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

10 Cancer Thanksgivings and Some Grief

In 2018, 53,990 new cases of thyroid cancer were diagnosed. So, I am going to make a list of 53,990 things I’m thankful for, in honor of each case.

Just kidding.

My tumor was 3.5 cm. So, I’m going to make a list of 3.5 things I’m thankful for.

Just kidding.

In the week post-surgery, I took approximately 72 pills. So, I’m going to make a list of 72 things I’m thankful for.

Just kidding.

How about 10?

10 seems like a reasonable number.

But first, this was hard for me to write. Thankfulness is a choice and its one I am consciously fighting for in this season.

Yesterday I visited Last City Church in St. Paul to hear Austin Channing Brown speak, author of I’m Still Here, black dignity in a world made for whiteness. Read it. The pastor opened the prayer time by saying she wasn’t going to force a Thanksgiving prayer, even as it is Thanksgiving week. She said (I loosely quote), “Some people are angry and grieving. Some of you have lost something. Or have had something taken from you. Some of you are lonely and confused.”

I started to cry. As I sat, all by myself because my family is not here, less than two weeks post-thyroidectomy, with cancer still in my body and radioactive iodine treatment in my future, grieving what I’ve lost and what was taken from me. And I felt free to feel it all. All the sadness and anger and frustration and confusion and loneliness. And then, rising right up alongside it, surprising to me, was gratitude.

So I guess I’m saying the two things aren’t mutually exclusive. I wonder if they actually belong together. I can’t be truly thankful if I don’t let myself feel the sadness. And the sadness is empty if I don’t see all I have to be thankful for. I want to think about that some more. But, this post is long enough already, so here’s my list, written through tears.

Here are 10 Cancer Things I’m Thankful For

Timing. 15 years ago, I made a plan to be in Minnesota this fall, for the first semester of college of our twins. Never would have told you, fifteen years ago, that I’d get cancer at the same time.

Location. Minnesota, especially in a house by the lake or a farm in the countryside, is an idyllic a place for recovery. The United States, where clinics are clean and wild animal-free, hospitals have equipment and electricity and trained medical professionals, and where pharmacies are stocked with legitimate medications that are not expired.

Insurance. I mostly complain about insurance. Because, let’s face it, it sucks. There is nothing easy, simple, or clear-cut about health insurance. But. I have not paid full price for all these procedures, not even close. So that helps soothe the pain of paying for that insurance, which we have barely used in 15 years. My husband and I are employed and we have access to insurance. I don’t take any of that for granted.

Dr. D. and Dr. D My doctors are easy to relate with and don’t laugh at my questions about hair falling out or gaining weight or hot flashes. They did laugh at some of my jokes. Family practitioner noticed the lump and said, “Check that out. Quickly.” Surgeon didn’t balk at photographing the thyroid after he removed it. They take my disease and pain and family situation seriously. I’ve seen many other doctors and nurses throughout this and they have all been compassionate, professional, and personable. I even got a hand-written get well card from the OR nurses.

My Community. Starting with my husband, who has had to endure this mostly away from me, he is a rock star. My kids, who can’t be bothered with worry and are happy to be properly awed by the thyroid photo, are also rock stars. My parents, who have born the brunt of caring for me.  My in-laws who have been steady and loving and so helpful with everything from providing pumpkins for carving to nursing advice. My siblings who make me laugh until I cry. Friends who drive across states and cities and bring flowers, candy, socks, books, hugs, food, listening ears and their own stories. Phone calls and emails.

My Scar. I like scars. Of course that is easier to say now that I’m borderline old. But, I find them fascinating. Each one is unique and carries a particular story of trauma, and of healing. I don’t like trauma, not saying that, but none of us gets out of this scar-free, and I value the story-telling power of the marks on our bodies. This scar on my neck tells me all these things I’m thankful for: the body, medical care, community, health. The scar across my belly tells me Henry and I survived a dangerous birth. If you have a scar, I might ask about it. Because a scar isn’t just the story of the wounding, but the story of the healing. Of the mother tenderly, agonizingly, rubbing burn cream into her infant daughter’s neck, night after night for a year, singing to her baby, thankful for life. The story of the teenager, bravely dressing the salty, gushing wound of his cousin, ensuring he doesn’t lose a toe over the long, bumpy ride to the ER from the remote beach. The story of my mom being an adventurous, climbing kid (imagine!). Jesus has scars, too. Even in his resurrected body. Think about that.

My Body. So many parts! So much is going on this body! I had no idea. Of course we think about limbs, hearts, lungs, skin, brain. But there are all these wacky small body parts that don’t get much attention and yet, ooh boy, they matter. And I’m thankful for all of them, more aware of them, less likely to take them for granted.

The Body. The body of believers. Sometimes I can sink into borderline cynicism about American Christianity. But then I experience The Body and I’m humbly reminded that we are an imperfect family, like every family. I’m awed by the generosity of time and money, affection and kindness, from strangers and acquaintances and dear friends. I mean blown away to the point of tears, consistently. The Body here has loved me well, while I am away from my family and my team in Djibouti.

My Weakness. This is another tough one. I don’t like it. But I guess I can still be thankful for it. I don’t like that my quads trembled when I walked up and down stairs or that a fifteen-minute walk made me take a nap. I don’t like that when I spoke to a group of women 6 days after surgery, my voice shook and by the time I sat down, my entire body was shaking. From standing up. But. In my weakness, God is strong. And now I understand a little bit better what that means. In my weakness, people were strong for me. They wrapped a coat around my shoulders. They laid a hand on my back to steady my breathing. They offered encouraging words. In my weakness, the Body, each of them an image bearer and a temple in themselves, was revealed as strong. And, weakness teaches humility and patience. Sigh. Hard lessons to learn and lessons that are never fully learned.

Jesus. Especially the scarred Jesus of resurrection hope. Jesus who touches lepers and bleeding women, who cares about hunger and loneliness, who knows hunger and loneliness. Jesus who tenderly protects a vulnerable woman and who violently overturns money changers’ tables. Jesus who is not afraid of our sorrow, or anger, or fear, or regret, or confusion, or weakness.

What are you thankful for this year?

By |November 19th, 2018|Categories: cancer|Tags: , , |9 Comments
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