olfactory memory

Three year (end of) chemo long term side effects update.

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Whew! What a mouthful!

But it’s October, which means it’s pink ribbon and breast cancer awareness month, and we’re almost at the three year anniversary of my last chemo (please let me know if it isn’t three years; quite honestly, I have absolutely no idea).

Long term side effects update. Cos yes, I have plenty, and no, there isn’t enough information about them.

Chemo brain

No change. Some days are better, some are worse, at least people are so used to me not finding words or saying the wrong thing or stopping mid sentence and having absolutely NO idea what I was talking about, so it’s not really a problem. And I have no shame – I’ll tell new people that I’m not stupid, honest, just have severe cognitive damage.

Lea is still a really helpful secretary cat, so sometimes if what I write ends up pure gibberish, I can still blame her.

F(l)atigue

Still an issue. Not as bad as it was, but I can’t really plan two things in one day – cos sometimes something as simple as going to my physical therapist exhausts me completely and I spend the rest of the day in bed.

Blood work

My blood has never been better. So yay chemo! It worked! It actually fucking worked!!!

Physiology

Body is behaving nicely. Thanks to physical therapist #2, my knees are functioning, my legs and thighs no longer feel like logs and I can run up and down the Potemkin stairs. Or up and down a mountain. Go me!

Which also means I can drive again, without pain in my knees and thighs, and Billy is The Best Car Ever. Or Guglielmo which is his fancy Italian name, since he’s Italian and all.

He needed a check up this August (PKK – periodic roadworthiness test). 16 years old (yes, he had a birthday party) and 212′ km under his belt – and all I needed to fix was replace the brake wires. He’s such a darling!

And the Tamoxifen which I have to take for the next 7 years or so – I love it. It is fucking awesome. Ya know my hormones that have been quirky and insane all my life? Tamoxifen gives me an extra boost of testosterone and progesterone and it’s doing wonders for my muscles and joints and everything else. 

Heart rate is – constant. It’ll probably never be as good as it once was, but by running up and down hills in the forest I keep it under control. It’s stopped racing like mad just cos I’m thinking of doing something.

Mental stuff

Still kinda inhibition free which is amazing. Chicago in December was fantastic and there is no way old Siri had made it there. Making new friends is fun. Compromises? Still not very good at that, but at least I’ve learned how to write formal FU letters.

Insomnia

Can be useful, too. No jet lag. You can drive through the night without needing sleep. 

More importantly, you get used to it. You get used to all sorts of bad stuff, to be fair.

Is there no bad shit?

Of course there is. There is always shit. In my case, the WORST long term side effect is that I have become The Most Attractive Being in the forest for all insects and arachnids. Flies, mosquitoes, ticks, wasps, deer keds, blackflies, they’re all SO attracted to me and love me and can’t stay away. Which is bloody annoying when I’m in the forest. Something happened to my blood and I’ve gone from dull and uninteresting to the number one target.

I have an eating disorder. Chemo threw my olfactory senses out the window and I more often than not struggle to eat properly. It’s difficult to explain. I’ll want something in the store, buy it, get home – and can’t eat it. Just thinking about eating it makes me queasy. All I want is beer, wine and chocolate.

Bad shit is mostly about how you take it. If you let shit overrun you, then it will. If you decide that you’re going to find the good stuff in bad shit, then you’ll find it. Tomatoes grown in sheep shit are the best, after all.

No tits

Seriously? No one notices… 🙂

Word of the day: cumulative

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Yesterday I had my fifth round of taxotere. I can safely say I’m over half-way through chemo! Onco was very happy, MR last week showed a reduction and his physical exam did the same. According to his measurements, it’s now 3*4,5 cm. We had a long chat about side effects and I got a new regime (Lyrica for the neuropathy and Nystimex for the fungal infection – it’s the same as Mycostatin but sugar-free, so should be trigger-free in regards to my perio).

I got the window chair this time! Orchid was dead, but who cares, my stuff is colourful enough. And I have finally found the Perfect Cup – haven’t spilt a drop in a long time with this one!

I also discussed my concerns in regards to Neurontin having such a great effect the first time but none whatsoever the second time (pain management and “head buzz”) and he told me that our bodies react differently in regards to meds and that this is totally normal. Nice to know. I also asked about the fungal infection and whether he thought it originated in my gut or mouth, and he was unsure. He’d also never used Nystimex, so we ended up with a nice microbiological talk about microflora of the mouth.

Stats were good, my white blood cell (WBC, leukocyte) levels are increasing but CRP was at 4 (very low), blood plates and % were normal, good to go for another round. We had a small talk about number of rounds of chemo and the op – we are in agreement that the more chemo I can push into this silly body, the better, and he also agreed that Boxing Day might not be the best day for surgery, but we are now deciding on chemo one round at a time.

Unless I manage 8, in which case there will be 9 and op the second week of January.

Five rounds of chemo means that I am getting cumulative problems. Increased WBC levels (normal levels are 3,5 to 10 but normal for me over the past 6 years has been 11-15). Last week they were at 12, this week 18. It’s the Neulasta injection that increases these levels so we’re still within an acceptable range, as long as the rest of my blood work is acceptable, but definitely a value that shouldn’t increase too much.

My nurse gave me a saline solution to rinse my eyes with. There is a slight possibility that the epiphora may be due to chemo coursing through my system and that rinsing my eyes whenever they start watering may alleviate it slightly. I got several 10 ml syringes. First try this morning – you know how syringes can be really hard to push down and then it just goes BOOM? Left eye not exactly happy with having 1 ml shot in at great speed.

And I am noticing cumulative side effects. The hydrocortisone pills I’m taking no longer give me two energy-packed days after chemo. I started folding and clearing away laundry and managed half an hour before body said “naaaaaaaaaaaaah, much better to write a blog”.

I did start on the Nystimex last night, hoping that it might prevent a complete fungal explosion, although I have stocked up on vanilla and chocolate protein puddings, chicken breasts and yogurt. Apparently one of the protein puddings tastes horrible but as I’ll only be eating them if/when my mouth gets really bad – I’ll use my olfactory memory to remember the best chocolate and/or vanilla puddings I’ve ever eaten!

I shall now try to fold some more clothes. Actually, no, that’s a fib. I shall try to sort clothes into their appropriate drawers and fold them some other day – if and when I have the energy – at the moment I’ll be happy to get all the clean clothes from the hamper into correct drawers…

The book in the photo is “Stien tilbake til Livet” by Long Litt Woon. Unfortunately, only in Norwegian as we speak but it has been sold to many countries and it is highly recommendable! Information, facebook page and a good book review (both in Norwegian).

Fungi should be in the forest, not my mouth

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Photo: Inger-Johanne Berger

A dear friend of mine took this picture, sent it to me, and told me that fungi should live outside in nature, not in my mouth, and I totally agree! But I love this face. Sometimes nature makes the most amazing works of art, we only need to look closely and they will appear! And I would love a forest-themed wig, made with leaves and mushrooms and conks and all sorts of fun things. This one feels like a reflection of myself, in a weird way.

The third and last of my major side effects is a fungal infection in my mouth. I’m used to having an extremely keen sense of smell and taste. Because of the periodontitis I have a massive hygienic regime of cleaning my teeth and mouth. I also need to take precautions in using antibacterial agents, as I need to keep the good bacteria as happy and vivacious as possible!!!

First round of chemo, I had a woolly sensation in my mouth for two days or so. Nothing to worry about really (I was already down with flatigue so non-functioning mouth wasn’t much of a worry).

Second round, woolly and non-functioning taste buds for five days. That’s a bummer cos you don’t really want to eat as everything tastes of either nothing or just weird or off. Your mouth feels as if you got badly burned on a cup of hot cocoa – a bit numb, a bit painful, talking isn’t really an issue cos woolly. You don’t want to eat anything sharp cos your gums and everything is sore. You certainly don’t want to eat anything that attaches itself to anything, cos your tongue is just not functioning at all.

Third round, I asked for Düsseldorf mixture cos it was supposed to help.

It didn’t.

My mouth was pretty much non-functioning for twelve days. I made a large pot of rice porridge on the Saturday and that was mainly what I ate for the next ten days. I like rice porridge and I could taste the sugar and butter, cinnamon I used cos it smelled good when I was pouring it on (my smell still works) and I could easily imagine the taste of the porridge. Olfactory memories are great things, cos it means that if you can get some of the taste, you can pretend that it all tastes as it should. I used so much cinnamon that it covered the bowl (and was reminded of my friend, who claimed the cinnamon diet was amazing) mostly to check if my taste buds were working again.

Düsseldorf mixture didn’t have any effect so after consulting with my dental hygienist, I stopped using it (as it’s an anti-microbial agent and probably maiming and killing off my nice bacteria).

Fourth round I got Mycostatin oral drops which is an oral suspension that provides local treatment of fungal infections. We were at war. I like eating food I can taste. My taste buds may like weird stuff, but eating food devoid of flavour is just off. After having checked with doc, pharmacist and specialist dentist (who prescribes it all the time) I was all set: standard deep teeth cleanse morning and evening, light brushing and mycostatin whenever necessary. Which for the first three days was on an hourly basis. And as it’s only effective as long as you are actually keeping it in your mouth, you get used to keeping your mouth shut for 15-25 minutes at a time.

The first two nights I would actually wake up every hour or so and administer it. I love insomnia.

The third evening my fiance had hamburgers for dinner. They smelled soooooooooo delicious and I got that devilish hunger for meat. Any kind of meat would do. I fried some hot dogs with tomato paste (cos, you know, taste and all that) and herbs and garlic and they tasted – nothing. I could feel the texture but was really glad they were cheapo hot dogs cos booooooring. No taste at all.

But after five days of intensive treatment, it feels as if I am regaining some control of my mouth. I could taste the cinnamon this morning. I think I could taste the cranberries in my rye bread (although that may have been the old olfactory memory, cos the cranberries are nice and gooey). I have another three portions of porridge left, so hopefully I’ll taste the cinnamon tomorrow morning.