Are we there yet?


Alright chemo, it’s been 16 weeks, and I REALLY want to be done with you! Here’s where I’m at…

I’m tired, some days bone tired, most days winded-walking-up-the-stairs-and-taking-unexpected-little-naps-sitting-up-on-the-couch tired. And I sit on the couch a lot. I plan one thing to do each day, whether that be an appt, coffee date, vacuuming, and that’s all I can do. And some days I can’t.

I’m nauseous. It gets a bit worse each week, but it’s not debilitating. It’s that low grade ugh feeling that you could vomit if you wanted to (and I NEVER want to) so I eat a ton of carbs because they are the only thing that seems to keep the nausea controlled somewhat. The thought of having a salad – nope, not a chance. The ONLY non-starchy vegetables I’ve been eating are green beans, whatever veggies come in my pho that are cooked (staying away from sprouts right now because they can carry salmonella and I can’t fight that off!) and the pickled turnips (is this starchy?) and hot peppers in my shawarma sandwich. I’m sincerely hoping that when “they” say to not eat your favourite foods while having chemo because you’ll never want them again will include the crap I’ve increasingly put in my body the last few weeks. Healthy foods LOOK so appealing (trust me, my fridge is FULL of them that I throw out every week), but I can’t put them into my mouth.

Crapfest case in point — on Halloween (chemo day, and every Tuesday since) I came home in my Benadryl haze and grabbed 4 ‘fun size’ Aero chocolate bars on my way up to bed. Jammed two of them in my mouth and woke up 4 hours later to a chocolate drool covered pillowcase. I wiped my face, covered my pillowcase with the sheet, jammed the other two bars in my mouth and went back to sleep. THIS is cancer my friends.

This behaviour of course leads to weight gain. The steroids make you hungry — and I’ve felt hunger a few times, but then don’t want to eat because I’m nauseated, but I eat anyway, and then I feel less nauseated but with tight pants.  Because of the fatigue and windedness I can’t exercise at all the way I’d like to, running is a no go, and walking gets harder and harder. I’m more of a napping bump on the couch.

I’ve done VERY well where the neuropathy was concerned and thought that maybe I would be one of the few to squeak by without it, but alas that’s not to be. My hit-with-a-hammer feeling nails now have numb finger tips, and the bottoms of my feet feel are getting numb too. I’m taking ALA (alpha lipoic acid) and I think it’s helping because I’m less numb today than I was the days right after chemo, so that makes me hopeful. Of course the nurse who hit a nerve in my arm trying to do the blood draw last week didn’t do me any favours since any time I stretch out my arm (which is all the time!!) I get that same zing right down my arm through my fingers that I did when she hit it. I hope that sucker settles down because numbness and electric shock is not my idea of a good time..

I’m cold. My temperature doesn’t get above 96F/35.5C. My bald head doesn’t help with that at all so I’m wearing beanies, knits and buffs all the time. Steve is worried that my hair will grow in weird because of it.

Speaking of hair, can you have clear hair? Because that’s what it looks like, or rather when you look REALLY closely you see hair but it’s void of colour. Might be white, might be grey, might be blonde. Lots of bald patches still. Not a great look really, but since you can’t see it without an electron microscope, it doesn’t matter. And to the hair extensions company that followed me on Instagram? Not happening.

My last chemo infusion is 22 days from today. And other than the sleeping, eating and hair measuring (full disclosure, there is hair inventory too), I’m planning, because that’s what I do. I never stop thinking of the ‘what if’s’, and I have long hours in the night when sleep is elusive and I fill that time lying in bed in the dark making plans. Two examples – let’s start with the less fun one.

Ten days ago my Oncologist went over the MRI results with me (his colleague went over them with me the previous visit) and when I was glum over Timor’s 30% shrinkage, this was pretty much his reaction:

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Oh.

And he went on to say that the MRI can’t show what’s dead tissue and what’s still active cancer and that we won’t know until after surgery when the whole thing is tested. That’s hopeful, and good to know!

So back to me, because this is all about me. I need to have a plan, and mitigation strategies should that plan not roll out the way we want. So Plan A is surgery, no trace of active cancer, have radiation if required, and done. What I need is a fully defined Plan F, because once I have Plan F and all mitigations in place, I can put that on a shelf and only go to it if I need to. Once it’s on the shelf, I no longer stress over it because I have a plan. Make sense?

So I asked him if there was a possibility of needing more chemo after the surgery. He said that if there is still active cancer in there and if there was an experimental drug for Triple Negative Breast Cancer, then they would put me on that regimen (there currently aren’t any), and that it would be a pill and not an infusion. He also said there is another pill they could put me on that’s not specifically for TN but has shown some results. So these scenarios were added to the appropriate plans.

In thinking about this further after leaving the office I felt a bit uneasy because it sounded like there’s not a whole lot out there treatment-wise if Plan A doesn’t materialize, so I will have questions for my surgeon next week.  I know this is disaster thinking, but nights are long OK? Don’t get me wrong, I am CONVINCED I will have a good outcome, but I need to have my ducks in a row just in case.

ducks-in-a-row

Ok so onto the fun planning! This has to do with recovering from the damage this chemo has done to my body. I’ve got the daily meditation and stretching down. The clean eating will come. It’s the exercise I need to plan for, and I’m so excited because it seemed to take forever to see the end of the chemo road! Exercise was prescribed by my surgeon – do as much as I think I can and then do more – which is what I’ve been doing. I’m told my energy will come back fairly quickly once my treatments are finished. I have a broken treadmill (Black Friday sales don’t fail me now!) and a gym membership, so I will start with a couch to 5k program to get me running again. After not being able to lift anything over 10 lbs because of the PICC line (thankfully my dog Mo has lost weight with all our walking so I can safely lift him now!) I want to lift all the heavy things once it’s out! So off to the gym I will go. I have some short, medium and long term goals around this training. I am REALLY excited by this because I’ve been having some serious FOMO (fear of missing out). Everyone I know is out there doing cool things on the trails, running races, etc. And I’m on the sidelines watching. And I fucking hate it. I’m happy for them, but I REALLY feel like I’m missing out, left behind, call it what you will. It’s all in my perception of course, because my friends are awesome and can’t wait for me to be back and have offered to come out for walk-runs with me when I’m ready, but it doesn’t change the fact that 6 months ago I was happily running the trails (though really tired) and now I’m not. So I stuff those feelings down with a big assed donut because I know my time is coming!

So training… My heart is messed up right now – my resting heart rate is in the 80’s when it used to be in the low 40’s) with quite a bit of arrhythmia. This is no doubt due to more fatness, less fitness, and chemo related heart damage. None of this matters because I’m still going to train, but after all these months, it’s going to be back to basics. I’ll be using the MAF Method again, which requires heart rate monitoring. This method works, I did it in 2012 and I was running faster than my legs could push me at 120 bpm). So I decided in the middle of the night Thursday (because steroids don’t sleep) that I would sell my beautiful white Suunto Ambit3 Sport that I bought in January (if you’re looking to buy one, mine is listed here), and buy one with a wrist heart rate monitor because I don’t love a heart rate strap. I had chosen the one I wanted and decided I would buy it once my watch sold. Two hours later I get a Facebook message from the Running Room telling me I won THE VERY WATCH I WAS GOING TO BUY. I had forgotten I had entered a draw on Facebook weeks ago to win this watch. THANK YOU RUNNING ROOM!! The universe is giving me yet another sign that I will be back to the healthy fit me by removing roadblocks! Amazing right???

22 days and counting…

4 thoughts on “Are we there yet?”

  1. Hi Una,

    Thanks for the update. I feel so much for you and I hope to see you soon. I am glad that you are planning your road to recovery. I am sure that you will do very well with your determimation and your positive attitude.

    You amaze me so much. Counting down to your last chemo !

    Sylvie

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