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. 🙂

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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