thyroid cancer

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What is Ethanol Ablation for Thyroid Cancer?

(at the end of this post, check out the downloadable I made for anyone with “good cancer.”)

This week I had two treatments of ethanol ablation for my thyroid cancer. What, you might ask, is ethanol ablation?

Good question. I didn’t know, either, and had a hard time finding information about it other than medical journals and academic papers online. I wanted stories, examples, personal perspectives, and there just aren’t many.

Quick overview: I was diagnosed in September 2018 with thyroid cancer (thyca). In November, I had a total thyroidectomy (TT) but no neck dissection. The tumor was big but didn’t involve any margins so we assumed the doc got it all.

In January 2019, I took the next step of treatment, radioactive iodine (RAI). This involved taking a radioactive pill and going into isolation until my body stopped being nuclear. This also seemed to work.

In July 2019, I had a follow-up ultrasound which revealed a suspicious lymph node. This was biopsied and proved malignant. Cancer was back, or rather, still there and now exposing itself. In January, another lymph node popped up.

Enter, ethanol ablation.

This is a procedure that isn’t done in very many places in the USA, but is done at Mayo Clinic in Rochester, Minnesota. It is only an option if there are three or fewer involved lymph nodes, if they are of a certain size and type of cancer, and if they are in locations amenable to the procedure. If these requirements are not met, surgery is the way to go.

After several consultations with multiple endocrinologists, a surgeon, a radiologist, blood work, ultrasounds, etc, we concluded that my cancer was a good candidate for the ablation treatment.

This certainly sounded better to me than another surgery. Though the first surgery, the one that removed the thyroid, was a much bigger deal since it removed a vital organ, a second one has risks involved, would mean more complicated future surgeries should thyca continue to poke up its head in my neck (which is pretty likely with this kind of cancer that is quite literally, a pain in the neck), and would require a much longer recovery time. It would also leave a scar from my neck to my ear, but I don’t care about scars. I kind of like them, even, in a dark and morbid way.

Ethanol Ablation could be sort of compared to a biopsy, or maybe a biopsy on steroids. Only instead of taking something (tissue) out, the doc puts something in (alcohol, or ethanol).

Under ultrasound guidance and with loads of lidocaine numbing up the area, and numbing it way down deep, the doctor very carefully injects the affected lymph nodes with small amounts of ethanol. The amount varies, depending on the size of the node. It needs to be done very carefully because should the ethanol leak onto nearby structures, they would be damaged.

It is done while the patient (ie, me) is awake and trying desperately to not move and to not think about what is going on in the neck. This is both to avoid general anesthesia and to enable the doctor to check in with the patient. For example, she had me talk to her a couple of times to make sure my vocal chords weren’t being impacted.

Depending on location, size, number, etc, the procedure can take between 30-60 minutes.

Of course the lidocaine helps but of course the lidocaine burns going in and isn’t 100% effective in masking all pain.

How to describe the pain?

For me, filling the first node was fine. Well, not fine, but with deep breathing, I got through it. The second one? DANG. I actually cried, it hurt so bad. And I have given birth to two of my three children without any pain medication (the other one was a c-section, so bring on the drugs).

Burning pressure are two words I could use, though “pressure” doesn’t sound all that bad. It was bad. It was all I could do to not jerk my head away but to stay still and tell myself, this is healing me, this is good for me.

Then it was over. Take an ice pack, load up on Tylenol, go watch a movie or take a nap.

And in the morning, go do it again. Twice, to give the darn cancer a one-two punch. To check on what was going on in the nodes and to fill them up again.

Only this time, the neck is already tender and bruised and my mind knew what was coming. I’m not sure that was helpful or not. It made me nervous but it also helped me brace myself.

After the first treatment, I felt a little nausea though I’m sure that was more nerves and emotions than due to the treatment. After the second one, I suddenly got the shakes. I had to sit down on a ledge at the hospital and cry for a second before being ready to go home. I’m sure that was also emotion and not from the procedure.

In the car, I fell asleep. Then I slept another 9 hours and woke up with a swollen, bruised neck, but no other side effects.

I ran an errand that next day and thought, “Oh, I feel good.” But then the next thought was, “I had cancer treatment yesterday.” And I almost had to sit down. It still just seems bizarre, like another world, that I have cancer. Or maybe I don’t now. Maybe it is gone.

Ethanol ablation requires follow-up in 3-6 months. There is a decent chance that I’ll need to do the whole thing again. And there is always the chance another lymph node will pop up. Thyroid cancer apparently has a habit of not really going away, especially once it has acted like mine.

All in all, not a bad way to treat cancer. Not good either, the only comfortable thing about all of it was the warm blanket they wrapped me up in for the procedure (life hack: when someone asks if you want a heated blanket, the answer is always, “yes”).

I think the emotional and internal work of all this since September 2018 has been harder than the physical. But, for now, I’m putting it behind me and moving forward. There’s nothing else to do besides schedule the next appointments and take my medication every day.

Onward.

No Longer Covered in Shame

Quick link: Today I have an essay Unclean but Called Clean, at (in)courage.

When I was radioactive and in isolation, I spent a lot of time meditating on shame, fear, healing, and the power of touch, the power of hope, the power of being restored. Here’s what I concluded.


It is a strange and unsettling thing being a danger to society.

I went for a walk and swooped to avoid a woman walking her dog. I crossed the street when a man came toward me, pushing his toddler on a tricycle. The little girl waved and said, “Hi!” and I stepped even further away. I walked down the center of streets, to keep my body as far from animals as possible.

I felt like I should have shouted, “Unclean! Unclean!”

I had every right to go outside. I’d specifically asked my doctor if it’d be okay and she said yes, then backed away from me in the hospital room to demonstrate how far I would have to be from people and pets — a good eight feet.

Still.

What if I slipped and hit my head and people came to help? What if a dog chased me? What if a school bus dropped off a student, and I didn’t get away quickly enough? What if I saw someone I knew and had to ignore or rebuff them?

At home, I lurked in the basement. My mom delivered food but couldn’t stop and chat. I didn’t want her to stay long in the basement air or near my physical space.

I was unclean…


Read the rest of the essay at (in)courage

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Cancer Super Powers

Day 2 of butt shots, done. A very literal pain in the butt.

So far, so good. I don’t feel too many side effects besides an ache, a headache, and fatigue.

Tomorrow I have another round of blood work and then the bizarre part of thyroid cancer really kicks in. The radioactive iodine pill and isolation.

To prepare, a friend gave me lovely flowers, a book, and soup. I bought another book with a gift card from my sister, and a journal. My mom gave me sour candies for sucking on (recommended), lots of other goodies, and a hot water pot (for coffee in my Cancer Sucks mug from my other sister). I have an exciting writing project to work on. I have a list of personal reflection questions to process through.

I’m trying to view this like a retreat.

I still think I deserve to get at least one super power out of this radioactivity.

But upon reflection, I do get super powers out of it. Just like every other cancer patient.

We get fresh perspective.

We get profound gratitude.

We get to experience our own strength.

We get to relinquish control.

We get to exercise faith.

We get to be loved well.

Those are probably the best super powers, anyway.

(Though I still wouldn’t mind the ability to fly.)

A Cancerous Disruption and Next Steps

Last Thursday my husband and youngest flew back to Djibouti.

I was supposed to be on that flight.

See, ever since 2003, I planned to spend the first semester of the twins’ university year in the US. So our plan all along was that I would stay in MN from September through the New Year. Which meant it was a convenient time for me to get cancer.

Sure, it was a distraction. I hadn’t planned to spend days and days at the doctor’s office or recovery from surgery. I hadn’t planned on shouting to my husband across the ocean, “I HAVE CANCER,” because the phone connection was poor. But we took all that in stride, mostly. I had the time to do the appointments, I was already here. Heck, it gave me something interesting to do. I guess.

But, I did plan to get on an airplane January 3 and go home.

And now I can’t.

Now, cancer has disrupted not only my life, but also my plan.

I have written before that safety is an illusion, a western idol. I don’t believe in safety.

Now, I understand on a deeper level that the same is true with control. I like to be in control. I easily buy into the illusion that I am in control and willingly, if unconsciously, worship at the idol of control. One thing cancer will do for an otherwise perfectly healthy young(ish) woman who eats well and exercises regularly and strives toward peace relationally is to reveal that illusion for the emptiness that it is.

Control is an illusion, an idol.

I am not in control of my life, I never was.

It is time to stop believing in control, the same way I stopped believing, years ago, in safety.

The loss of safety and the loss of control could easily lead to a debilitating fear. Terror, disease, loneliness, brokenness could be lurking around every corner, better not leave the house. Better not fall in love. Better not have a family. Better not put my heart into creative work.

Or, I can relinquish safety and control and I can turn around and grab on again to faith in a good God, a God with the unchanging identity of God With Us, the whole point of the season we just passed through. Christmas. Incarnation. Immanuel.

**

There is a new plan, I hope to get on an airplane January 30. I’m making choices, like getting a visa, that assume this date will be my travel date. But I understand now that this is something beyond me. Then there will be other flights and plane rides to continue taking care of this #dumbcancer. And again, I can’t control those. I guess this is what a life of actual faith looks like.

**

Today, Monday, I start the next phase of treatment. It is actually pretty quick. A series of injections and blood tests and body scans, then a crazy radioactive iodine pill, then several days of isolation, more blood tests and scans, and then, insha Allah, I’ll be cleared to fly.

I’ll tell you more about the pill later. While it will render me radioactive, it will not, unfortunately, cause me to glow in the dark or develop the ability to fly. I asked. The only super power I will earn is the ability to set off airport alarms with my body(!).

Today, its just a shot and blood tests.

Here we go.

 

By |January 7th, 2019|Categories: cancer|Tags: , , |1 Comment

Gifts for the Cancer Patient and Caregivers

Comfort and Warmth

Socks. Seriously. Socks. I got wool socks and slippery fuzzy socks and If You Can Read This Bring Me Coffee socks. And my feet would have been so cold otherwise. But now they are both warm and funny. Before that, I only had running socks, not great for the hospital or Minnesota winter.

Softest blanket in the world. Softest anything in the world. Don’t worry about color or style. One of my best friends sent me a red and white blanket and what I see when I snuggle up with it (literally every time I sleep or sit ever since surgery), I only see her, our friendship, and her care for me. Of course the color is beautiful because she is awesome and has good taste.

Cute and comfortable clothes that fit around their particular cancer. Shirts or sweaters with low, open necks for head or neck cancers, that easily pull over their heads or are button up so they don’t have to pull them on at all.

Slouchy pants. For the hospital, for after, for looking relaxed but stylish, with pants that are easy to pull on and off if they are in pain, exhausted, or need to get them off right.now! (like this pair from Athleta)

Ice packs or heating pads. These might be for the wound, if surgery. For the burning sensation after radiation, or for snuggling with during the wild roller coaster rides of hot flashes and chills.

 

Soul Food

Soup. Chicken noodle, chicken wild rice, tomato, black bean, tortilla soup…soup. Warm, easy to swallow, healthy, delicious. Homemade or from a restaurant or the deli section of a grocery store…

Chocolate. Any and all. (the link is for Lindt. Hint, hint.)

Mints. Something to suck on during waiting room periods or after bad tasting treatments or to counter the grossness of medicines. (this is a link for specifically Fight Cancer mints. Starlite mints are also delish.)

Gift card to Trader Joe’s or Whole Foods. Some kinds of chemo or radiation (or my treatment: RAI radioactive iodine) can affect taste buds. Either by burning them, swelling them, or just changing them. I threw out a cup of coffee one day because it tasted like burned metal. Made a second cup, from the same beans, and it tasted great. Weird. #blamethecancer So a gift card enables the patient to get what might taste right that day, to their weird taste buds.

 

Beauty and Humanity

Pedicure or manicure. Also, pretty nail polish, again a gift idea for people like me, who don’t have a lot of disposable cash. Or, ask if you can give them a pedicure or manicure yourself.

Do their makeup, or hold up a mirror so they can do it. Especially if they are in the hospital for a few days. The first day I put on makeup (and I am an extreme minimalist in terms of beauty products), I felt my morale swing upwards.

Lotion. Skin dries out from treatments, cold, surgery.

Essential oils. My doctor even had some for me to put on my surgical gown. Hospitals and sick rooms smell gross. This can really pick up the mood. (I haven’t used the product specifically linked to here, full disclosure)

Cute headbands, scarves, or hats. Even if they haven’t lost their hair, or won’t, they might be cold if they’re in the hospital for a while, or just want to feel pretty while their face is puffy and their scars heal. There are a lot of cute ones out there.

Hair appointment. Depending, this one is sensitive, I know, so check in on how they are feeling and doing with their hair. My kind of cancer and treatment (most likely) does not affect hair. Maybe a hair cut or color, maybe just a fun up-do.

Time out together, or in their home or hospital room when you don’t talk about cancer. I’m so thankful that I got to participate in my soon-to-be new sister-in-law’s wedding dress appointment and cake tasting. I was exhausted and have foggy memories of these events as they were three days post-surgery, but I’m so glad I could participate and feel human and also celebrate and focus on someone else for a while (she’s awesome, way to go, Kevin!). A friend had to drive me to these events, and wait for me, and drive me back. What service and practical love that showed me.

 

Entertainment

Movies (even a list of suggested titles, no need to spend a lot of money. Chemo brain fog or post surgery exhaustion makes it hard to make decisions or even remember things, like what we were watching before)

Puzzles. I do puzzles as mindless, relaxing therapy. In fact, I have an article forthcoming from the New York Times(!) about just this thing. A friend sat with me, three days post-surgery, and we did a hot air balloon puzzle as long as I could stay sitting up. We talked and I felt like I wasn’t utterly boring to her, and also that I had been mildly productive.

Books. Audio or print or digital.

Or gift cards for these things.

 

Stress Relief

Tea. Chamomile, turmeric, lemon ginger, apple cinnamon, vanilla…

Sleep mask.

Massage. A gift card or just give them one when you visit. Again, this isn’t about big money. You’re visiting, that’s awesome. Rub their feet or their hands or their shoulders. Post-surgery, my upper back ached like crazy, from the position my head had been in during surgery.

Cancer Sucks mug. I put this under stress relief because it is funny, which relieves stress. My sister sent me mine and when I drink from it, it gives me a little reminder that yeah, this is hard. Coffee (or tea or hot chocolate) is also delicious. It tells me to enjoy the deliciousness in the midst of the sucky thing. In other words, to fight for joy and to be thankful.

Something for their spouse and children. Babysitting, date night, something fun and not cancer related, a chance to be a kid or a man or a woman.

**

Merry Christmas and I hope that whoever in your life has cancer will feel blessed, held, comforted, provided for, and loved. And that, you, the caregiver and loved one also feel blessed, held, comforted, provided for, and loved.

Any other great ideas for cancer patient gifts?

p.s. This is also a list for cancer patient caregivers. You need lovin’, too.

*contains affiliate links

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