Ovarian Rhapsody
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Ovarian Rhapsody: Side Effects, Unfiltered

tuenight censored margit detweiler ovarian rhapsody

Rock the Taxol. (Photo credit: Margit Detweiler/TueNight)

I’m lying flat on the bed with just yoga pants on. My legs are propped up on a stack of pillows. I can’t muster enough energy to finish getting dressed this morning, so here I am, half nude. My mind wanders to that hilarious Bill Murray SNL skit about an out-of-shape Hercules and his bad back. “If I lie flat like this it will fix itself!”

If only.

My entire left side feels swollen and pricked with pins and needles — it’s probably neuropathy, a chemo side effect. Yet…  I can’t be sure if this is actual neuropathy or the fact that I have a recently developed a blood clot in my leg. Or that I now have a new toe infection because of the clot, because of the chemo, or because of surgery. Who knows.

The icing on the cake? I have a cold so I’m coughing and hacking and sneezing out chunks of blood. The blood thinners I’m on, to combat the clot, make bleeding from any orifice a likely predicament.

Today is one of the bad days. I had the “double whammy” this week: Carboplatin and Taxol, both types of chemo drugs at once, and I’m feeling it all over my body. There is a constant pain that sears through my lungs and chest like the worst acid reflux you can imagine, a sense of being burned from the inside out.

“All to be expected,” my doctor and nurses have reassured me, time and again, in person, via emails and on the phone as I desperately convey my dire complaints. “Known side effects. All to be expected.”

I am writing this smack in the middle of my chemo treatments, without the benefit of hindsight or future filters. This is what my particular cancer experience looks and feels like right now.

Prior to cancer, I never really wanted to read about treatments or the effects of chemotherapy. Even now, maybe I don’t. But when I was first diagnosed, all I wanted was someone to show me the day-to-day gory details, the plain facts on how it would disassemble my life. I conjured my ideas from snuggly cinematic tearjerkers or those omnipresent Cancer Centers of America commercials.

In the beginning I was cocky. I was so cocky. The third week into my chemotherapy treatments, I was like, “I got this.”

Turns out, the chemotherapy process itself isn’t horrible. It’s just a long day with a needle stuck in my arm. The worst part for me is the needle. I am a “tough stick,” and sometimes it takes the nurse — or several nurses — four or five tries to find my vein (as I whimper like a baby). They’ve wanted me to get a port in my chest for easier access. I’ve refused — there’s only so much I can take. Now, I just know to ask for the right nurse, Estrella, who can often be found on her hands and knees with some sort of rubber vein-producing tool magically coaxing my veins.

Once the blood work approves you for chemo, once the needle is in and delivering the goods, chemo can be, dare I say it, fun? I tote along a friend or family member, and we catch up, we gossip, we watch bad daytime TV. NYU has a lovely art cart that wheels around (my friend Shelly made an amazing stencil print.) I get a little zonked out on the “pre-medication” they give me before the chemo drugs go in — the Benadryl or Ativan in particular — and sometimes pass out in a druggy bliss.

It’s the few days and week(s) after chemo, when the side effects hit, that can bring me to my knees.

**
This particular morning, I can’t move.

On a pillow next to my head is my cell phone that keeps pinging. A friend is nearby. She made me a hat during a cruise she went on, and she would love to come by right now and drop it off. The phone just pings and pings and I can’t respond. I cannot.

My head spins with a sharp pain. I forget what today is. Chemo brain. I wait to find my balance — the neuropathy (or whatever) makes standing difficult — and I get to the kitchen to mix up my cocktail of drugs and supplements and prepare my shot. I have to give myself Lovenox shots in my belly twice a day for the aforementioned clot (discovered one night when my leg swelled up like a tree trunk and we rushed to the emergency room) so I steel myself for that — sometimes it hurts, sometimes it just stings. My stomach is a landscape of purple and blue bruises.

Way worse than the pain is the price; each shot costs $50 and, at twice a day for six months, it’s an astronomical cost for health. My generally good insurance won’t cover it, but my doctors prefer I take this to something cheaper, for now. Not working is not an option. The financial impact of cancer is staggering.

The side effects of the side effects, or side effects from trying to prevent side effects, will get your head spinning. Sometimes I wonder if I’m causing myself more pain and damage through treatment than the cancer ever would.

I haven’t pooped for days because of the anti-nausea medication I’m on — it makes my stomach bloat and cramp. So I pop some Colace, sit on the toilet and try to make a miracle. Thank goodness for the iPhone, for Facebook, for things I can do on the toilet and while lying down.

Despite the medication, the thought of eating anything makes me gag. An hour or so later, I nibble on a pot cookie that a friend gave me hoping that it will alleviate the nausea better than the prescribed Zofran so maybe I can eat something. Not eating means very bad things — like not getting the nutrition you desperately need to keep your blood counts in check.

A few weeks ago my doctor cancelled my chemo because my blood counts were too low. It was the second time that happened. The first time was because my white blood cells — the cells that prevent infection — were “very, very low.” This time it was my red blood cells and hemoglobin — the stuff that provides oxygen and energy — that were “very, very low.”

This fatigue is perhaps the worst side effect. Before it happened, it sounded somewhat lovely: I’ll just nap a lot; I love naps!

The nurse offered me an option: “We either cancel your chemo or you can get a blood transfusion.” I was like, “See ya.” But, a few days later I ended up getting the blood transfusion anyway.

“Wow, your hemoglobin is now at a six. I’m amazed you’re sitting here talking to me,” said the nurse as she hung a bag of A+ from San Antonio, Texas. (Thank you, blood donor in San Antonio.)

I know, it could be so much worse. I still haven’t thrown up. Yet. Knock on wood.

This fatigue is perhaps the worst side effect. Before it happened, it sounded somewhat lovely: I’ll just nap a lot; I love naps! But when you can’t do basic tasks, walk more than a block, your breathing is compromised and you slug across the floor to just get yourself a glass of water, well, fuck. You are not yourself. Basic human movements are like hauling ass up Everest.

I’m able to work at about a third of my capacity. They tell you to keep some semblance of your old life. You want to stay busy, stay you. But there are days when I’m crumpled in a heap, and I have to call it in. Can you write this week’s Editor’s Note?

The late Vanity Fair reporter Christopher Hitchens, who wrote about his cancer as it was happening, put it this way: “I would not cancel these appearances or let down my friends or miss the chance of selling a stack of books. I managed to pull off both gigs without anyone noticing anything amiss, though I did vomit two times, with an extraordinary combination of accuracy, neatness, violence, and profusion, just before each show. This is what citizens of the sick country do while they are still hopelessly clinging to their old domicile.”

We cling.

Some days, I might seem almost completely fine. Well, I think I seem that way, but kindly visitors will stop me mid-sentence and say, “You’re very tired aren’t you?” My mail carrier tells me flat out, “Hey, you look sick.” It’s tough to hide under floppy hats and bulky coats. I fear spring.

**
In the beginning I was cocky. I was so cocky. The third week into my chemotherapy treatments, I was like, “I got this.” My side effects weren’t too bad. No nausea, no neuropathy (painful tingling in your hands and feet that can be permanent), appetite was still in check, I had energy, I had just shaved my head and felt kinda punk rock about it.

My oncologist boosted my confidence, regularly telling me, “You’re so young and healthy, you should tolerate this process pretty well.” (Bonus: When you have cancer at 48, you’re a spring chicken!) I even told my husband, “What if I am so strong and so healthy that the chemotherapy doesn’t work on me?” He laughed, “Slow down there bucko.”

And then.

The effects of chemo are “cumulative.” A word I can’t stand, and every time my oncologist says it I want to cover my ears. “The effects of your chemotherapy will be cumulative.” Meaning it gets worse and worse. One of the stranger parts of cancer treatment is knowing that you are willingly poisoning your body to get better. You will be sick and sicker. You can schedule it on a calendar.

There are days when the inability to be myself, to function, to deal with the pain, leads me to long crying jags. There are moments, many moments, when I think I can’t fucking do this. I’m done. Or, WHAT am I doing here? It’s all happened so fast, only in the last four months, that I’ve barely had time to blink and suddenly I am on scores of drugs, I have a blood clot, an infected toe and no hair.

I’m still confused when I catch myself in the mirror.

But I get through another week. I meditate. I pray. I watch an episode of Broad City. I blast Iggy Pop. Or I scream, “Fuck. You. All.” to no one in particular.

Because sometimes you just need to embrace the suckage and scream.

It’s all to be expected.

Read more of Margit’s column, Ovarian Rhapsody:

31 Comments

  1. Cherisse Gardner
    Cherisse says

    Gripping… you’re an amazing writer and person. If it’s hard to feel it now that’s OK, we’ll just say it for you… you got this!

  2. Shelly "Splinters" Rabuse
    poes says

    I’m glad you are documenting this because I don’t always know how you are feeling and I don’t want to bug you by always asking how are you feeling. I’m sure you are sick of that. Just know you are a very, very strong person and you will get through this. It’s gonna suck but you will get through it. I’m always happy to come and do an art project with you!

  3. Margaret Battistelli Gardner says

    Jesus, Margit, I am sitting in a coffee shop crying my eyes out. For you. Yes, of course. I remember you as a strong, vivacious, amazing woman. And what I have read of your journey so far re-affirms that for me. The fact that you have the dual courage — to face this awful challenge AND to write about it — affirms it yet again for me. But I’m also crying for me. I don’t have cancer and my challenge is NOTHING compared to what you’re dealing with. But I do have fibromyalgia, a condition that leaves me fatigued beyond anything I have ever felt, weak, in pain, depressed, foggy, and frail. Not all the time. But when it hits, it hits. Hard. It’s nearly impossible to work, but I have to work. It’s nearly impossible not to cry, but crying seems to be all I want to do some days. And some days, like today, no matter how bad I feel, I have deadlines and have to get out of the house because to stay home would mean crawling back to bed every half hour and getting nothing done. My doctors believe it was triggered by a surgery trauma a few years ago. The discomfort is constant but the flares that set my body on fire for hours or days or weeks at a time can be triggered by stress, poor diet choices, skipping exercise for too long, a strong odor or loud noise, driving too long, the fucking sun shining too bright or the shower being too hot. Or too cold. Or too fucking wet. There is some rhyme and reason, but not a lot. Whatever caused it, whatever triggers it … it has changed my life, and I don’t even know who I am anymore sometimes. And like I said, I KNOW it’s not the same. I KNOW I am not fighting for my life. But I do know how illness can change you, change your life, and hurt in so many ways other than just physically. My heart goes out to you. Thank you for sharing your journey. And for letting me cry (oh so publicly) about mine. You always rocked. Still do. Always will.

    • Margit Detweiler

      Thank you for sharing that Margaret – and there are a lot of similarities. I mean just because I have (had!) cancer doesn’t mean it trumps everything. It really doesn’t. I’m glad there was something you could relate to. Sending you positive vibes on your health!

  4. Elizabeth Hilts says

    Thank you. Just fucking thank you and I hate this for you and thank you for being so fucking honest.

  5. Julie Parr
    Julie Parr says

    No real words. Sending my love and support. I wish I could send you every ounce of extra energy I have.

  6. Bonnie Young says

    So very sorry you’re going through this sweetheart! Let’s just hope that it’s over soon and you can go back to being the Margit you always were but even better because of this experience. You’re beyond brave and I thank you for chronicling your journey. You have no idea how far reaching your story can be for other ovarian cancer patients. Please know my thoughts and love are with you and that Lauren’s chicken soup continues to comfort you .

  7. Amanda Clayman
    Amanda Clayman says

    This piece just sings with the rise and fall of long-term coping. You are an amazing writer to convey it so. Each time you paint a picture of what is hard, what hurts, what feels impossible to bear, you deliver your point and then it’s like you take a breath and say, “and yet.” Then you move into the next point and do it again. I am so sorry that you are having to endure this. But I am awestruck by your capacity to be self-aware, expressive, and fucking fierce in your telling your truth. Here’s to another day, to getting pants on, to finding the next thing that makes you laugh, makes you poop, or makes you feel like you’re still you. Clearly your voice is as powerful as ever. You contain multitudes. xoxo

  8. Jennifer Scott says

    Oh honey. You are a rock star! Hang in there. You are going to kick France’s fucking ass. Xo

  9. Amy Paturel

    It never ceases to amaze me how you can write so beautifully—and so honestly—in the midst of a health crisis. Shit, you even managed to circle back from beginning to end. But from you, it’s to be expected. 🙂

    Margit, you inspire and amaze! Thank you for sharing your story; for being real; for being you; for fighting even when you want to curl up into a ball. You’re a shining example of dignity for us all.

  10. Renee Dale

    Margit,
    This is so beautiful, powerful, gripping. Reading this is a gift. I’m so sorry you’re going through it, but so grateful you’ve written this and shared. Everyone is sending strength & love. So good to hear your voice.
    xo, Renee

  11. Heidi says

    Wow this brings back memories!!! I found your post via the Design Mom blog and her weekly share “A Few Things”. Her link simply said -“So good. A post written in the middle of chemo treatments”. Being a cancer survivor, having gone through 4 rounds of chemo I was curious to read about someone else’s experience. I was, in a word, surprised when I clicked on the link and read “Ovarian Rhapsody”. I’m an Ovarian Cancer survivor!!!! In 2010, at the age of 39, I was diagnosed with Stage 3 Ovarian Cancer. It was an unusual type for someone my age, Dysgerminoma (it tends to occur in younger women). Of course I read through all of your posts and I can relate to so much of what you’re feeling and you’ve written about the experience in such an impactful way!!! I’m amazed you’re enduring chemo without a port. However I will say, for me, going through the process of getting a port was worse than going through the hysterectomy. Particularly when a nurse doing my intake asked me when the first day of my last period was? Are you kidding me?!?!? Are you looking at my chart????? Yeah, I had a complete hysterectomy 2 wks ago because I have Ovarian Cancer!!!!!!! Just one of the many jaw dropping stories I collected as a cancer patient However having that port made my treatments easier. I developed a pulmonary embolism after 3 rounds of chemo, spent 9 days in the hopspital, had my 4th round of chemo delayed because of it, had the frustration of 2x/ day Lovanox shots for 6 months and the bruised belly to show for it…sigh. I only share this with you, because the good news is that it’s 2016 & I just marked 5yrs of NED (no evidence of disease). I was so overwhelmed with emotions & flashbacks, reading all of your posts. You seem like a fighter and your attitude strikes me as realistic, yet positive!!!! All good things to have in your arsenal to fight your way through cancer and come out a survivor!!! I am sending positive thoughts and prayers your way!!!!

  12. Margit Detweiler

    First of all CONGRATULATIONS ON NED! That is amazing Heidi — and I’m so glad you found your way to my posts. I love hearing survivor stories. You sound like a fighter yourself 🙂 They moved me from weekly treatments to every three weeks (same amount of drugs, just all at once, more recovery time) – so it’s more intense but more recovery too. One of the main learnings from all this is how much you have to advocate for your own healthcare and treatment and almost direct the doctors and nurses in a way. I had one instance where the nurse committed two of my necessary drugs and I had to tell her twice that she missed them, it was remedied, but it’s hard to stay on your game when you feel like crap. But imperative. The nurses are also amazing, dealing with so many patients, but as you know, the patient in some ways, knows best. Thank you for reading — and your parterres 🙂 Right on back to you! XO

    • Heidi says

      That recovery time in between sessions should be helpful That was my chemo schedule, I would go 3 days in a row every 21 days. They were long days 7-8hrs, but it helped to have recovery time in between. Of course just when you start feeling better it’s time for another round-go figure!!! You are so right about having to advocate for your own health and it is a challenge when you just don’t want to think about anything. Fortunately you’re surrounded by friends & family who are there for you. It was always such a feeling of sadness seeing patients who had no one to be there with them during treatments. I hate to say it, but battling cancer made me so thankful for everyone and everything in my life. I suppose I’ve tried to find the silver lining in the entire ordeal. I wish you only the best and I will continue to follow your journey. You’re a wonderful storyteller, even though I’m sure this is never a story you had planned to tell. Take care!!!

  13. Matt D. says

    Margit,

    You’ve always been a real wild child with a lust for life, whether you were the passenger or a little know it all, but even when you’re living on the edge of the night and you feel f’ing alone, just use your TV eye and think of some weird sin as you cry for love to sister midnight. You’ll be nightclubbin’ in Kill City with Candy in no time having some funtime with new values screaming “I need more!”

    Continue to search and destroy, gimme danger and wear your skull ring proudly. I may not wanna be your dog, but we’re all pulling for you.

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