Beyond frustrated …

Ugh… Ruff couple of weeks with a few bright spots.

#1. My dear friends Corey and Eckel came to visit from the UK. I was expecting Corey to visit but not Eckel so it was especially exciting to see him standing in my hallway when I opened the front door. We had a lot of fun hanging out and catching up.

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I wasn’t feeling my best during their visit but my energy was on an upswing so I managed to out with them a couple of times. We went to the BC Museum and out for food. It was nice being outside the house in the daylight like a normal person …

Out of the blue I got my period. WHAT? I haven’t had my period in months. The chemo puts you into menopause and my doctor told me to not expect to have my period during chemo. So when … Auntie Flo came a knocking and she knocked me off my feet and right back into bed.

Fuck. Sick. Tired. Crampy. So crampy. Almost threw up from the pain. Come on universe. Give me a break!!! Then the fatigue set in. I could barely get out of bed. Sleeping, napping, nothing helped. I was beyond tired. More tired then I’ve ever been in my life …

Then a menstrual headache moved in and for 3-4 days (I lost count) I lost all track of time. I could barely move. Then I noticed my eyesight was starting to go. Wtf? My eyes have been “going” for a while. I had to get readers and this year I graduated to wearing progressive specs most of the day but can you really lose your eyesight in a week?

Things that were in focus one week ago were now blurry. I could hardly see across the room without squinting and that was WITH my glasses on.

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Luckily I had an appointment for a check-up with my oncologist and we discussed my fatigue and eyesight. She said my eyesight thing sounded weird and that I should go see an eye doctor (she didn’t even look at my eyes). I also talked to her about how my lungs get really tight about 4-5 days after chemo and it makes breathing difficult. She suggested this all seemed normal for chemo.

She also seemed to think my overwhelming fatigue was normal (due to chemo). I almost started crying because it can’t be normal to be this exhausted. I kept asking her if she could check my iron levels. She didn’t seem worried about it so I asked if I could take some iron during chemo and she “Sure. Won’t hurt…”

Well guess what? I went and got iron pills … and within 24 hours I felt like myself again. I mean … I don’t know if iron pills can work that quickly but I swear to dog I woke up feeling like a new person. I am pretty sure my body sucked all the energy it could out of that iron pill and put it to work.

I have an appointment with my GP on Tuesday. I’m going to ask her to do a blood panel and check my iron. I don’t understand why the oncologist won’t do it??

And my eyes? I came home so mad that my oncologist didn’t even look at my eyes that I went to Dr.Google and typed “Chemotherapy eyesight problems” and guess what I found? THOUSANDS of people who were having the same problem as me – who simply fixed their issue with some dry-eye drops because their eyes were dehydrated from the chemo. Within 20 minutes my eyes were back to normal.

How can my oncologist not know this is a common issue with chemo patients?

So the last couple of weeks have been kind of shitty. Feeling low emotionally. Feeling low about my body falling apart. Feeling low about my oncologist. Feeling low low low and then before I knew it … it was time for Chemo #3. Ugh.

I didn’t feel ready. I barely had time to recover from #2 and now it’s time for #3? I had a really bad day the day before chemo. Weepy. Low. Sad. I cried so much … told Gerry I didn’t think I could do it. I was a mess.

But then something weird happened. I don’t know if it was the iron or the extra Ativan I took to get to sleep that night but I woke up in the morning ready to kick some cancer ass. I put on my new dress (a birthday gift from my dear friend Isa) and my best drag-eyebrow and I walked into the cancer clinic ready for #3.

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Unfortunately despite all my bravado that day – this round has been tough and I fell apart pretty quickly. The cumulative effect of the chemo is starting to add up and all the “things” that happen to me because of the chemo are really starting to drag me down.

Thankfully we have the nausea mostly under-control with the new medication. I would say my nausea during the first four days is around a 4 out of 10. Which is much better than it was the first round which I would categorize as an 11.

Day 2 my face goes bright red. LIKE BRIGHT RED. So red that it makes freckles pop out and so red that it actually burns my face. Portions of my face are so burned that the skin is perpetually dry and flaky. It’s like a sunburn from the inside out.

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When I called the clinic to talk to a nurse about it she told me to drink more water and put cream on my face. If I drink more water I am going to float away … I tried putting an icepack on my face to bring down the heat and it helped a little.

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I also put so much cream on my face that Gerry laughs when I come out of the bathroom because I look like a 1950’s housewife with cold cream on her face … but guess what? 10 minutes later my skin has soaked it all up and I have to re-cream my face again because it’s so dry. UGH!

And then there’s the crazy dreams. The first chemo day I always have a nap and Gerry has to come check on me often because I’m moaning like I’m being murdered. It happens every time … it’s so weird.

The next couple of days are terrible nightmares. Dreams inside of dreams. It’s like the movie Inception only 10x more terrifying and I wake up quivering and terrified.

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This time around my breath got real shallow again around day 3/4. I try and go for a walk with Gerry and Fergus every night and Thursday I could hardly breath. I had to stop multiple times to catch my breath. It was like I had baby lungs.

Friday I lay around all day and I still could not catch my breath even with just resting. I talked to the nurse at the Cancer Clinic and she told me if I didn’t feel better to call the on-call oncologist.

Well around 10pm that night I still couldn’t catch my breath and now I had a low-grade fever, felt like I had the flu and my heart-rate was really low so Gerry made the call and talked to the doc about all my symptoms. He suggested I go to the ER and since I’m a chemo patient he would call ahead so I didn’t have to wait.

We arrived and they whisked me into a room. Thank goodness we arrived when we did because it was Friday night at the ER and things were hopping. From the drunk 87 year old man beside me who refused to pee into a cup. To the guy who had cut himself with a knife because he was lonely to the lady with dementia across from me. It was a gong-show and I kind of freaked out because I felt so vulnerable and unsafe. Ugh. Thank god for Gerry. He stood beside me like a guard shielding me from the chaos. My hero.

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I had blood drawn. A chest x-ray. Multiple physical exams. They checked my heart with a crazy machine that looked like they were giving my battery a boost and then the doc told me to go home …

He said my films/blood were fine and that it sounds like it’s all par for the course for chemo. Seriously? This can’t be normal? Can it?

So now I’m home. Exhausted. My breathing is a little better. My energy is getting a little better … but I still feel like this is all bullshit. I feel like they are trying to kill me … there has to be a better way.

I made the mistake of tweeting about being in the ER as it was happening and I kind of freaked some people out (like my Dad). I am in such a habit of tweeting what’s happening to me that I didn’t think it would upset people but that’s because I’ve never thought of what’s happening to me as life and death before. It’s just happening … Is that weird?

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I tweeted as soon as I knew everything was ok … but it made me stop and think about tweets and why I am compelled to share things that are happening to me in the moment.

For me? I did it because I was scared. I felt really unwell. Gerry was being wonderful and supportive but I could see how freaked out he was that something serious was wrong with me and by tweeting out to the web it made everything feel less heavy and it also gave me instant support … I mean you guys were messaging me like crazy as soon as I said I was in the ER and that helped me feel less scared. πŸ™‚

For some reason I can’t stop thinking about Corey Monteith (who died this week) and how his last tweet was about Sharknado. That’s a weird last tweet to leave the world before you die or maybe it’s exactly as it should be?

I haven’t even thought about dying … until that trip to the ER. Now it’s all I can think about. What if my heart stops when I’m sleeping? Or what if the chemo crushes my lungs and I stop breathing?

Or if I do die … This house is so messy. I will feel so guilty leaving so much junk behind for Gerry to clean up. Ugh. I’m trying to resist the urge to throw everything out because I know it’s just panic but the thought of Gerry having to sift through all this stuff makes me stressed.

Like that’s the thing I should be stressed about … ha ha. Silly girl.

I don’t know where my head is at … but it feels like a Sharknado is coming to get me and I won’t have the strength to fight it. Where’s Ian Ziering with a chainsaw when I need him?

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42 Responses to Beyond frustrated …

  1. PoetJoe H Gallagher says:

    Sarah- I had no idea you were going through this until I just saw your notice of this post pop up. I wish I had something encouraging to say, but the closest I can come to that is to understand your frustration in dealing with the exhibition of shortsightedness or lack of attentiveness that is so easily encountered in public facilities. It’s so much better to be able to camp out through difficulties with loved ones when fortunate enough to have such support in life. Knowing you have friends there & knowing that misery loves company & that that can be better to have than chipper people telling you of optimism… I feel that this little bit of a paragraph is the best I can offer since i’m not a doctor. Know that you’ll get through & learn as you go though. On a brighter note, i’ll post a comical happening of this past weekend on your facebook page… I think you’ll like it & get a vegan kick out of it to uplift a bit!~

    Take care…
    ~Joe

  2. RenΓ©e says:

    Keep tweeting/instagramming/facebooking if it makes you feel better in the moment. Hell, if you wanted to do nothing but chant “Woobly-Woobly” all the livelong day, that would be appropriate too, as long as it made you feel okay. People see it and pay attention and respond. That’s gotta be worth something. I’d even say it has healing properties.

    Your frustration level is totally appropriate for what you’re experiencing. Not being able to breathe or see well or sleep well and constant nausea and hot-face and thrush and more = clusterf*ck.

    You are going to get through this; you are going to feel better. The chemicals are making you feel shitty and anxious, I’m sure, but in the midst of the shittiness of it, know that you are surrounded by unrelenting and unconditional love and care, regardless of what’s happening in your mind or in your housework.

    Also, huge respect for Gerry. Huge. People like me on who are witnesses on the outside of it all are blessed simply by witnessing such a down-to-earth, loving couple consistently kicking ass and taking names together. Not to mention mad Fergus love. Fergus pics have actually made my days better more than once. But I digress.

    All this rambling is to say you’re all treasured and have a huge team around you, and that you’re going to get better and you’re going to feel better.

  3. Sarah says:

    That’s what this all comes down to… Loss. Loss of energy, loss of health, loss of life. It’s terrifying. If you master that lesson you are in an incredible place.

    Re: the dry skin. Have you tried aloe vera juice? It’s got so many benefits that could help you right now.

    • Sarah says:

      I have a giant aloe plant and I never even thought to use it … Thank you! πŸ™‚

      • Sarah says:

        Definitely aloe on your skin will be good, but try actually drinking the juice. You can get it in health food stores as you probably know. You won’t see a difference right off the bat, but over time I’ve noticed its positive effects on my skin. Not to mention it keeps your digestive track well balanced and can help with wacky hormones. It takes some getting used to taste-wise. It feels like you’re drinking mild perfume. =) Some people mix it with juice. I like to dilute about 4 ounces in water along with coconut water.

        • Sarah says:

          Thanks Sarah
          Yes. I’ve drank it before for tummy trouble and I actually kind of liked the way it tasted. I completely forgot about it for gut healing so thank you for the reminder. πŸ™‚

  4. MollyPamela says:

    Have you also tried using unrefined, organic coconut oil on your face? It might make it feel cooler and also should hydrate your skin to the moon. Thinking of you constantly xoxo

  5. michelle says:

    Sarah, i just want to send you lots of love.. i wish i had words of wisdom to share with you. just know that you have a whole crowd of people out here, supporting you!!!

  6. isachandra says:

    Love you, honeybun. Are you sick of hearing that you’re an inspiration? Because you are. So many hugs. And I’ve thought about that Sharknado tweet, too.

  7. John says:

    Thank you for sharing Sarah. It sounds like fucking hell. You are as strong as they come!!! Huggies <3

  8. christina says:

    sarah!
    i just thought of something. anemia creates shortness of breath. get that iron test!! im sure it has something to do w the chemo but you never know, maybe the anemia is exacerbating it! im always brought to tears with your descriptions of gerry- thats the kind of relationship ive always wanted (and finally found!!!) youre such a role model and strong woman- thanks for that! and youre right- iron helps almost immediately. ive taken a tablet and nearly felt 100% a few hours later. have you tried taking spirulina? thats a great iron/energy source- i love it. helps me deal with the kids i nanny for!! πŸ™‚ and much <3!!

  9. ann says:

    I knew you were going to be fine when you texted about being at the hospital πŸ˜‰ I’m working this week Tuesday to Saturday morning, if you happen by again… but if you just want a hug, just text me that you want a hug!!β™‘β™‘β™‘
    I love you guys πŸ™‚
    ~a

  10. Angela says:

    A friend of mine with cancer (Stage 3c Ovarian @ 35 years old) recently posted this video.

    https://www.youtube.com/watch?v=YTFPMYGe86s

  11. danielle says:

    Some of the shortness of breath could be anxiety-related. I have chronic anxiety, and have occasional episodes of feeling utterly plotzed, my heart’s not beating & seems like I’m not even breathing. It takes almost no activity to wear me out. Sometimes Ativan isn’t enough, or it just makes me sleepy.

    What you have been going through is breaking my heart. I hope you fire your dismissive dipshit oncologist and find a better one. And keep us all posted as much as possible so that we can be on top of sending you healing thoughts. xo

    • Sarah says:

      Danielle. I totally agree… I have anxiety too but because I had a low-grade fever and flu like symptoms we didn’t want to take any chances. πŸ™‚

      Anxiety is THE WORST.

  12. Diana says:

    Sarah… I suck with “there there” words and even any encouraging words. I always screw them up!! So I’m just gonna say: love <3
    But I am good at kicking ass…so if you want your oncologist's ass kicked, just give me her address! Silly Doctor…not checking your eyes! Seriously πŸ˜‰

  13. xjezx says:

    Raw organic Shea butter is really good for dry skin and its totally natural no chemicals or alcohol.

    Keep fighting. Stay Strong. xxx

  14. Sergio PΓ©rez Llanos says:

    I am outraged! How can your onchologist play it so cool and not know about all the side effects?! Moreover, how can she not be bothered to give you any solutions?! How is she supposed to be helping you with that attitude?! Sending you lots of good thoughts.

    • Sarah says:

      Thanks Sergio
      It’s frustrating … especially when you’re not feeling your best. It’s hard to speak up sometimes. That’s why I always go to my appointments with someone.

  15. Maria says:

    Hi Sarah – Just want to send you some love. When you’re suffering time seems to stand still, and I wish I could make it fly by for you. And I also wish I could find you a better freaking oncologist. Maybe one who, you know, actually LISTENED to you for a change.

    And for what it’s worth, I think you Tweeting when you’re scared is absolutely the right thing to do. Getting support – from wherever – makes the big, bad world feel less impersonal and scary. You do anything you need to get you through this.

    Love you,
    Maria

  16. Taylor says:

    Sweet Girl,
    Wow. My heart literally aches for you. But in a way that is so peculiar. First, I don’t really “know” you, but feel as if I do. I guess between being an avid follower of your cookbooks and feeling like you were right there with me making my vegan casseroles all the way from Texas, or from friending you on fb and reading your blog posts etc… but that’s not what’s particularly “peculiar” about my heart aching for you. What’s REALLY strange is that I seem to have this sense or “knowing” (which I have been prone to all my life) that everything is going to be/ IS just fine, and that ultimately you are going to be O.K. Your fears are my very own made real. I have always had this strange fear of death and dying from a very young age with no real reason to be afraid. And here you are…with a “reason” to be afraid. But I feel like a “grown up” interpreting a poor child’s nightmare. And that’s what I know this all is, Sarah. One big, ugly, FUCKING nightmare. And I’m so sorry you have to experience it. I am a student of A Course in Miracles and I thought the intro to the book was pretty spot on for this situation:

    Nothing real can be threatened
    Nothing unreal exists
    Herein lies the peace of God

    (or the Universe, or Spirit, or Force, or Yoda, or what-have-you)

    YOU…who you REALLY are cannot be threatened, Sarah. I hope you can find peace in re-cognizing this.

    Peace and Blessings and Miracles,
    Taylor xo

  17. Esther Patrick says:

    Hugs, Sarah xxx

  18. Ilana says:

    Fuck. I’m sorry, I got nothing else – I’m right there with you, only with less eyelashes and no ability to draw on those gorgeous drag brows (I generally end up with something along the lines of 84 year old mental patient.) It sucks being this tired, but I keep reminding myself that there’s an end in sight. You know, if I squint my dry eyes hard enough.

    -ilana

  19. jaspin says:

    hey sarah,
    just wanted to send you some love, and i’m so sorry you are going through this right now πŸ™

    you are so wonderful and so strong and SO inspiring i always read your blog and you give me so much inspiration and strength, I first got your vegan books when i was 18 im now 27 and i couldn’t imagine a life without them! and i agree with the others aloe vera is amazing for the skin so try that, and also ginger can really help with nausea as well but im sure u know this already πŸ™‚ also have you tried the bach flower remedies? if you are anxious or having trouble sleeping at times they can really calm one down they are wonderul! and you can even get one made up for you http://www.bachflower.com/

    xoxoxo

  20. nova says:

    Ryan and I always say we’re the best couple we know…except for Sarah and Gerry. You two are an unbeatably strong team.

    I’m sorry you’re having those bad thoughts, ever since my little bro died in the night I can’t go to bed without worrying my heart is going to stop too, which causes me to think about my breathing and my heart rate…which causes me to have shortness of breath and makes me all freaked out…which makes my heart beat weird. It’s a hard thought cycle to break out of. I don’t have any advice about it, just want you to know you’re not the only worrier out there right now haha

    • Sarah says:

      Love you Nova!! Love you so much.

      Maybe talk to your doctor about taking Ativan at night for a few weeks. It helps me calm my thoughts and lets me sleep 7 solid hours. I find I can get through anything if I have a good nights sleep. πŸ™‚

  21. Pingback: Movin’ on up! | GoVegan.net

  22. Nicole says:

    wow your tattoo over your port looks absolutely beautiful…and makes your port look more like art than a device. i was so embarrassed by my scar for ages (and still sort of am :(), because i was so focused on what it meant to have. thank you so much for inspiring me to show it off and love that little 2 inch zip mark and ‘poke’ hole scar….it’s a part of me. hey maybe when i’m better, i can get it decorated at the tattoo zoo…ooooo fun! xoxo stay strong <3

    • Sarah says:

      Your scars are your badge of courage, bravery and show that you are a survivor. Wear them proudly sister. πŸ™‚ show the world what you’ve been through and survived!! You kick ass!!

  23. jessie says:

    dear sarah,

    you have been an inspiration to me over the years, and i wish you a refuah shleimah–a healing complete and speedy. i am thinking of you and praying for the best, most wonderful things to happen to you–because you have brought so much compassion into the world because of your dedication to love and kindness, may love and kindness find a way to help heal you.

    very, very, very best,
    jessie

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