Half-way Point Lessons Learned

I’m half way through my chemotherapy treatment program. And, like any good PMP (project management professional), I figured now is a good time to do a quick analysis of what I’ve learned so far, what’s working, what isn’t, what wisdom others who have gone before me have shared. Here are a few insights.

Chemo Brain – or, when not to make decisions or write emails.

The day of and the day after chemotherapy is a very discombobulating time. Your body is going through weird and nasty reactions, and you have to deal with those as best you can. But your brain, well your brain is in ping pong mode. It’s trying to be rational, stay on top of symptoms and make sure you recognize them and head them off at the pass. It’s trying to keep you calm, and at the same time it’s got the whole WTF attitude going on (as in I can’t believe you are putting me and your body through this). There’s probably some denial in there (although it’s hard to be in denial when your body is violently reacting to the poisons just pumped into you), and there’s a good measure of courage and heroism.

Suffice to say there’s lots of conflicting messages and emotions at war in there – on a constant, never let up basis. I’ve learned that those two days especially, I am hugely vulnerable. I didn’t recognize it at first, but I see it now. I question everything. Simple decisions that require little to no analysis are, in that time frame, a really big deal. If someone suggests to me that I might not be able to do something or might need help because of my chemo, for example, I tend to accept it at face value (even though the day before my chemo treatment I was living proof of not needing that exact thing). My ability to analyze, put things in context – disappears. While I don’t physically feel frail or weak, my brain does. It ‘feels’ less than itself. Those two days I am the essence of vulnerability.

So, lesson number one – forewarn friends and family, anyone who might be on the receiving end of an email, text, phone call (any kind of communication) that things received during this timeframe should be taken with a grain of salt. Don’t assume it reflects truth or reality. Check in a few days later to verify anything in there. It’s kind of like the old ‘drink and dial’ days – we all know we shouldn’t do it, we do it anyway, and we regret it immediately after. Chemo communication is kinda like drink and dial – appreciate I thought of you, and cared enough to say/send something, and cut me some slack regarding the content (especially if it is a ‘bare my soul’ kind of missive).

Sensitive Skin – Barriers are Your Friends

My skin was sensitive to begin with. But chemo has made it even more so. That didn’t happen right away on the first round. But by round two, even the latex-free protective covering nurses put over the IV insertion for a couple of hours resulted in a 2-day rash. Sigh.

A friend who is 6 months ahead of me on the chemotherapy journey gave me a bunch of pointers on protecting skin and nails. Sensitive skin doesn’t just mean the parts you can see regularly, it gets sensitive all over. Especially in the nether regions. The way all that toxic stuff gets out of your body is through your pee and poo. As you eliminate, it makes the skin surrounding those areas incredibly sensitive. Here are some of her tips (plus a few of mine).

  • Skin all over becomes very dry – use lotion daily, as soon as you get out of the shower
  • Penaten is a great barrier for those very sensitive elimination points
  • Mouth rinses with salt water work really well to stave off mouth sores – and it has an added benefit of diminishing the ‘chemo mouth’ taste
  • Baby products are great for shower and general bathroom use – they’re kind to chemo skin
  • Coconut oil is really helpful for nails to keep them strong and moist – use it on fingernails and toenails nightly
  • Wear rubber gloves when doing dishes – every time! It keeps your nails (and hands) from drying out
  • A fabulous homeopathic ointment that works wonders on skin irritations is Unda

General Lessons Learned

  • Nausea isn’t always about barfing – you don’t always feel like you want to throw up. It can present as sweating and dizziness, without the urge to throw up.
  • Write stuff down. All of it. Document what you eat, how you feel, your temperature. They tried to dissuade me from recording my temperature every 3 or 4 hours (for my chemo, if you get a fever  of 38 degrees Celsius, 100 Fahrenheit – and it’s a real possibility you will get one – you have to get to a hospital as it’s a sign of infection), saying it wasn’t necessary, that I’d know if I wasn’t feeling well and that was the time to check my temperature. But now that I have a month’s worth of data, we can see the patterns as my temp spikes on day three post-chemo, and will stay high (as high as 37.9 yesterday for 5 hrs) for a couple of days. I don’t get anxious that I might have a fever (and hence need to get to hospital) when it gets above 37.5 for a couple of days.
  • Exercise helps. Definitely do as much as you can to maintain your normal workout routine. And if you can’t do that, go for walks – use a treadmill at the gym if it’s not nice out. It will pay dividends – improve your sleep, improve digestion, calm your nerves and generally help you be as well prepared for the next session as you can be.
  • Drink lots of water. Lots – at least a glass an hour. It helps flush the toxins out of your system, and helps manage both of the two dreaded side effects (constipation & diarrhea).
  • Listen to your chemo nurse. They have the answers, so ask them. And if they tell you to do stuff, do it. I followed my chemo nurse’s instructions between chemotherapy treatments and felt great. They do a checklist when you sit down for your next round, and she was shocked I followed every piece of advice she gave me. Apparently few do. I did and was better off for it.
  • Prunes and prune juice are your friend. They taste bad – I find it helps to have the juice at room temperature – but they work.
  • When they say hair loss, they mean everywhere. Arms, legs, pubic – it all goes. Inside your nose, your eyebrows – they go, too. People pay thousands to laser the hair from legs, armpits and bikini lines and we get that for free. (Trust me, I’d rather pay.)
  • Know your body as well as you can before chemo starts. Pay attention – understand your rhythms, your reactions, your needs. If you pay attention before chemo starts and know yourself, you can manage the side effects better and get back to your ‘normal’ faster.
  • Lower energy is a reality, but it doesn’t mean no energy. They tell you you’ll be tired and sometimes fatigued, but those side effects sheets they hand out cover all the ‘worst’ possibilities. Everyone reacts differently, and many have slight dips in energy. I’ve found that the first five days post-chemo are the ones where I have to manage my energy best, and then I get better each day – able to hit the gym and walk to work.
  • Ask your oncologist before you take things prophlyactically. I was using the Magic Mouthwash from the first day after chemo to keep mouth sores away. Turns out you shouldn’t do that. Wait for signs a mouth sore is forming (that ‘burning’ sensation or ache) and swish then. It will kill the forming sore and keep your mouth clear. Using it daily to swish and spit diminishes the ability of the mouthwash to work when you really need it.
  • Giving yourself an injection is not as scary as it sounds. Oh, it’s unpleasant, and I’d rather not have to do it, but you can do it. I find being methodical helps – rip open antiseptic wipe, assemble needle, pull plunger back to 1 millilitre point, etc. And, I talk it out loud. Even when I’m alone.
  • Look for alternate causes for things. I had pain in my tongue and assumed it was a sore, so used mouthwash. But, it could have been neuropathy (painful nerve endings). Or, it could have been the food I was eating – maybe too much acid on a hyper-sensitive tongue. (That’s what it turned out to be – and because I’d documented what I’d been eating, I was able to correlate my tongue pain to food intake. I stopped the mouthwash – which tastes awful – and changed my food and voila, no more tongue pain.)
  • Don’t be afraid to ask questions. Nothing is stupid or too small to ask. Really.
  • Get comfortable talking about every part of your body and every body function with your medical team. Especially your clinic nurse. They are your best resource. You have to be able to tell them everything – from your bowel movements to your sleeping patterns, your worst fears and your worst gas. Nothing is too personal. Only by sharing with them can you learn what’s ‘normal chemo stuff’ and what you need to pay attention to. Let them decide what’s unimportant. They won’t be embarrassed. And they won’t let you be embarrassed.

You are your own best advocate. By playing an active, engaged part in your chemotherapy treatment, you can improve your experience.

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One Response to Half-way Point Lessons Learned

  1. Pingback: Chemotherapy Graduation Day | biopsies and stages and grades, oh my!

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