Edie Sedgwig

The one thing that ‘everyone’ knows is that if you get breast cancer, you get chemotherapy that leads to alopecia. If you don’t know anything else about side effects then you do know that. I was never worried about that part of it and thought it would be a fun way to “reboot” my hair!

Shortly after I told my closest friends and family that I had cancer, I got the most amazing purple wig in the post from Kay. I love my darling sister! It was absolutely perfect and really made my day! Purple goddess, that’s me. And I love it! Such an amazing colour and matches my nail varnishes, too.

Lucky are we who live in Norway and have chemotherapy that leads to alopecia. We get a requisition for “headwear and wigs” so that we can cover our bald heads with something nice, without having to pay for it ourselves. I made an appointment to visit Jalvad parykker in Oslo. Great service and we found the perfect wig for me.

Wigsafari with June. First time at Starbucks (OMG I know!!!!!) and fancy new hair. Photo: June Ø.

The fun thing about having had every single hair colour and do possible is that no matter what kind of wig, people are always going to think that this is your real hair because it probably has looked that way at some time or other. This one was nice and short, had a good snug fit and looked good. And I’ve had that hair colour and style on at least one occasion!

Not that I used it much. I rarely used any wigs at home. Far too hot! But at least I learned that wigs are basically all the same size so I could safely order some from overseas.

I went a bit nuts at Rosegal and have a number of wigs from them. I’ve since read several complaints about their web store, but I’ve always received the items I ordered within an “acceptable time period”. I do live in Norway, after all. And I absolutely love my fake hair! It doesn’t even look fake! I know that some women are worried that ‘everyone’s going to see it’s fake’ if they get a synthetic wig, but it’s not like that at all. Just don’t sit too close to an open fire – and don’t open the oven door – and stay well clear of candles.

Cos it’ll, you know, melt.

I used my “proper wig” a few times and then I got Edie. I’ve been a fan of Warhol since forever – after all, without him there would have been no Velvet Underground. I found this silver one and I just had to have it. So this is Edie Sedgwig. If you don’t know who Edie Sedgwick was, you’ve missed out on important cultural history! She was one of Andy’s superstars in the Factory.

Edie was fun. Edie made me feel colourful. Edie gave me OAP ticket prices on the bus. I even got an extra Edie so I can make an even more fluffy version!

The problem with wigs is that you have to wash them, just like ordinary hair. It’s fairly easy – at least for normal people it’s fairly easy. One bowl with shampoo & water – gently wash – leave for 15 minutes. Rinse. Bowl with balsam water. Hang to dry.

The only problem is that when you’re crippled with neuropathy and fatigue, there is no way you are able to stand let alone actually do anything.

I did the only smart thing: changed wigs. Which was great fun!

I got this really nice steering wheel cover from Sverre for my birthday. It’s lovely, nice and warm in this freezing cold winter, in a lovely black and pink floral pattern. And it matches Melanie perfectly! Melanie Martinez appeared on some talent show and sings, and is famous for her two-toned hair.

Personally I prefer Venus the chimera cat. But you already knew that, didn’t you?

Bad hair days are back again

Chemo gives a wide range of side effects, most of which are highly unpleasant and there is nothing on this planet that can make them fun and there is nothing positive in them.

Strike that. All but one are unpleasant and negative. And I’m one of the few people who probably regards even that one as positive.

But for me, alopecia has never been an issue. I have been looking forward to it. It gave me an excuse to chop my long hair off and colour it bright pink, and I doubt if it’s been bleached this often since I was at UKC and changed my hair colour every week or so. I loved that barber shop downtown and with easy access to Directions hair dyes I had a blast!

I bought a whole bunch of wigs in different colours, lengths and styles and have been having fun wearing them all winter. After all, what’s the point of having wigs if you can’t use them? Wearing a wig means never having a bad hair day, after all. And seeing as people are used to my changing colours and hair styles on a regular basis (at least I used to) some haven’t really noticed that they’re wigs!

My hair has started growing back and I am constantly having bad hair days. Not just because I’m a heavy sleeper but it’s winter so I have to wear hats. My scalp has been fuzzy for weeks – not cute kitten kinda soft fuzz, but fortnight old lambs. The hairs have been growing at 1 mm per month rate. But now they’ve gone all anarchistic on me, so some are growing a lot faster.

And I mean a LOT faster.

Some hairs are several inches long whilst most of it is short. I’ve given up hope that my “cancer hair” will be rainbow coloured and there is no glitter in sight. Nor is there any sign of curls.

It’s just grey on grey on grey.

And bad hair days.

And because it’s growing at different rates and I’m having those hot flashes again, I can’t wear my wigs for long periods cos I get all sweaty and itchy (no, the wig doesn’t itch but having sweaty hair that bends different ways itches).

The big question now isn’t whether I will colour my hair again, it’s how long I can stand this grey-on-grey and/or if I get the hair trimmer out first. If I do, it’ll probably grow at the same rate but it will take a long time before I can colour it – but I might grow completely bonkers looking like this.

Manicure = surgical tape and gauze

One side effect of Taxotere is onycholysis – a fancy term for “the painless separation of the nail from the nail bed.” Not everyone does, there are a few things that may (or may not) help. I had great fun using fancy nail polish all the time – I still lost 8 nails on my toes and my finger nails are only just hanging on.

As I’ve been pretty much offline the past four months, most posts will start in the middle – which is why we’re now looking at my nails of today.

They are growing, slowly but surely, and I cannot wait to not have to deal with tape and gauze multiple times. Surgical tape sticks well (which is good cos – finger tips – major useage) which also means that the outer 5 cm of my fingers are permanently sticky.

Try handling small squares of gauze with very sticky fingers. It’s not easy.

Which is another reason I’ve not been writing much. When your fingertips are ten times their normal size, it’s difficult to type!

I am longing for healthy, long nails that don’t hurt when I trim them, and not having to use garden shears because they’re – hard as nails…

 

My silver anniversary was spent offline…

In October I had a silver anniversary.

Internet and I have been connected more or less full time for 25 years.

That’s a long time.

It all started with sb13@ukc.ac.uk, has been through numerous email accounts (including several anons in Finland), a dozen computers/terminals and most OSes. I started my online career with mail, cat, jove, vi, irc, tetris, text-based rpgs and vms.

I’ve agonized over slow modems and trying to get the TCP/IP adjustments correct. Plug and play did not exist in those days. I can remember the very first days of Netscape and playing Doom on the office intranet.

In other words, I was at one time at the peak of technology.

My N95s, from left to right: 2008-14 and is used for charging as the screen is kinda wonky 2014-? is my current phone The last one is for when the current phone dies…

No longer. I am now very happy to have my faithful N95, and although it was first generation smart phones, it now has very limited options: I can make calls, send messages, take awesome pictures, and play on facebook.

That’s it. So what with neuropathy, flatigue, muscular pain, acute tendonitis in both arms, a resting bpm over 120 and loose nails on both fingers and toes, I have been more or less offline since the end of September.

Which is probably the longest time I’ve spent offline even through the early 90s (I was allowed to sneak in to UiOs servers and log on to my anon email accounts).

Apologies to all who have sent me emails or awaited updates here, there are a gazillion blogs coming but they are not pubishable from my N95.

And no, I can’t use a touchscreen thingamajig cos my tendonitis flares up.

Soooo…. I’m afraid you’ll have to stay patient a while longer. My finger nails are threatening to fall off. Sorry.

 

The downward spiral

Day 27 after last chemo.

27 days of complete and utter flatigue and an insane heart rate.

Every time I have made a movement, my body has perceived it as having finished a marathon. My entire body has gone all wobbly, heart rate has sky rocketed, and I’ve collapsed onto the closest chair-like object. Regaining control of my body has generally taken shorter time than decreasing my heart rate to something that can vaguely be called ‘normal’.

Life for the past 27 days has mostly been dragging myself from bed to the sofa, watching ancient reruns of Bones, Friends, NCIS and Master Chef (Junior). It’s also been numerous crappy reality shows (pawn shows, designer competitions etc) and Border Security: Australia’s Front Line which is actually kinda interesting/entertaining.

I can’t say how annoyed I was when I – last Sunday, ie day 20 – remembered that I have the dvd box sets of both Buffy and Angel. Coulda binged on them for three weeks instead of crappy daytime tv. At least I now have something fun to watch, as it doesn’t seem as if this flatigue is leaving anytime soon.

My concern has been my heart. An increased HR after exercise is normal – but this has been as far from normal as can be. I yawned and my HR spiked past 140 and stayed there for ten minutes. My normal HR at the hospital has been ca 65. The good thing is that once it passes 130, you don’t actually need to search for a pulse to check – cos your entire body is pounding with blood so you can sit still, close your eyes and just count. Dead easy.

The tricky part is falling asleep when you can feel your heart beating, hard, rhythmically, wondering if this is ever going to end. After a couple of hours of 120+ one tends to give in and take a sleeping pill. It’s weird how the rhythmical noise in a MRI/CT machine sends me to sleep, but my heart making the same kind of noise doesn’t – maybe because something in me is worried for chronic heart problems?

The irony in my mother dying of heart failure when she was 49 – and me now having massive heart problems at 44 – has not escaped me.

The skin on my feet is disintegrating so I got an electric foot file. I can actually pull off large pieces of 3-4 mm thick skin that has just loosened – I know, sounds disgusting – but between removing dead skin, filing, and lathering in massive amounts of lotion, we’re hopefully soon back to something resembling normal.

At least my nails haven’t loosened yet but my eyes are still running.

Massi is back on the road (yay!) so we had an enjoyable trip to the hospital for my next scheduled chemo. I can drive. It’s just the walking to and from car, getting in and out of car, and all that stuff that sends my ticker into a frenzy. At the moment I have three options for getting to the hospital: drive myself, take public transport (out of the question for my immunocompromised body), or be at the mercy of Pasientreiser. Seeing as the early shift take great pleasure in changing orders and sending out cars an hour early, that is no longer an option.

It was when I could shower & get ready in ten minutes. I now need an hour just for showering. So – we drive. The fact that it’s a good 300 m walk from the car park to the hospital should be interesting. Seeing as I normally can manage 10-15 m before collapsing, this will not only be a marathon for me, it’ll be an ultramarathon.

Speaking of which. Chemo brain has run out of power even if heart is pounding on at 130. I love my fake-life. tbc…

Round 5 – running out of steam

It’s been a week since my last chemo and if it wasn’t so exhausting, I would want to quit.

Cumulative sucks.

Onset of fatigue on the evening of chemo. Flatigue set in good and hard on Wednesday. There was no effect of the corticosteroids (apart from night sweats). Heart palpitations en masse (pulse: 115-130) repeatedly throughout the day. Fungal infection but this time I was ready for it – after 6 days of Nystimex, the worst was over.

For some reason, very light neuropathy (just tingling in my finger tips) which is a relief. Or maybe I’m just so flatigued that I’m not registering any pain? I am certainly not complaining.

There are a couple of blogs in the pipeline – if I can just get enough strength to sit at the computer for more than ten minutes at a time.

But yes, still hanging in there, still enjoying the sun through the window.

Word of the day: cumulative

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).

Breast cancer is a gift for life. And death.

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.

 

The Weeping (Song) blog

I know, I know, I wrote somewhere that I didn’t cry. Much.

Except these last ten days I have been crying almost non-stop.

Not that I’m sad or anything, it’s just that my tear production has increased so I’m sniffling and crying all day. It even has a fancy name: epiphora (which is also a genus of large moths).

Not that I’m complaining. The opposite side effect – dry mucous membranes – is loads worse.

So why did I write this small blog? To post this video, of course. The finest studio ballad they ever did.

Fungi should be in the forest, not my mouth

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.