The Absurdities of Cancer

“The time has come,” the Walrus said,
“To talk of many things:
Of shoes–and ships–and sealing-wax–
Of cabbages–and kings–
And why the sea is boiling hot–
And whether pigs have wings.”

-excerpt from “The Walrus and the Carpenter”
by Lewis Carroll, Through the Looking Glass

I have always loved Through the Looking Glass. I remember being very young and having an antique-looking copy of the book that I would carry around, feeling intellectual and important. The elements of absurdity, while over my head in more nuanced ways, resonated strongly with me – a bookish, introverted young kid. The concept of nonsense being so throughly a way of life, and not something to be ordered, or pushed against, and the images of Alice being very, very big, then very, very small again, spoke to childhood me, as a paradigm existing so strongly in my own life.

As I have gotten older, the appeasing ways of that sort of nonsensical order have drifted away from me. As adults, we often find ourselves living lives with the illusion of control, while the universe grins like the Cheshire Cat, waxing and waning in ways we do not recognize until those things meet us full-force. I realize that, apart from that delightful little English Lit lesson, that I haven’t updated this blog in a month. This hasn’t been intentional, but a consequence of the absurdities of life with cancer. There is a lot of “wait and see” in this life, and a lot of possible disaster scenarios that we – myself, my husband, and my oncology team – have to explore without knowing which one, if any, might come to fruition. It’s not dissimilar to the Cheshire Cat – we watch, we wait to see if something will appear, and, quite frankly, we feel like we’re going mad most of the time.

The last news we had gotten was, finally, good news. My June brain MRI showed no progression – finally, something was stable, and we were all feeling like the tides may have shifted in my favor. I had finished five weeks of Xeloda, the oral chemotherapy, and was tolerating it much better than I expected. Then, in mid-June, I went in for my monthly follow-up visit. My bloodwork was looking a little off, something was iffy, but we didn’t know what – or if it was anything at all. We had to wait and see. I felt myself tumbling down again, from the mammoth Alice to someone very small, looking up at the giants all around me. My oncologist decided to increase my Xeloda dose for the next two cycles. And suddenly, I was no longer tolerating it well. I had some very significant gastrointestinal symptoms (let’s leave it at that) and spent an entire week where I was unable to get out of bed before noon. Once I was up, I was achy, still tired, and in pain – pain like I had not experienced in quite a while.

Last Wednesday, I was back for my follow-up once again. I had had almost two full weeks total on the higher Xeloda dose, and I just felt awful. I felt sick – not in a transient, I-have-a-cold sort of way, but in the sense that something was deeply wrong. My bloodwork looked worse. My oncologist ordered a PET scan for that Friday – less than 48 hours later. She called me on Monday with the results: significant progression. My most metabolically active liver tumor had doubled in size (thus explaining the liver pain – imagine feeling the ashiness and lethargy of being 40 weeks pregnant, coupled with the ashiness and diffuse pain of being in a fender-bender) and there were additional smaller tumors. My lung spot was still inconclusive, there were a few lymph nodes that were acting up (and also very painful), and I had developed some unusual skin puckering on the right breast, near my original tumor site that is also still inconclusive. (I had an ultrasound and mammogram of the spot several weeks ago, and the conclusion was that no one knows what it is, but it’s sort of inflamed and could be treatment-related, but it’s not the large, aggressive, liver tumor, so it’s less of a concern. All sorts of absurdities.)

This progression took me off the Xeloda immediately. After two months, the drug had stopped working. It’s unclear if it had ever worked. This one was supposed to work – but, then again, so was the one before, and the one before that. I don’t know if I’ve ever felt such a space of emptiness before. I sympathized with Alice, falling down the rabbit-hole, not knowing what was to come. I took as much Ativan as I could. It didn’t really help. For whatever reason, my cancer has gotten much more aggressive, and does not respond to the targeted or hormone therapies that we had tried. It had not responded to the oral chemotherapy that we had tried.

So, on Wednesday – yesterday –  I started infusion chemo, a drug called Paclitaxel, better known as Taxol. Yes, I’ll lose my hair. It’s already started to come out, actually. Not a lot, but it’s noticeable. Each time I put my hand up to my head, I lose a few wisps into my fingertips. The reasonable solution here would be to stop touching my hair, I suppose, but also maybe to not get cancer and then have to take drugs that make your hair fall out. I had had a lot of bravado up to this point about losing my hair, but really, it’s more than just hair. I’ve never been a particularly frivolous person, but it’s the lack of control, the lack of autonomy, that has hit me hard. I never really saw how much my hair is a part of my identity until now, when I’m faced with being stripped of it. I tried to talk to Felix about it, and tried to downplay my sadness by making it into a fun new thing – mommy is going to cut her hair off! She is going to have a bald head for a while! He didn’t buy it, and burst into tears. So of course, I also burst into tears, and we ended up both sobbing on the couch about it for a while.

My first infusion was yesterday, and frankly, it was hard. I was really nervous. Things, up to that point, had moved so quickly, so urgently, that I was still wrapping my head around everything. This felt like the point of no return. I also got a crash-course of the luxuries I had been missing by avoiding chemotherapy up to this point (I say that very sarcastically). Prior to the chemo infusion, I received a series of pre-chemo meds: benadryl, dexamethasone (a steroid), and Zofran, or Zantac, or something that helped with stomach issues – I honestly can’t remember what it was because everything was kind of a blur at that point, and I had been crying really hard for most of the day. I had been warned that the benadryl might make me a little bit loopy, but I was not prepared for the reaction I had. The IV benadryl, coupled with the steroid, made me feel like I was crawling out of my skin. I was completely loopy, but also really crabby and uncomfortable. I couldn’t keep my eyes open, but also couldn’t relax because my skin felt like it was crawling. Compared to that, the actual chemo infusion felt like a breeze. Halfway through, I thought I was going to lose my mind, so I started walking around the infusion center, doing laps. The nurses thought I was crazy, and I felt like I was losing my mind, but it made the time go by faster.

Once we finished up and got home, I crawled into bed as soon as humanly possible. I had never felt fatigue like this before – I didn’t feel like I could get up even if I wanted to. And then, I woke up this morning at 4 am, completely awake, came downstairs to plant myself on the couch, and I’ve been in the same spot ever since. I am trying to avoid the feelings of futility, of inevitability – much like the Walrus and the Carpenter weeping over the sand on the beach and wishing it away, it all feels very absurd.

21 thoughts on “The Absurdities of Cancer

  1. Wishing I was closer to be able to give you a hug!!!!! I’m so sorry that you are dealing with so much and have been dealing with so much this year. Love, gentle hugs and light to you today. 😘❤️

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    1. I hated having iv antihistamine (benedryl etc) whilst having Pax (Paclitaxol). Due to the steroids / chemo making my skin feel burnt and having a mild reaction to the chemo for my first two rounds, I ended up having an oral antihistamine tablet once a day, and steroid tablets the morning before and of chemo. This meant I didn’t have either steroids or antihistamine as an IV the day of chemo – just the paclitaxol – oh, how much better I found it like this! In the end I had 11 (out of 12) weekly infusions – last one cancelled due to getting peripheral neuropathy, so just watch out for that lift “bonus”. Good luck. X

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  2. Boy, Emily.that’s tough. My husband and I both have cancer..he has lung, with mets to the brain and I’m, stage II-B invasive lobular with 3 involved nodes. It’s been bad, but when I think of going through it as a younger woman with little ones to worry about..well that’s just too much to make a person go through..I’m so sorry you have to do this.
    This is a hard question, but have you considered palliative care while you go through all of it? They will manage your symptoms much more precisely and you will have support to enhance your quality of life. It isn’t a sign of giving up, it’s extra help. You can still try whatever treatments you want to try.
    Anyway, you sound bushed and I hope you find lots of strength to do the things you must.xo!

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  3. Dear Emily, This is Kathy Mellen’s sister, Donna. We’ve met only a couple of times, but I want you to know that you have my heart. I read all your posts with deep respect and appreciation for your ability to convey your experience. I have no words other than to let you know that I send you my love.

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  4. We’ve never met in person, but I feel like I’ve known you ever since Christian’s first mention of you, and I’ve loved you ever since discovering what a remarkable person you are, what a remarkable couple you two are, what remarkable parents you are. Please know how often I think of you with so much love, and how much you are in my prayers.

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  5. Your writing is extraordinary. I wish I had the talent that you have with the written word…. all I have is “fuck cancer”

    Thanks for this blog. Thanks for sharing YOU with me.

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  6. Hi Emily, There is nothing to say except this sucks. I don’t understand why we cannot find some cures for this terrible disease. Thinking of you.

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  7. Hi Emily,

    I’m sorry your treatment stopped working and that you had to make another change. I hate news of progression. I hope the Taxol isn’t too terribly harsh and does its job. And it’s fine to be upset about losing your hair, btw. I always hated it when people said things like, it’s just hair.

    Thank you for writing so eloquently about this stuff. Absurdities of cancer, no kidding. That’s putting it mildly.

    In your corner. Always.

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  8. Hello Emily,
    I have been following your blog since “A Healthy Slice of Life” shared your story. I just wanted you to know that you are frequently in my thoughts. I am sending love to you and your entire family.

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    1. Hi Emily:

      I too have been following your blog since I saw this on Brittany’s blog.

      There are simply no words to express all I am feeling for you and your family so I won’t try. Please know I am sending you love, light and strength to you and your entire family.

      Your courage is beyond admirable. I pray you are surrounding yourself with many friends and family to lift you up in all of the ways they can.

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  9. I’ve been thinking about you, I never know what to say. Just, thank you for sharing this. It’s clear you’re loved by so many people and helping so many more.

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  10. Hugs! Genius writing! Prayers to you that this new “adventure” will work for you. Losing my hair was the worst part of my cancer journey for me! It will definitely give you a whole new perspective on life.

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  11. there are so many things I want to share with you about infusion chemo. first, the steroids will mess with your sleep. second, don’t get behind on anything prescribed for nausea. third, let people bring you meals, even if it feels awkward. lastly, the hair……you are blonde like me…my hair has always been my best asset, i always thought. Having lost it twice now, I realize i was wrong about that. i could not do wigs the second time, but there are wonderfully fun hats to be had. Hugs to you

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