioning that I missed you.

But just as quickly as this began, it stopped. Lane told me he stopped hearing from you. He hasn't said a prayer since.

I remember the last time I saw you. It was two days before you died. You were in your bed on the eve of your eleventh birthday. We talked about your uncle Brenner bringing you pizza for dinner and how your cousins were downstairs wanting to see you if you felt up to it. I only had a moment but I stopped to wish you a happy birthday and gave you a swift kiss on the cheek before leaving. How was I to know it would be the last time I would see you?

Your cancer was like a thief in the night. It stole you away from your mom and dad all too soon, sweet girl. It stole you from all of us and we've barely had a moment to stop and figure out how we got here.

I remember the morning you left. A woman at the hospital was checking your grandma and me in and told us your little sister and Lane weren't allowed to go in with us. I looked at them dancing across the corridor without a care in the world and nearly choked on my words, "They told me she might not make it." Tears were falling and the woman began to cry too. A few keystrokes later and we were all heading to see you.

I was met by a few nurses who whisked your sister and my Lane away. I saw your mom. She was crying, wailing. You were already gone. I stopped for a moment but I pushed my way through the door to see you. I looked through the nurses waiting in front of your room as they stared helplessly at me. I walked in and there you were. You were surrounded by a roomful of nurses and doctors that had just come down from furiously working to keep you with us. Your dad pulled me to you and kept telling me to talk to you. That you could hear me. I didn't understand. Weren't you gone? I took your hand. I held on for hours. The room was thick with your presence, and later your grandma would tell me she wished she'd looked up to see you testing out your new wings. I wish I had too.

We watch for you now, hoping God will let you brush our cheeks as well. Hoping you will let your mom and dad know you are ok. Hoping your little sis knows too. I took her to a movie the other day and darned if the preview for Annie wasn't playing. I looked down to see her singing along. I knew she learned that song from you when you played in Annie last year. I can still hear you stomping on that stage when I hear that Hard-Knock Life song.

I am sure that you were my angel as I recently went under the knife to cure my own cancer. I imagined you were there as I was wheeled into the OR and I felt a little more at peace. Thank you.

Your cousin Rowen misses you too. You were his first best friend. I am sure he's sorry that he drove you a little nuts as you got older, but we'll just say that's how he knew to love you. Ok, and annoy you. What are cousins for, right? He sure loved you though. He always will. We all will.

 

So from time to time, feel free to brush our cheeks. Let your mom and dad know you are ok. We love you, Kenna. Always will.

Love,
Aunt Amanda

P.S. I was listening to an old Amy Grant song today, "I Will Remember You." I thought of you. Let's meet someday on golden streets. Deal?

I Will Remember You (excerpt)

I will be walking one day
Down a street far away
And see your face in a crowd
And smile

Knowing how you made me laugh
Hearing sweet echoes of you from the past
I will remember you

*This letter was shared with permission from my sister, Kenna's mom.

My Head's in the Clouds

I think I will always be in denial.

Cancer sucks, so sometimes I opt for denial. I don't even know that it is a conscious decision.

I just pulled an over-nighter for my second thyroid cancer removal surgery. I feel like a truck hit me. I have quite the scar lining my neck now to prove it. The verdict? This will probably go on forever. The doctor's report was that he found a few more lymph nodes in surgery so he took those out as he went. Kind of like playing Asteroids. Pew, pew pew. Got one. Pew pew pew, there's another! He said there is a good probability he got it all. He also said there is a good probability there is more cancer. How 'bout them odds?

I shared a recovery room with another equally sedated person across a partition that I never really saw until she left. The whole time I pictured an old lady recovering from gall bladder surgery or something. Hello, Amanda. You are at the James Cancer Hospital. No gall bladders here. Unless they are full of cancer.

I was naively shocked when I met a tiny, young mother on the other side of the room. She didn't have any hair. Her husband came in to help her with her drains and passed out. I heard all of this from my side of the room. He hit the floor and I realized how far reaching this stuff really is.

I could barely move from all the sedation, but after sleeping it off for nearly 24 hours, I hopped (well, maybe slithered) out of bed and blearily walked the halls for a bit to see it for myself.

I am in a cancer hospital. Everyone here is fighting. For survival. To be a mom. To be a husband. To be alive. Some win, some may not, but we all suffer.

I shuffled through the halls, very aware of the new scar across my neck and the looks I will probably get from now on. What happened to you? Are you ok? Maybe a touch of what that sweet young mother gets when she takes off her hat.

I feel like we are a giant social experiment. We are infected with cancer and all we can do is cut it out or chase it out with more sickness. Or die. How 'bout them odds?

I don't mean to be so sobering here, but I continue to be shocked at this little piece of the cancer world that I reside in. It is full of pain, both physical and emotional. It might, however be full of life if we choose to look there. It's hard to see in the dark crevasses of this cancer fight, but it's there. The mom who put on her hat and smiled at me as she left. Wishing me luck. The niece with Leukemia I once had, but will forever reside only in my heart now. The smiles of the kids on the cancer ward who indulge in laughter and find life despite the pain.

I am not sure where I fit into all this. I just know I need some Ibuprofin right now. They told me long ago this was the "best" cancer to have, and maybe it is. At this point I don't have to go through chemo or radiation therapy, but the cancer has never gone away. Despite my best efforts, it's been probably close to 8 years now, 4 of them in treatments and 4 in monitoring and testing.

This sucks but I am trying to find the silver lining. Some days it's shinier than others, but we'll keep at it. I replayed this song tonight that I love, thinking of the boy who wrote it and passed away not long ago from Osteosarcoma. Beautiful. Up in the clouds. Maybe with my niece. I bet their view is a little nicer. Just as he says.

Here's the link:

https://www.youtube.com/watch?v=7zxXAtmmLLc

In It To Win It

My boys are at the age where you should be able to look at my calendar and get an idea of my soccer mom status- minus the soccer in our family, of course.

Instead of loading the kids in the car with their shin guards and cleats, we load up to get mom to her next doctor appointment. Of course, it can't all be blamed on me. My kids don't do sports. One just plain doesn't like it, and the other one tackles other players with his teeth like Dracula. So instead we load up with mom saying, "Hey kids, it's time to go to grandma's! Mom has another doctor appointment!"

While thyroid cancer isn't the monster of all cancers by any means, it nickels and dimes until you want to wave the white flag. My new doctor has told me that since I have "only" had one surgery to remove cancer, I am among the few. I should definitely count on going under the knife several more times before all is said and done. I have recently done CT scans, biopsies, ultrasounds, and blood work to confirm there is still thyroid cancer in my neck. There are also some obscure nodules in my lung that no one can say for sure is cancer. All we know so far is that it isn't aggressively growing so that could mean it is nothing special, or it is metastases of the thyroid cancer.

For now, I have surgery on my neck again in a few weeks that I will have to pull an all-nighter (maybe two) in the hospital for. Super duper looking forward to that. Anyone want to homeschool my kid for a few days while I soak in some anesthesia and painkillers? I would also appreciate prayers because the cancer itself lies between my jugular vein and carotid artery. You might think I am kidding when I say I am going to ask the surgeon if I can see if his hands are shaky that morning. I might even give him a breathalyzer. I'm pretty sure I don't want either of those bad boys severed. Although I will say that my doc made me feel better when he said I can live without one of them. I forget which one. Let's hope he doesn't touch that one. I much prefer to live with both intact.

There are so many other things that cancer patients have to deal with other than curing the cancer itself. I have met with a long list of doctors in the past few years that I am convinced I would never have crossed paths with except for the radiation, and of course the cancer itself. Hence, mom fitting in another doctor appointment. It's commonplace for my kids these days, which has the welcome side effect of them not thinking much of it.

I often think of my niece who earned her angel wings following a short but painful Leukemia battle in May. She is my angel- and hero- as I go through this. I think of her every day but her presence is stronger when I find myself in another doctor's office, half the time with a needle in my arm.

 

 Keepin' in it to win it for you, sweet girl.

 

I love this picture of Kenna and her grandpa, my dad. Dancing on streets of gold now...





I Think My Doc Lied to Me

I think my doc may have lied to me.

My optimism has waned a bit. After my CT scan to show whether I had any spread to the lungs, I got a cheerful 30-second call from my someone at my doctor's office that said "He wanted you to know the scan was clear except for the cancer nodules we already knew were in your neck."

Call me crazy, but I think that was a lie.

Fast forward to my actual doc appointment where he goes over the results.

"Just an FYI, the scan showed several spots in your lungs. One was big enough that the radiologist thought I should point it out to you. Don't worry about it though. It happens all the time."

Don't worry about it? Huh? What just happened here?

While he assures me there are several benign reasons I could have spots in my lungs, it's still a hard pill to swallow given I have had cancer in my body for at least 7 years and it has already taken it upon itself to spread. Just for kicks, it may have thought my lungs was a good resting place. Call me crazy again, but now I am a little more concerned. I could deal with the nodules in my neck, even though my doc has reminded me that someone with thyroid cancer typically has several surgeries before calling it quits and I am only at lucky number one. That kind of blows too.

So despite my honing in on the lung issue, I think my doc is distracting me. He said we will deal with that after the surgery for the neck nodules. I feel like he is holding a shiny toy in front of my face while telling me to keep my eyes forward. Except that this toy isn't so shiny. And the distraction isn't working.

I was talking to a friend today who is also going through this cancer crap and he said he feels like he is going crazy at times too. Every symptom is another sign that God is calling him home. I am not really afraid of dying, but I found myself praying last night that I could just live long enough to see my kids grow into adulthood. Not even for me, but for them. I know I won't always be the cheese to their macaroni, but they don't need anything like that to happen to them.

I am also pretty let down by the cost of care. I switched docs recently to get a second opinion on the cancer train that was heading straight for radiation again. I didn't want that. I switched to OSU where the care is great, I am assured, but the cost is astronomical in comparison to what I am used to. For only part of my testing, I have racked up bills close to $25,000. I haven't even had treatment yet. Or met the surgeon. I didn't even get any anesthesia out of the deal. At least give me some of that.

So heads might be spinning at my extreme wavering between optimism and doubt. I guess that's the way it goes with cancer. We have come a long way, but we really haven't either.

I know I try to minimize what I am going through, because really in the end it truly isn't much compared to so many others. But I will step forward and ask for prayer here. I admit to being pretty unsettled about all of this. So if you would, keep us in mind as you kneel at the cross. I'll be there with you.

Cancer Rant

I must be missing something here.

I know the world doesn't go 'round perfectly, but c'mon.

Awhile back, this blog was titled something akin to the usual "fighting cancer" slogan we have all come to know well. I changed it to "Thyroid cancer on the run" because I just felt like I wasn't putting up much of a fight. That's not to say that I wouldn't have put up a fight if I had to, but as I looked around to others fighting cancer I really didn't fit in.

This isn't a self-pity rant, like boo-hoo, did she really just say she didn't fit in with the cancer fighting community? It's more of a how the heck could I be called a "fighter" when I had cancer for at least 3 years before I was even given full rights to the name?

So again I say I don't get it. Here's why...

My 11-year-old niece was diagnosed with Leukemia on May 3 of this year. I still can't believe I am writing this, but she earned her angel wings on May 30. Her entire cancer battle happened in less than a month. I won't tell her story because it's not mine to tell, but I will say she was up against a monster. Talk about a fighter. She was the ultimate.

I was so naïve. My heart broke for her, but never once did I think we would lose her. Never. How could I when my cancer had sat around for 8 years and never bothered to even stretch a muscle? My doc recently found cancerous nodules in my neck again and actually said they were probably missed in my last surgery. Gee, doc, that was 4 years ago. What the heck has the cancer been doing all this time?

He did wonder if it had spread to my lungs, so he ordered a CT scan to see. The bittersweet news came this week when the scan showed no sign of spread, but for those few little nodules in my neck. A little surgery later and it should be taken care of. No rush either. I may even be able to schedule it for the fall of 2022 and be just fine.

I mean no disrespect to those fighting thyroid cancer. I know it can be deadly and is nothing to sneeze at, but right now I just can't see that it really makes much of a difference for me. My perspective has completely changed. A little girl changed all that for me. I came out swinging with a toothpick, while she managed an arsenal of weaponry at the young age of 11.

I have been stuck with needles and an IV in recent weeks for my latest round of cancer testing and I thought of her every time. The test I had was on the chemo ward and the lady at registration asked if I'd had chemo that day. Chemo. Such a big word, but now I see it much differently. I saw her when I was asked that question. I saw her when they put a line in my arm. I saw her when I realized how much of a hero she is to me. She showed me how to come in swinging.

And while I don't feel right calling myself a fighter, I think I still might just win this war for her. It's the least I can do. Rest easy, sweet girl. I will follow your lead.