Dinosaur Cancer

Yesterday was such a hard day that I was determined to stay in bed long as I could last night so that at least Nathan could get more sleep. But once my fevers are hot and my bones are screaming, I have to get up. Last night was better than the night before, so that I was able to sleep in about two or two-and-a-half hour shifts instead of waking every hour. This felt miraculous, even if it is still not making it all night long.

The worst moment, though, came when I thought I had made it all night. I saw the early twilight sun through the curtains, and my fever was hot and my bones screaming, and I could have cried for joy to realize I had made it all night. I didn’t want to wake Nathan, so I tried to get up myself, but my feet got tangled in the sheet, and my arms were not strong enough, and I was caught halfway between up and down, and just stuck. I screamed out in pain, and Nathan jumped up and came running, and I moaned and moaned like a whale as he tried to free me, and as he did I also saw the clock that said it was only one am and the early morning light was only a street light on the corner. I felt so defeated! I collapsed in tears, sobbing and sobbing, with Nathan stroking my hair and trying to console me, until more hair fell out and got caught in my mouth, and that just made me cry harder. It was all very traumatic. It was a moment of horror, and very near despair, well, as near as I have thus far come.

It seems silly now, but was very big in the moment.

I did not realize this battle would be an emotional one. I knew it would be a physical battle, a mental battle, and even financial crises. I knew I would call on spiritual strength and rely on the support of others. I did not realize how much of the battle would be confronting, processing, and honoring my own emotional responses as they came.

The rest of the night was much better. I did sleep longer, and finally woke just before six. I made sure the covers were off my feet before trying to get up, and I got myself to the bathroom, hands washed, and teeth brushed without waking Nathan. I put my leg behind me in my reading chair, and lowered myself into it, triumphed to have made myself more comfortable while letting Nathan sleep a little longer.

Moving so much as doing my shower and getting dressed again is slow, hard work these days, and exhausting, but I got through it with only some tears and no more meltdowns. Rachel took care of me in the morning, and I loved finally having someone to talk with about adoption experiences. Jenn Perkins came to visit, and that got me feisty enough to stay awake the rest of the afternoon. These girls nourished my heart today, and it was exactly the “medicine” I needed after such a hard day yesterday and heart wrenching moment last night.

The rest of the day was amazing. I took two naps, but was awake and alert the rest of the day. I had only two fevers, and we were able to catch them early and intercede quickly. I held down all my food: a piece of toast for breakfast, fruit and a little soup for lunch, and a bite of meat and a carrot and bite of potato for supper. My breathing machine scores were all better, and my pain much less.

I walked the length of the house three different times today! In the end, I went one too many times, but it was because I really wanted to put my kids to bed. I gave them their medicine, read scriptures, sang bedtime songs, and Nathan tucked in the toddler and walked Five back to his room for bed. But oh! What comfort and happiness it brought me to get to participate, even if I could not do everything! By the end, though, a fever was starting and my skin was clammy and Nathan had to take me back to my chair. But I got to do so much, almost, for just a minute!

They say the third day after chemo is always the worst. That would have been yesterday. I am hoping today was amazing because it was the first in a series of feel-better days until the next round of chemo. I am aware it might just be a random feel-good day in a sea of really hard and bad days.

Cancer is lame, that’s all we know. I visit teach Kristi Bray, who has a fancy pants degree in biology, and who happened to bring us dinner tonight. We talked about cancer and genes and how it works and mutates and how weird ropes of cancer rocks are, and why pathology results take so long (something about stains that are a lot of manual labor). We talked about how I wouldn’t have miscarriages anymore, but decided maybe what they took out of me was just another miscarriage… Except it was some kind of fossilized dinosaur instead. Because it all seems that horrific.

I laughed today. I laughed today a lot. Nathan made me laugh, and my girlfriends made me laugh, and my kids made me laugh. I laughed until my belly hurt. But it was good, healing, and as it should be.

It was a good day.

Oh! And some of my chemo hats came in the mail today!

First are the beanie caps. Pros are that they are soft and snug for chills and for holding on my implant processors even when I am laying down. Cons are that they are too tight for a long time or when I am feverish. I don’t know if they would break in a little or not.

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Next are the abbey caps. They are a little more comfortable because they are a little more loose, but also a little more bling or fancy. It’s hard to make a bald head fancy. It’s also hard to make a bald head dance, which is what auto correct typed before I fixed it. Pros are they are soft and good girly a girl up, but cons are feeling hot in summer or with fevers.

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Some also have patterns, or made of silkier material (which some say is slippier on a bald head):

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And there is also a sun bonnet version, which felt very mormon pioneer:

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So far my hair is coming out in tiny tufts, rather than big patches, so maybe it will be the thinning kind where I keep some of my other hairs (like eyelashes).

I am picking out a wig, though sometimes I might not wear anything. I think it depends on the setting, my presentation of self, and my comfort that day. Regardless, it was fun playing hats. In fact, playing hats, along with my visits earlier today, was probably the most awake and alert I have been for weeks.

It was marvelous.

Especially tickling my kids.

I asked Nathan, while I had my wits about me, to take care of these fevers because my brain is the only asset I have to offer. I understand fevers are good (if below 103 and don’t mean infection), and that fevers can mean my body is fighting, and that we have to cook out the cancer… but please, make sure I don’t get cooked, too.

Because if I get cooked, then I definitely won’t be able to grow any more dinosaurs, and certainly won’t look good in any hats.

Posted in Healing, Health Tagged permalink

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.

Comments

Dinosaur Cancer — 4 Comments

  1. Hello Emily, I know you don’t know me and I don’t know you but I stumbled upon and have loved reading it ever since. You are an amazing woman. I admire you so much. I just wanted to say that I have been praying for you through all of this hard cancer stuff. I went to the temple last week and put your name on the prayer roll. So your name is in the Boise Idaho Temple. I will continue to pray for you and cheer you on. Jamie B.

    • Thank you for your prayers! There is true power to be found in the temple! Love it!