breast cancer

Breast cancer is a gift for life. And death.

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It’s October, which means it’s Pink Ribbon Month, Breast Cancer Awareness Month (for your national wesite, check out NO, UK, US). In Norway the focus this year has been on long-term effects of cancer treatment. Guess what – a large percentage of women who have undergone breast cancer treatment never return to the work force.

And guess what else? The number of cases are under-reported and most of these women feel shame because they are unable to return to the activity levels of their previous job & personal life.

The Norwegian Directorate of Health/Helsedirektoratet have made a nice report of potential long-term side effects which can be found here (downloadable pdf); it’s in Norwegian.

Not because they don’t want to, but because somewhere along the line, they got some unpleasant side effects that turned out to be irreversible. I’ve already mentioned CIPN. CIPN can actually appear up to two years after end of treatment, can appear in women who weren’t bothered by neuropathic pain during treatment, and can be completely debilitating.

F(l)atigue can also turn chronic. Fatigue sufferers often find themselves ridiculed as lazy. They often receive little or no understanding for lying on the couch or in bed all day.

If you’re one of those people who call fatigue sufferers lazy, please read my blogs about it again. And again. And again. Until you realise that no, we’re not lazy. We would feel like we’re dying inside except that requires thinking which again requires energy which WE DON’T HAVE.

I’m not even going to venture into the psychological hell that a (single/double) mastectomy can send any woman into. Or chronic alopecia. Me, I don’t care. It’s not the first time I’m a skinhead and I’m loving having an arsenal of wigs to play around with – but that’s me. Permanent baldness is still a taboo.

I almost forgot about chemo brain. It is an actual diagnosis, can start long before you actually have chemo, can last for years, and is a mental fog that just won’t let go.

“Doctors and researchers call chemo brain many things, such as cancer treatment-related cognitive impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment. Most define it as a decrease in mental “sharpness” – being unable to remember certain things and having trouble finishing tasks or learning new skills” (American Cancer Society)

If the tumour is hormone-sensitive and you get anti-hormonal treatment, menopause may set in prematurely. It’ll probably be worse than natural menopause (due to it happening much faster on drugs) and you probably won’t be allowed to get hormone treatment to lessen the symptoms. Even if the tumour isn’t hormone sensitive, you may experience early menopause.

Osteoporosis is also a common long-term effect but as it is a well-known effect, bone density is usually monitored.

These symptoms are diagnosible and are, at least medically, accepted as such. Docs may not know of any treatment that can help, but at least they can give you a black-on-white diagnosis to help with insurance and/or benefits.

But not all women get easy diagnoses. Some of them get a mixture. Light fatigue, enough to make looking after your grand kids a nightmare, not enough to make you connect the dots. Aches and pains all over the system. Complaining to friends and family doesn’t really help cos they think you’re lazy. You need to work out more, exercise more, get out more, it’s your own fault.

So you go for power walks four days a week and go to the gym four days a week and you just feel weaker, but everybody’s saying that you’re just lazy and need to up the ante, power walks seven days a week and the gym five days and you just feel more and more tired. Only thing is – aching muscles and joints is another long-term side effect, and no amount of exercise or bad-mouthing is going to fix it.

Oh, and make sure you have a good dentist and get a full check-up before treatment, during and after. Many women end up having to draw several teeth and that’s expensive if you can’t prove that it was due to chemo.

A common side effect of taxanes is having your nails loosen and fall off. Yes, that is a thing. They shrivel and fall off. They can keep falling off for at least a couple of years and it is as painful and uncomfortable as it sounds. The exact mechanisms are unknown, but using nail hardener and dark nail polish, just not on the part furthest down where the nail “breathes” may help. Or not. The problem with not knowing the mechanisms is that one can only assume that it helps – statistically, who knows. At least iut’s a good excuse to wear lots of fun nail polish!

After a mastectomy there’s also a really big chance that you will experience a lymphedema and/or reduced mobility in the shoulder/arm of the op. Physical therapy can help with the mobility issues – but some patients will never regain full mobility.

There’s also the probability that you’ll find a lump in your remaining, so-called healthy breast. It’s probably just a cyst or benign tumour, but you’ll most likely have to wait days or weeks to get it checked out – thousands of minutes in hell waiting to find out if it’s malignant or not.

If you’re unlucky enough that the tumour is in your left breast and you need radiation over your heart, you may be at risk of cardiovascular problems.

And there is a large risk of getting cancer again. Just cos you’re cancer-free doesn’t mean it’ll stay that way always. The meds may cause cervical cancer and/or endometriosis so annual pap smears and ultrasounds are a good idea. Radiation will make you more prone to skin cancer, so you’ll have to take extra care whilst sun-bathing and never ever use a tanning salon/solarium again.

Oncologists no longer say that you’re healthy even if they’ve removed every cancerous cell from your body. If you’ve had breast cancer, it’s a bit like being an alcoholic – you might not have touched a drop in 50 years, you’re still an alcoholic. You’re temporarily cancer free, and you will never feel safe from cancer ever again.

“Breast cancer can come back or metastasize (spread) in three general areas:

  • the breast area where the cancer was originally diagnosed; this is called local recurrence
  • the lymph nodes in the armpit or collarbone area near where the cancer was originally diagnosed; this is called regional recurrence
  • another part of the body such as the lungs, bones, or brain; rarely, the opposite breast; this is called metastatic or distant recurrence” (breastcancer.org)

25% of all women who have breast cancer will experience recurring cancer (cervical cancer or skin cancer as a nasty, long-term side effect aren’t “recurring” so those cases are in addition to the 25%). The good news is that we now have a lot of drugs and treatment regimes so even with metastatic spread, chances are quite good that you can live for many years with chronic cancer.

The bad news is that recurring cancer can appear many years after you were treated and labeled cancer-free.

The really bad news is that metastatic cancer can be difficult to catch, even with yearly check-ups, and the longer the cancer can spread, the greater the risk for it being terminal and not chronic.

Five year survival rate for primary breast cancer is 89% (Norway, 2006-10). The same rate for metastatic cancer is 20%.

So … early detection is important. Use the lemon chart and visit knowyourlemons.com as there is a lot of great info there. See your doc if you’re in doubt. Don’t think “It won’t happen to me” cos it can. Cancer doesn’t discriminate and it doesn’t matter how rich, smart, beautiful, funny, young or amazing you are – you still might get it.

 

Looking for family, looking for tribe (but I’ve found mine)

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Give me some place that I can go
Where I don’t have to justify myself
Swimming out alone against this tide
Looking for family looking for tribe

Although Family (Sullivan/Heaton 1987) isn’t my absolutely fave NMA track (NOTHING can ever top Vagabonds (Sullivan 1987) and all the amazing memories and good vibes it brings back), the chorus is so true in my heart.

The last blog posts have been rather depressing, so I thought it was time to write about the good stuff. Cos apart from the fear of CIPN and being a bit handicapped at the moment, I’m still feeling good and on the right track.

Me’n’my tribe. They surround me and carry me and protect me and keep me safe.

Mostly because I do have the most amazing tribe looking out for me! Time to give praise where it is due. And here they are, in random order:

I have the most amazing fiancé. He takes so good care of me. He’s the reason I get out of bed every day. He follows my lead on how this is going (ie isn’t all doomsday and super-worried cos I’m not). He gives me what I need when I need it. No matter what, if I need a hug cos life is hard or if I need him to talk about something silly cos I need his voice to move my focus from the pain, he does it without asking stupid questions or making useless suggestions. This journey would be so much harder without him!

I have a hospital support person. She comes with me to the hospital when she’s not working. She’s awesome! Yesterday, she was such a great influence that I managed to make it to the MRI and blood work and all sorts without spilling coffee on myself at all (yes, I do tend to do that, I take it as a sign that I’m not quite an adult yet). She makes sure I have enough food and drink, she’s excellent company during long waiting hours and is definitely the perfect hospital support person! She’s also my “New Model Army live in Oslo” person so we’ve seen them twice so far. Hopefully it won’t take them three years to return…

I have a sushi person. We have dates at Sea Sushi in Oslo, and we always order the same thing (F27 and H15). And it always tastes absolutely amazing! And she’s amazing, too. She sends me post cards. I love getting post cards! She has turquoise hair (I feel I was a good influence on that part) and really interesting jobs.

I have a coffee (and concert) person. She works really long hours and has a very busy schedule but if we manage to sync diaries and she can sneak out for a coffee, we do. Working in the middle of Oslo means we’ve seen plenty of interesting/fun/scary stuff on our walks (just please don’t make me eat that raw food chocolate ‘cake’ again…)! We also share a love of Industrial, so we’ve seen Laibach and Ministry together (I just need to book her waaaaay in advance) and hopefully we’ll get to see them again soon!

I have a hair person. She almost cried when she chopped off my hair, but she was brave and we had a really fun day. She was the creator of the most amazing hair cut I’ve ever had (it was super short and the style lasted as long as my pink hair did) and the first to dye my hair bright pink. She’s my second longest friend of the lot and she means the world to me. She is also the reason I do have a functioning, brand new ear thermometer, cos basically I have no immune system and could die from a bad infection. If I get a fever I don’t get to pass GO or collect $200, I phone the onco ER and they decided what I have to do (in my case, “fever” means two readings over 38°C in 30 minutes or any single reading above 38.5°C). I tried it out and had to laugh cos within 5 minutes I ranged from 32.7°C to 36.8°C (8 measurements). The statistician in me snorts and finds my lack of consistency hilarious.

I have a nutritionist. He’s awesome. He was the one who figured out that my weird food intolerances were actually a histamine intolerance, so now I take an anti-histamine every morning and can drink milk. And eat rice porridge. I have no idea what I would have survived on without that. And I can eat loads of stuff that made me really sick for years and years. If I have any nutrition-related questions I know that he’ll answer them quickly and correctly. He’s also the guy who told me (once I was on chemo) to splurge on sugars cos that’s what my healthy cells want, and that gluttony is good.

I have a pharmacist. If she can’t answer any medicinal query I have, I have no idea who else to ask. If I need any meds she makes sure that her pharmacy has them (it only takes a text). She’s also a steady supplier of coffee and sugar bombs to feed the glutton in me!!

I have forest people. I love foraging for mushrooms, but this year, my body has been unable to actually pick all the mushrooms. And there is nothing I hate more than going foraging and having to leave mushrooms behind. Luckily, I have forest people who will walk with me and pick all the mushrooms that I can’t pick, and if I do end up picking a fair amount they’ll carry them for me. I’ll point out a patch of mushrooms and they’ll go “Hang on, we haven’t finished picking these yet!” and I’ll sit and enjoy the smells and sounds of the forest.

I have an old friend. We go back almost 30 years – that makes us sound ancient, I know – and she’s an all-rounder! She helped me pick out a wig, we’ve done food and concerts and phone calls. She’s always there if I need her and I can always count on her!

I have a new friend. After a couple years’ facebook friendship, we finally met irl a couple of weeks ago. We chat loads and she keeps sending me fun internetz ztuff and makes me laugh. Even if she lives in a silly town, we have a great date planned for after I’m done with treatments.

I have a road trip person. We go on looooooooong road trips abroad every 2-4 weeks (ie Töcksfors). Sometimes we even go as far as to Årjäng. She’s also my forest garden person and we’ve laid some awesome plans for next year!

I have cancer people, both friends and strangers (in a couple of bc facebook groups). They’ve given me good advice, they have great suggestions on how to alleviate side effects, and they’re quick to reply to any query I may have and I don’t really have to explain anything to them cos they understand.

I have social people. They invite me to fun stuff: outings, events and restaurants, and they make sure I have a great time. They always have a spare bed for me and ‘su casa es mi casa’. Sometimes meeting up irl is difficult cos of my neuropathy or being carless, in that case we chat and make plans for what we shall do when I am mobile again. I like making plans. I like chatting with people. It’s the one thing I can do even when my mouth is painful, I can’t walk and I’m the lead in the movie franchise “Carless in Kroer”. Then again, I also like spontaneous people who call and say “I’m fifteen minutes away, ready for a road trip?”. It’s more difficult to cancel if the invitation gives you 15 minutes to shower, brush your teeth and get dressed. Yeah, I never spent much time in the bathroom. Social people are also good for commenting on the blog and the facebook page. I love it when the inbox reads “1 new message”. It’s almost as fun as a post card!

I have sistahs. In addition to the two I have in England, I have a twin in Oslo. She’s awesome, too. She’s a fierce tiger who keeps sending me cheery messages.

I even have an adult person! Which I need, every once in a while, cos I suck at adulting, big-time. Never learned how to do that.

I have animal people. They have horses, sheep, cows, pandas and hairy piglets. They take me on expotitions (though we never go to the North Pole) and even if I do sometimes have to get up at 5:30 am (that was seriously far too early), I always enjoy myself. Just because my body doesn’t want to ride doesn’t mean I don’t like hanging out in stables, and calves are always fun to watch. And who doesn’t appreciate knights in shining armour jousting on a hot summer’s day!

I have forin people. I love them to bits but they live in other countries so I won’t be able to see them for absolutely ages. Luckily, there is chat. And the postal system.

I have helpful people (in addition to all of the above). If we’re out doing something, they make sure I don’t overexert myself. They’ll pop me on a bench so I can rest, make sure I stay caffeinated and fed, carry heavy stuff and do the stuff that some part of my body refuses to let me do. They’re the ones who ensure that I can do seminars and meetings and stuff and I cannot thank them enough.

And finally – I have you. If you’ve read this far and thought “She’s not going to mention me” then here’s to you. Thanks! Writing a blog is more interesting if you know that at least one person reads it!

But … yeah. I have the most awesome tribe. They’re not afraid to ask questions but realise that I don’t necessarily need to talk about my situation. They – you – keep me going and help me keep my mood and chin up. Thanks. There’s a massive party on the other side of this <3

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.

Neuropathy – terror with a capital N

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I’m not really afraid of much, to be honest, and although I sometimes have to face my fears (driving in snowstorms on icy roads) I tend to just avoid stuff where I don’t feel comfortable (roller coasters and great heights). I don’t mind spiders or snakes or other yucky things. I don’t mind that my hair’s all gone and might not grow back (though that’s for another blog).

But chronic neuropathy – that scares the hell out of me.

Neuropathy is the second nasty side effect I get. It comes from neuro = nerves and pathy = sickness, and basically means that your nerves are ill. The physical nerves. The ones that transmit sensations. The ones that cause phantom pain in amputees. The ones that make your nose hurt when you wax your legs.

Neuropathy in the extremities (feet and fingers) is a common side effect for taxanes. Unfortunately, it can also become chronic.

Let me try to explain what neuropathy feels like.

In case you hadn’t noticed, I love my heels. I love dancing. I love dancing in heels. For everyday wear, I’m more boots and sturdy footwear, but for fun, I used to love putting on my heels and sashaying along.

These are my favourite pairs. Were. Still are but there is no way I will be wearing them for a while. If you look at them – I cheat. They have really sturdy soles that are a great support for my feet which means you can dance all night without noticing that you’re wearing heels!

Now, imagine that the soles are really thin and flimsy, you can feel every grain of sand that you walk on. They still look good but aren’t really all that danceable. Yet you go out dancing, with the flimsy soles, all night long, and you wake up with really sore feet cos that’s part of the deal. All your feet want to do is be kept off the floor. But you go out dancing again, and dance the night away in the same flimsy shoes, and the next day you are in PAIN. Every nerve underneath your feet is hurting, and your ankle is kinda complaining, and you seriously regret both the first and certainly the second night of dancing.

But you love dancing, and you want go out again for the third night in a row – but this time, your feet revolt. They can’t take any more. Our bodies are a bit awesome that way – they will refuse us doing stuff that is dangerous. Your hands are having problems putting them shoes on cos feet = pain at this point.

Instead of going out and having fun, you get in the bath cos you can’t really walk. The soles of your feet are burning. The bath doesn’t help, so you figure that crawling instead of walking is a great plan – except you keep hitting the floor with your burning feet. You drag yourself onto the couch and decide to stay there the rest of the night cos at least the pain is slightly less (although you are having problems concentrating cos – pain brain – not much higher cognitive function there). And the couch is almost as comfortable as your bed, to be truthful, and you don’t really need to brush your teeth cos that demands standing – and that is so out of the question.

That’s neuropathy. And if you got it because you danced too much, chances are it’ll fade. If you get it from chemo there is a very real risk that it will become permanent.

Neuropathy isn’t a diagnosis, it’s a symptom. A lot of illnesses (and meds) can cause neuropathy. Unfortunately – there are very few treatment options. I was prescribed gabapentin/Neurontin which is an anti-epileptic drug. It helps som people. Others get some help from pregabalin/Lyrica. But for a lot of sufferers, neuropathy cannot be treated and the pain is constant.

So yeah, I am terrified of CIPN (Chemotherapy-Induced Peripheral Neuropathy). Every day I have neuropathic pain, I wonder if this will be something that returns in a month or a year for eternal feet burning.

And did I mention it also attacks my finger tips? Try picking up pills with non-functioning finger tips. Great fun and an interesting challenge.

I got some fluffy slippers. I have no idea why they seem to make things worse. Maybe cos the sweat isn’t released out? But I love my pink fluffy socks! Between the neurontin and these marvellous babies, at least I can kinda walk.

Rice porridge in da house…

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It’s 10 am on a Saturday morning and the oven’s on. Gonna make me some rice porridge. Not cos it’s a healthy breakfast or anything, but at the moment my mouth feels as if it’s filled with cotton, and my mouth is a bit in denial. It doesn’t think it’s capable of chewing or swallowing or doing much.

Fatigue – when you didn’t realise that there is a whole other world past knackered.

Fatigue is when your body has so little energy that thinking about getting out of bed is exhausting. Fatigue is when you really want to brush your teeth cos cotton and stuff, but the walk to the bathroom feels like a marathon.

Fatigue is having a bottle of Düsseldorf mixture in the bathroom, which alleviates the cottony feeling, but being too exhausted to walk in there and rinse.

Fatigue is watching five eps of Friends in a row, that you’ve seen too many times and Ross is really annoyving, with commercials, cos the thought of standing up from the couch is too much hard work – let alone the actually physical nature of standing up.

Fatigue is trying to write a blog that makes sense, and lose all track of where you were going…

Fatigue is having rice porridge for brains.

The flat blog (cos flatlining would be over the top)

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I tend to blog when I have energy. But now that I’m on chemo, there are more flat days and they take more space than before – so here’s the flat blog. Just in case you think I’m happy and energetic and out doing fun stuff all the time!

Second bout of chemo and it’s developing as expected. I spent most of treatment day in bed (cos going to the hospital and spending hours there fatigues me). Thursday and Friday weren’t bad – I’m thinking that the meds don’t really hit the system until day three.

Yesterday I was flat. Not Runaway pancake flat, just flat. No energy. No strength. No inspiration. But this was as expected (after the first bout) so I’d been smart and made arrangements to go mushroom hunting with a friend. Not because I expected to be re-energized, but because I wanted to see how far I could push my body even if I was flat!

We ended up with a really nice, three hour walk. Hunting means straying from the path more often than not so we walked about 2 km and I ended up with 8 kg mushrooms, she probably got twice that. That’s not a big haul in my world. When I was at my fittest I could pick 30-50 kg per trip, but that’s a few years ago – and I am most grateful to have dear friends who will accompany me on foraging trips and pick the foods I don’t have the energy to pick & clean!

Probably one of the smartest things I’ve bought this year. Pink, fluffy, soft, gigantic socks.

Got home and collapsed – slept for five hours. Watched a silly movie and slept for ten hours. Woke up and was void of energy. I’ve noted ‘flat’ in my calendar for the first weekend after chemo. I’ve tried to clean the mushrooms but only managed ten-fifteen minutes at a time. I’ve slept – and slept – and slept – and my feet are in pain. Neuropathic pain in the feet is expected, normal, and quite debilitating – it feels as if I’ve danced for a couple of weeks in flimsy high heels.

I’ve been wearing these fluffy pink socks to try to alleviate some of the pain. At least walking is slightly less painful but I’ve tried to keep my feet off the floor most of the day. And tomorrow will be worse. I asked the oncologist about my disco ball of pain and she told me “That’s a common side effect from the Neulasta, here, have some pain killers“. Preparing myself for pain day – I might actually take a sleeping pill to get through the day.

In the mean time I’m going to dream about my new, favourite boots from Demonia – wow! I’m in luuurrrrrrve!!! Wish list, people. Wish list. You know you want to see me in those.

Change of diet – from spinach to sugar

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I’ve been living on the strictest no-carb diet for three months now. Luckily for me, I do live my spinach and broccoli and lettuce and cucumber, and I’ve even enjoyed my restricted diet. Loads of eggs, bacon and cheese will help brighten any diet and the lack of hot flashes has been most enjoyable. And yes, they did return as soon as I ate anything with more than a whisper of carbs.

But now that I’m on chemo and we’re killing of cells left, right and centre, I had to change my diet. Away with anti oxidants and healthy foods, now it’s all about feeding the healthy cells – and the easiest, best food for them is fast carbs. Sugar!!! Loads and loads of sugary goodness!!!

So thanks to my nutritionist friend, my docs and the Personal Binder every chemo patient gets, the last two weeks I have been gluttony personified.

Healthy eating is important. Healthy means “what your body needs”. The day after my first chemo, I needed a double latte and a gigantic muffin with huge dollops of blueberry jam, yummy banana and some healthy seeds on top.

Seriously. Gluttony is important.

Friday: two gigantic mugs of hot cocoa (made with proper chocolate) and a massive beef sandwich. Oh yes, I could feel my healthy cells loving this new diet!

Monday: these Polish caramel sticks were perfect. Beskidzkie Łakocie paluszki carmel.

 

First round of chemo – first round of side effects

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You can read all you want about chemo, but every person’s experience is different so hope for the best, expect the worst, and you’ll find out what you end up with somewhere in the middle.

Most chemo meds require anti side effect meds as well. For my paclitaxel/taxotere I get dexamethasone, a synthetic corticosteroid (two doses before, four after) and one injection of Neulasta 24 hours after the chemo.

And although I’m still waiting for the side effects of my yew meds to set in – I have most certainly met those of my companion drugs.

Dexamethasone gives night sweats. Just as bad as the tamoxifen before I went off carbs. Swimming in sweat all night, waking up every hour or so, four nights of interrupted sleep. Now that autumn (and a chilly one at that) has set in, jumping between hot flashes and cold ones is not much fun – all through the day and night – and me being worried about getting an infection or a cold – not much fun.

But all things pass. Night sweats started on Tuesday evening and I got a good night’s sleep on Sunday. Thursday through Sunday gave me some pretty flat times – of the “I hope I make it to bed before I melt like an ice cube”.

Then comes Monday with slight rays of neuropathic pain in my lumbar region throughout the day. Not bad enough to knock me out, more of an annoyance. I much prefer constant pain – I can deal with that. These lightning bolts were completely different and they got worse as the day wore on.

I’m no stranger to pain. I can deal with constant pain (usually in bed with the duvet over my head) but this – this was really bad. It felt as if I had a disco ball in my lumbar that was sending out shards of painful lightning rather than fancy lights, and not only was the frequency increasing, the shards were getting longer and being sent down into my feet and up into my neck and shoulders and even got my tears going – and that’s a really bad sign. I took a couple of Celebra cos they’re the “nastiest” meds I have and figured that if this was how the next four months are going to be, I am staying under the duvet for the duration…

But the shards dulled slightly after a couple of hours, and although I was completely knackered at least I was able to sleep. No pain, no sweats, just blissful, dreamless sleep.

And Tuesday there was no disco ball.

I have to admit that I have been good and had naps most days – it’s not as if fatigue isn’t a natural part of my life – and I have been very happy that apart from these incidents, I’ve been pretty much side effect free. I have got chemo brain though (what’s new) so memory even worse than normal!

I probably jinxed it now – but we’ll see in a fortnight how things are developing…

Chemotherapy vs the Chemist

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2

I thought of this title a long time ago. As many of you know I almost majored in Chemistry (I just need to write a thesis) but ended up with a major in Forest Pathology. Today, I realised that it would be better off with Chemo vs the Forester, but it doesn’t sound as good!

Taxus sp. in Rogaland arboretum

For some reason I have not connected taxanes with Taxus sp, although I know that the highly poisonous yew trees have been found to be useful in medicine. I must admit that although I can easily see how Salix sp became Aspririn (in older days, chewing willow bark was found to be helpful against headaches and fevers), I have no idea how they turned yew trees into a highly potent and effective chemotherapeutic drug. Did some person with cancer chew on it?

And it is effective albeit a bad-ass drug. It’s also really difficult to synthesize because of the multitude of chiral centres (Taxol which is another taxane has 11). Enantiomers are bad enough if there are one or two in a chemical formula (see how I brought the chemistry back in?) but 11 – back when I took Organic Chemistry we were happy if we managed to get one right.

 

More Taxus! I love these trees!

Today started pretty early (up at 5:30 am) and with a few cups of coffee, I was pretty much awake by the time the taxi picked me up at 6:55. For obvious reasons one is not supposed to drive or use public transport when getting a dose of chemo! The taxi took me to the medical bus pick-up point, and the bus was awesome! I got this really nice leather recliner so I could stretch my legs properly and was at the hospital at 8:10, long before my 8:30 appointment. As always – spilled coffee on my jacket. Nothing new there.

You probably all know the drill. Sit in chair, have needles stuck in arm and retracted cos they didn’t work properly, moved to bed to take EKG, back to chair, new needle (bad needles today), cup of coffee, blood pressure measured, new needle – three’s a charm – talk with onco and two nurses. Onco clears the room (which kinda worried me) but it was only to tell me that she’s taking a sabbatical from October 1st. YIKES!!! How can she leave me like this???

Nansy of Arguably Venomous Mammals at Northern Green Gathering. Check them out before Soundcloud disappears!

 

Make jokes with support person (SP). Make bad jokes to nurse about vodka in the saline solution (got that first). Get requisition for wigs or headware (whatever that is defined by – a top hat so I can start my steampunk look?) and put on waiting list for make up class (woohoo! Maybe – just maybe – I’ll learn how to do proper make up. About time, I guess).

The meds I’m getting is actually called Docetaxel (dxl) but it’s still Taxotere. Saline was followed by dxl and I didn’t notice much of a difference. Nurse was following me closely to make sure I didn’t experience any allergic reactions, and took my BP at regular intervals. It was pretty close to normal most of the time – apart from that one time I had a new cup of coffee and had taken a large sip! They did tell me to drink plenty of fluids…

250 ccs of dxl and an extra 800 ccs of saline later, I was all done. No reactions, no problems, didn’t notice anything. Taken home by taxi. It’s been raining cats and dogs so I’m not unhappy about not having to brave cars, trains, buses and Shanks’s ponies!

OTOH SP and I had a slight disagreement regarding cats in the room (if they haven’t been spesifically forbidden, how do you know they’re not allowed?), a lot of coffee and laughs. Side effect from tamoxifen: laughing so hard you cry till your eyes turn red. Not sure I should report it.

Got home, snuggled in bed, slept for a few hours, still feel remarkably side effect free. Not sure how long it’ll last but I will enjoy it as long as possible!!!

From heaven to hell (we are now entering phase II)

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Magical purple willow lantern

In 12 hours I will be waiting for my first dose of Taxotere. Taxotere is an anti-cancer (“antineoplastic” or “cytotoxic”) chemotherapy drug and is classified as a “plant alkaloid,” a “taxane” and an “antimicrotubule agent”.

Worst case scenario: chronic neuropathy, myalgia and arthralgia; chronic hair loss and acute nail loss; nausea, diarrhoea and vomiting; fatigue, weakness and fluid retention; anemia; fever and insomnia.

Yay.

Went to the hospital for a new biopsy today. On the way home, a semi had blown a wheel (or something) so we were all stuck in a tunnel for a long time. Long enough for P6 Rock to play both Road to Hell and Highway to Hell. Not sure if it’s a sign of sorts. Happy that DAB radio worked in that tunnel.

Some have asked me why I’m getting chemo before the operation instead of after.

As you may recall, the tumour shrunk dramatically the first couple of weeks. I’ve now been on Tamoxifen/Zoladex for 6 months and it stopped shrinking a couple of months ago. Although it’s still shriveled and deflated, it’s still almost the same diameter as the first time I had an ultrasound (ca 5 cm) so instead of calling it quits with my status as guinea pig (let’s face it, not much use in checking effect of meds after the mastectomy) The Powers That Be want to see if chemo after tam/zol will reduce the tumour more or if it’s as small as it will get.

So we’re entering phase II instead of just testing tam/zol. Hooray! I get to be a guinea pig for at least 8 more weeks! And I can now blame “chemo brain” for everything I forget.