pink ribbon

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… 🙂

Fear Factory

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Some questions should never be asked.

Of a person who has just been given the cancer diagnosis, “Aren’t you terrified?” is one of them.

It’s probably one of the stupidest questions on earth.

Most people who are facing cancer treatment are scared. Being asked it is about as useless as “Are you alive?” or “Are you human?”, and worst case scenario, you end up scaring the person even more.

I’ve never been afraid of my own cancer, but I was talking to a very dear friend who had cancer for the first time at age 22 (a few years and couple of cancer rounds ago) who said “I am terrified every single day of cancer” and she’s not alone in that.

Waiting for bad news is terrifying, this is standard human behaviour.

Finding that damned tumour is terrifying. Waiting for the results of pathological testing is terrifying. Waiting to start cancer treatment is terrifying. Going through treatment is terrifying. Waiting to find out if the treatment works is terrifying. Waiting and hoping for the “cancer-free” message is terrifying.

If you’ve survived cancer you will always be terrified of cancer, for the rest of your life, because the probability that you will have cancer more than once is highly probable. Breast cancer survivors are more likely to have skin cancer (due to radiation treatment), gynaecological cancers and a second round of breast cancer.

Cancer strikes the fear of God into even the strictest agnostic.

And no, that fear is not understandable if you haven’t been there. If enough people ask if you’re afraid, you will become afraid.

But the people I don’t understand are those who fear cancer testing. Mammograms, ultrasounds and smear tests are uncomfortable. There isn’t a woman I know who doesn’t dread a visit to her ob-gyn, but seriously.

Ten minutes of discomfort yearly are a small price to pay to not have to undergo chemo that knocks your body well out of shape. Having to look at your sagging breasts in the mirror once a week may be a sad reminder that we are long past the perky tits of our twenties, but looking at two healthy tits is a whole lot better than having to see one missing.

This is the most important meme in the world and I will keep sharing it forever. These signs and symptoms may come months before you feel that darned lump!

A twentysomething once told me that she was more concerned about the potential side effects of the HPV vaccine than getting cancer. I’ve hardly seen her since I was diagnosed so I think she might be under the impression that it’s contagious. Misinformation kills!

If you have genetic cancer in your family, please make sure you have regular check-ups. Get your genes tested – I know that knowing that you have a disease gene is bloody terrifying, but even if you have one or more of the dreaded genes it doesn’t mean you’ll get cancer. You are predisposed and should have yearly checkups, but it also means that the probability of it being found early on, getting appropriate treatment and becoming cancer-free is much greater than not having the gene, sticking your head in the sand and dying cos you thought “It won’t happen to me”.

I don’t have any cancer genes. My body’s lack of estrogen production should have ensured that I didn’t get an estrophile tumour. Yet I did – shit happens.

Having one or more of the breast cancer genes also means you can get a double mastectomy, get silicone implants, and guess what – no mammary glands, no breast cancer. No uterus, no gynaecological cancers.

And if you do find a lump in your breast – DO NOT GOOGLE! Another dear friend of mine found a lump just before Christmas. I must admit that I have been terrified on her behalf. If I knew a year ago what I have learned about breast cancer over the past year, I would probably have been shitting bricks for myself. Turns out she has the same as me *phew* which was an enormous relief.

There are so many different types of breast cancer, some are more easily treatable than others, and the one I have – though it had an extremely aggressive growth rate – is the one that’s easiest to treat and survive.

Cancer is a fear factory. You will wake up every single goddamned day for the rest of your life wondering “Is this the day I get cancer again?”. It’s up to you to decide how much that fear is going to ru(i)n your life. Not that you can make the fear go away, but if you let it paralyze you, it will.

Then again, you can get hit by a truck tomorrow.

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.

 

When science brain says BOLLOCKS (except it doesn’t)

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I think I’ve said it before. Actually, I know I have, but it can’t be said too often. I have the bestest two sisters in the world and I am most sad that there are massive amounts of water between us. Luckily for me, they always sorta stay near each other.

This arrived in the post today. It’s a ‘fing’ of sugilite, stars, pink and love. It’s a love stone. For me. From my sistah. And I love it! Oh, and yes, it is as heavy and gorgeous as it looks. Very nice purple. My kinda purple. And hers. *squeals with joy*

And science brain is being very quiet (although neuropathic fingers are kinda screaming) cos the truth is, science wouldn’t be of much help if I were alone in this. If I didn’t have a tribe watching my back, keeping me company, keeping me sane, holding my hand, making sure that I am moving forward.

Science ain’t much help if you’re in this fight alone, cos it’s a hard and rocky road and there are precipices all along the really narrow path and it would be so much easier to just give up and give in and admit defeat.

So science brain is being as quiet as a mouse, thinking that I am so grateful to all the people (and cats) out there who keep me on that path and keep me as well and happy as can be, and who make my life worth getting up for even on the days when I would have much rather stayed beneath the covers.

I even have an English rabbit (proper one, not a Derbyshire Rarebit-rabbit) boiling on the stove right now. How’s that for coincidence?