Author: Siri

I am Samson(a)!

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Not because I have long hair (anymore), but because my pink hair makes me invincible. Dyeing your hair bright pink and making it as noticeable as possible commits.

When I walk down the street, people stare. What they see is a fat, 40-ish woman with bright pink hair looking like she’s trying to be a good luck troll. And because a lot of people lack manners, they stare, as if I’m some sort of one-woman freak show.

Which I am (in a way). What they don’t know, is that their staring just makes me lift my chin that much higher, and straighten my back just a touch more, and if I’m really lucky (for instance, if I’m sitting on a train) someone will phone me and I can tell the person on the other end how my check-up with the oncologist went and about how there are so many rude people staring at me and how goddamn stupid I find them.

That usually makes them turn their head away in shame, or they’ll put on their music, cos people love hearing about other people – just not other people’s cancer.

Sometimes, pink hair initiates conversation with people who are curious (I don’t think for one second that anyone thinks I’m a punk or crazy). And I’ll tell them that this is my breast cancer hair, and we skip the awkward “OHMYGOD I didn’t know, I am so sorry” cos pink hair – you’re not looking for apologies, you’re open to talking about it.

In the past nine weeks, since I first went pink, I’ve had quite a few conversations with strangers – not that I particularly enjoy talking with strangers (I am an introvert, after all) – and they’ve been good conversations. I’ve told them my story, we’ve talked about signs and the importance of knowing your what your own breasts look like by default. We’ve talked about treatment and discovery, and I’ve told them how most tumours can go unnoticed for a year or two – in spite of mammography – because they usually grow so slowly.

And stnading straight and walking tall is good for the body, so I figure my physical therapist will be pleased, too.

And if just one woman manages to spot a tumour early, then it’ll be worth all the glares and stares and rude whispers…

Tumour is now off the charts!

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Quite literally, in fact. I had my third check-up with Dr. R last Thursday. I knew what she was going to tell me, so I think I kinda stole her thunder. here she was, all set to tell me the great news from the MRI (the tumour has collapsed) and I could counter with “you can no longer feel it”.

The tumour isn’t gone, it’s just collapsed. I’ll still be popping pills and having monthly injections until August, there will be surgery in September and radiation to follow, and the surgery will be invasive cos there are a lot of cancerous cells – but the results are exceptional.

Which means that she can no longer check the size of the tumour with her ruler, ie no more charting of physical size at Doc’s office.

 

FightHPV – et mobilspill for alle!

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“Kan et spill bidra til at færre får livmorhalskreft? Bli med på å finne det ut!

Prøv vårt nye mobilspill, og delta i forskningsprosjekt om screening mot livmorhalskreft – og del gjerne denne videoen med venner!

Kreftregisteret har utviklet mobilspillet FightHPV for å øke bevissthet og kunnskap om HPV-smitte og screening.”

Last ned spillet gratis her:
Android: https://play.google.com/store/apps/details…
iOS: https://itunes.apple.com/us/app/fight-hpv/id1091559571

Kreftsjekken har også laget en video om spillet.

Hver dag får en norsk kvinne livmorhalskreft – ikke vær den kvinnen! <3

When cancer isn’t the worst possible diagnosis

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I had my second appointment with my new physical therapist (LB) yesterday. The first time I went to see her, she asked about my medical records. When I started telling her about all the tests I’ve had over the years, and all the different specialists I’ve been to see, and the mountains of paperwork now acquired, she agreed that it was easier that I just tell her. And as I have a gazillion test results and know quite well what they have (and haven’t found), she could start on the physical examination yesterday.

Good news: I’m still really flexible (she was quite impressed). She even laughed when I made my default joke – that I would be more flexible if all the stupid fat wasn’t in the way – and she agrees that the f*ckwit endocrinologist I went to who claimed that gaining 40 kg in 5 years is normal was an *sshole. She’s also rather impressed that my muscles are as pliable as they are and agrees that if they hadn’t been, I would probably have been in a lot more pain.

Ever since my backpain started, I’ve tested quite a lot of treatments. I’ve had physical therapy (of various sorts), I’ve done belly-dancing, yoga, pilates, hot water exercise, walked for miles in the forest, worked out in the gym. I’ve tried easy workouts and brutal ones. I’ve tried ignoring the pain and working through it. I’ve tested all sorts of drugs – anti-inflammatory (ketaprofen, celecoxib, diclofenac with sodium and potassium, naproxen), analgetics (paracetamol, phenazone, ibruprofen) and opiates (codeine).

I’m open for treatment suggestions if anyone knows of anything I haven’t yet tried.

I had a great neurologist who (after a dozen various tests) ended up with “unspecified myalgia” as official diagnosis, “There seems to be a chronic inflammation in your lumbar region but I have no idea what causes it nor how to treat it” as the unofficial. There were a lot of test results but none of them gave a clear diagnosis. My mitochondria have stopped working properly, I have fatty deposits where there aren’t supposed to be any, and I have muscular dystrophy.

Six years on, I’ve still not found any treatment that alleviates my back pain. I can go for a walk in the forest but that’s it. If I do anything during this walk (ie pick mushrooms or berries, get on my knees to take macro shots of interesting plants or insects) it triggers the inflammation. If I take any drugs, best case there’s no effect, worst case my pain flares up.

There have been a number of signs that my body is worn out from heavy physical work over many years. Torn rotator cuff, chronic latent shin splints, jumper’s knee and tendonitis in both arms, and this sudden switch from fully functioning muscles to mitochondrial disorders and dystrophy. The additional inflammations and uncharacteristic pain when I had the double neck prolapse last year. And yes, the bod stopped functioning overnight, when one day of visiting a number of galleries and exhibitions in London left me in so much pain I was unable to walk after sitting down.

Back to LB. After examining me thoroughly, she gave me the news no-one really wants. The most probable cause of my back pain is that my lumbar column is worn out. The good(-ish) news is that I now have a couple of pretty clear diagnoses to hunt – facet syndrome/facet joint problems, lumbar spine osteoarthritis, sacroiliac joint dysfunction, lumbar spinal stenosis – the bad news is that regardless of diagnosis, my back is f*cked. There are no good treatment options. Between skeletal and muscular issues, I will never have a functioning body again.

I also explained that my neck/shoulder/headache issues aren’t something she needs worry about. I explained how the main problem is that my neck stiffens if I don’t get a good night’s sleep, which causes pain travelling down into my shoulders and up into my head. She seems to agree with this and we decided that unless I get another prolapse we won’t bother too much. I already have the tools and know what to (not) do.

Our goal has therefore become finding tools for me to prevent triggering lower back pain flares and/or manage to deal with them (at the moment, my only option when they flare up is to lie down). I’ll have to make an appointment with my GP so we can start applying for full disability.

 

A new diagnosis in an old body

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My body has been non-functioning for 6 1/2 years now. Still searching for a Norwegian Dr. House. However – the cancer is not to blame for my aches and pains. Even though the tumour is estrophile and I suspect that my hormonal imbalances are a part of my disabilities, the connection ends there.

I did not have cancer in October. I had ridiculously low levels of oestrogen last summer (before I started any kind of treatment, my levels had increased 12-fold…). When I detected the tumour, it was probably a week old. This is probably the reason that it suddenly grew very fast – both in size and density – and why it’s decreased in both just as rapidly.

Tomorrow I’m scheduled for a new MRI. I am rather excited because the tumour seems to have decreased to the same density as my tumour-free breast. So I either have tumours in both now, or we’re talking a truly amazing reaction to the treatment.

No worries – the probability of the former is near-zero.

But no – the cancer is not to blame for my aches and pains and when I’m done with the treatment, I’ll still have a crappy body.

Don’t just make a statement – be one!

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Even if you don’t know me personally, if you’re over 18, I bet you know at least one person who has (had) breast cancer. One in ten women will get it at some point (and a handful of men). This means that if you have 100 female friends on facebook, 10 of them will probably get breast cancer at some point. It’s the most common type of cancer in women (accounting for almost 25 %), is largely due to bad luck (or bad genes) rather than choice of living, and the treatment regime (in Norway at least) makes you eligible for sick leave for 12-24 months.

Of those 10 facebook friends of yours, I bet that one will tell the world, two will let their facebook friends know but write as little as possible, one might be an attention whore (OMG I have an appointment at the hospital tomorrow and I am really scared but please don’t ask me why), two will let you know after they’ve survived the treatments and are getting back to a semblance of normalcy, two won’t tell you at all and two will desperately try to hide the fact that they have (had) breast cancer.

Unfortunately, breast cancer is a bit like a boob job. It’s difficult to hide the hair loss that comes with traditional treatments (ie chemo) and most women get “cancer hair” after they’ve finished the treatments. In most cases the chemo leads to weight loss and a sad complexion. Wigs are a great substitute for hair loss, but in most cases – the wig itself is more obtrusive than really short hair.

When I first got the diagnosis, I decided to shave it all off before summer, get the scalp used to some sun. If I was going to lose it all I decided it was better to be the one making the decisions rather than wait for it all to fall off. I’d made a deal with a friend that she was to shave/cut it and make extensions of my hair – why waste it? – but as I realised that I wouldn’t be losing it, I needed a good reason to get rid of it all. After a week of waking up drenched in sweat and feeling that my hair was greasy and yucky from the night sweats, I had my reason.

I’ve done just about everything to my hair – had it short, long, permed, bleached, highlights, dreads, a mohawk, and just about every colour there is (even fluorescent and silver) – just never pink. And since pink is the breast cancer colour, there was no excuse not to go there.

The response has been quite interesting. People I know think it’s really awesome (or at least they pretend to). Strangers I strike up conversations with are inquisitive and when I explain, they think it is brilliant. Some jerks just stare rudely – I stare back – and if possible, I just say “This is my breast cancer hair, do you have a problem with it?” at which they look rather embarassed.

Apparently, 40-somethings aren’t supposed to have bright pink hair.

So for all the women (and men) out there who seem to be ashamed of having breast cancer – this one’s for you.

Oh. Colour is Directions Flamingo Pink. It fades rapidly even if you don’t wash it – so if you want to be bright and colourful for a special event, dye it the same day! And use gloves!

The side effects of side effects

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Yesterday, I had my second check-up after starting on my meds. I’m on my third Zoladex, have gobbled 57 Tamoxifen as well a numerous amount of Paracet, Imovane, Xylimelt, Dentipro and Xerodent. Side effects are seemingly stable and the tumour has not only decreased in size (it’s now 7 cm * 6,5 cm) but the loss in density has amazed even my oncologist.

The stronger the medication, the greater the risk of annoying side effects. I should be relieved that mine are as mild as they are. That being said, mine are pretty annoying, expensive and make my body even less co-operative than normal.

Hot flashes – boy, am I getting them, and mostly when I don’t need them. They tend to be worst when I’m sleeping and most nights I wake up at least once covered in sweat as if I’d just had a really bad nightmare. I’ve started taking the Tamoxifen at 11 am rather than 9 pm to see if that will help. I hope so. My grouchy back needs sleep to function (as well as it can) and these rapid wake-ups don’t do any good.

Worse than waking up in sweats is not being able to fall sleep. I can lie awake for hours, yawning till tears start running, dead tired, but I just can’t sleep. My onco was very clear from the start – take the pills you need to alleviate the side effects you experience – you don’t need more hassle than you already have! And I do occasionally have sleep problems, so I have Imovane to help me fall asleep.

The main problem with Imovane is that my sleep is not high in quality and I feel sluggish and off-beat the following day. So, I can choose between not enough sleep or crappy sleep – both giving me a really bad next day. An average “sleep disturbance cycle” for me is two- four nights of lying awake for 2-4 hours before falling asleep. In those cases, I only need one (in bad cases, two) nights with Imovane and I’m back to falling asleep rapidly. But this time – I’m now on my third week of sleep problems. I got a different prescription from my onco – Stilnoct –  hopfully they will do the job.

I’m used to having headaches from time to time, but the ones I’ve had now have been pressure headaches that spread down into my neck – rendering me pretty useless and grumpy. Luckily they don’t occur every day, and get better after five cups of coffee and a Paracet, but if they manage to sneak down into my neck my whole back goes ka-boom. Ruins my entire day.

Dryness of mouth – that’s an interesting one. Doubly problematic because the lack of saliva is really bad for my periodontitis so I have to be extra careful. I was recommended Xylimelt and Xerodent. Xylimelt has a long-term effect. You stick it on your gums and it lasts for about 2-5 hours. I was sceptical at first but it’s easy to get used to, works quite well, and doesn’t disappear down your throat whilst sleeping.

The problem with most saliva-stimulants is that they are also great laxatives. Xerodent is a complete and utter waste of money. The (weak) effect lasts as long as the lozenge – approximately 5 minutes – and if you take more than six, you need to stay close to a bathroom. However, Dentipro (generic brand from Swedish pharmacy Apoteket) is amazing. They have a strawberry-flavoured jellies that taste delicious, have a longer-lasting saliva-stimulating effect but aren’t laxatives!

All in all, not a bad bunch of side effects (and I haven’t even said a word about how amazing it is that my period is gone) – but they’re all rather expensive!!! (that was my complaint of the day).

A deflated, shrivelled balloon

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1

It’s a week since I got my first zoladex implant and I’ve now taken seven tamiprofen (at precisely 9 pm – I’ve set an alarm on my phone).

I’ve been wondering when the side effects will set in – I am expecting to experience every possible side effect and then some.

Somewhere in my mind, I’ve decided that my body being as weird and wonky it is, I should expect side effects before effects.

Yesterday I was showering and I realised that my tit no longer looks nice, firm and plump. One dimple has turned into many dents. I figured this might be my imagination working overtime.

This morning, I can no longer pretend. My right tit now looks like a shrivelling balloon. Not only has it shrivelled, the tumour seems to have decreased in both size and density. I’m due for a new deep biopsy on the 13th so it will be exciting to see if the tumour will deflate as rapidly as it grew and what the biopsy, blood work and imaging will show.

Pills and thrills and medical bills (or not)

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As all my test results were optimal and perfect, I was placed in Treatment Arm A where the main focus is killing off hormone production. The plan is that I get Zoladex, Tamoxifen, and if those two don’t give the expected results Ibrance will be added. Deep biopsies and blood work will be done at regular intervals to check that the meds are working.

It’s all very medical and I am learning (reading) loads of new words. I’m glad I have a solid background in microbiology and chemistry, because I do sometimes find words I recognise and can relate to!

Due to my tumour being estrophile the treatment regime targets both my hormone production and the tumour’s ability to feed off existing hormones. Zoladex is a long-acting depot injection that I will receive every 28 days and it’s in charge of reducing hormone production. Tamoxifen is a pill that I take once daily and it targets the tumour cells’ ability to utilize estrogen. After two weeks I am scheduled to have a new deep biopsy, to check the effects (if any) on the tumour cells. One of the results that will decide future treatment is the KI-67 antigen. If the current meds are sufficient, my KI-67 levels should have halved – but as mine are at 7.5% (“normal” level for estrophile breast cancer patients is 30%) it is highly doubtful this has happened, in which case I will also start taking Ibrance, which is a CDK-inhibitor, and its role is “preventing overproliferation of cancer cells”.

I like Wikipedia because it explains difficult medical stuff as simply as possible, which basically means I know most of the words and recognize some biological pathways from biochemistry! But as the authors formulate descriptions much better than I ever will, here’s their explanation of the drugs involved:

Ibrance/palbociclib is a selective inhibitor of the cyclin-dependent kinasesCDK4 and CDK6 (enzyme inhibitor).

Zoladex/goserelin acetate, is a drug used to suppress production of the sex hormones (testosterone and estrogen), particularly in the treatment of breast and prostate cancer.

Tamoxifen itself is a prodrug, having relatively little affinity for its target protein, the estrogen receptor (ER).

Unlike Ibrance, Tamoxifen and Zoladex have been used for many years and there are comprehensive lists of potential side effects of both.

The most commonly reported adverse reactions with ZOLADEX in breast cancer clinical trials were hot flashes (70%), decreased libido (47.7%), tumor flare (23%), nausea (11%), edema (5%), and malaise/fatigue/lethargy (5%). Injection site reactions were reported in less than 1% of patients.

Commonly reported side effects of tamoxifen include: amenorrhea, fluid retention, hot flash, nausea, vaginal discharge, vaginal hemorrhage, weight loss, and skin changes. Other side effects include: infection, sepsis, alopecia, constipation, cough, diarrhea, edema, increased serum aspartate aminotransferase, menstrual disease, oligomenorrhea, ostealgia, vomiting, and weight gain (these may or may not appear until years after treatment)

Ibrance, on the other hand, got an accelerated approval by the FDA on February 2nd, 2015. According to TV2, “In 2015, a study of cancer drug palbociclib (Ibrance) was stopped because the results were so good that it was not prudent to continue and give some of the study participants placebo medicine”. Ibrance was approved by Norwegian health authorities on November 9th, 2016.

Common side effects of Ibrance include: decreased neutrophils. Other side effects include: infection and pulmonary embolism.

Looks a bit too good to be true – the complete list is slightly longer.

Today is day 5 and I am still awaiting the onset of side effects. I was actually hoping the hot flashes would appear instantaneously, as it’s been pretty cold the last week. Not that I’m complaining, not the slightest bit! But with my oh-so-weird body, a thought that sometimes circulates is are the meds actually working since I’m not experiencing side effects? And I know that they most probably are, and I should count myself lucky that there are no side effects yet and that they will set in at some point and I will be cursing old-me who wanted them… weird mind, I know.

And in case you’re wondering about the financial pros of this study:
I get the drugs and tests for free (I just have to pay for getting the stitches removed). I don’t get paid to participate. I am doing this of my own free will because I want to contribute.

How to impress your doctors

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Cancer research is (in my view) one of the most important research areas in medicine and there are always numerous ongoing medical studies. Since I couldn’t be a researcher, I decided (even before my GP sent the referral) that I wanted to contribute to such a study if possible. All successful cancer treatments have at one time been a medical study and I wished to contribute to those who will get the diagnosis in the future.

On January 1st, 2015, a new packet stream for breast cancer patients was implemented in Norway. If a tumourish suspect mass is found, the patient is to be diagnosed within two weeks of referral and a treatment schedule is to be determined within the next week and treatment is to begin within 4 weeks of referral.

Human medical testing is strictly regulated in Norway. A patient is to undergo much testing and is not to be in danger of inferior treatment, which means that as a wannabe guinea pig, I knew that if there were any studies I would part of I would still be getting high quality treatment – as well as a more rigorous testing regime.

January 16th

Appointment with GP. I have to say, my GP is the best in the world and totally perfect for me. Without him I would have given up my “hunt for medical answers” a long time ago. He told me about the packet stream, sent a referral, told me to call the hospital in the morning and then we had a good laugh. Actually, we had several. He’s been my GP for so long, through so many weird symptoms, that he knows that this is just another bump in the road for me.

January 20th

Mammogram, ultrasound and needle biopsy at Ahus. I’ve had a lot of tests done at Ahus earlier, including two muscle biopsies in my shoulder. I’m also quite certain that most patients start off with a “You can tell me anything, I can handle bad news” when in reality they’re not ready for it.

But being me means chitchatting with the medical staff and how else to build trust than to talk about all the testing I’ve been through at Ahus. The doctor warned me that the biopsy would hurt, I pointed to my shoulder and replied that I’d had two and I did not expect one tiny needle to hurt in the least. I also told them about how I, at my second biopsy, was the model patient and had also explained to the surgeon and the doctor students why I was so relaxed about the procedure (they were worried I’d passed out because I was so relaxed).

So he told me that the tumour was 4 cm and that I would probably need radiation and surgery. My rebuttal was “OMG what about chemo? I want chemo!!!”. He was a bit surprised by that outburst, but as I had explained why I’d had so much testing done, he was quite understanding of my situation and said that treatment plans were up to the doctors and I would just have to wait and see.

The best news was that he couldn’t find anything in the lymph nodes, meaning no metastases (yet). I wasn’t surprised seeing as this tumour is so fresh and it normally takes some time for it to extend to the lymphal system.

January 30th

Breast MRI, new ultrasound and needle biopsy. The breast MRI was weird. I’ve had quite a few MRIs and they’ve all been pretty much the same: lie in a tunnel, be happy you’re not claustrophobic, close your eyes and sleep. Or at least marvel at the noises. This one – there were some weird vibrations, a bit like electrical pulses, not uncomfortable just – weird.

By this time the mass seemed to have doubled in size. As there had been some problems with the first lymph biopsy they wanted a new one, and as it was the same (excellent) doctor as the first time, I told him that it was much, much larger, so he did an extra ultrasound. A long ultrasound.

This time his lips were sealed in regards to the size. I didn’t push.

January 31st

Appointment with doctor at the breast clinic. My first meeting with a doctor! I think that the patients of the Breast Clinic at Ahus are allocated the most resources. I have as yet to meet someone I didn’t like at Ahus (which says a lot about their staff) but everyone there was super sweet in their bright pink jackets. I was introduced to my co-ordinator and “my” nurse and given lots of phone numbers in case I needed or wanted to talk to someone.

The doctor was also very nice and sweet and explained a lot (and omitted some information, she wouldn’t talk about the size either). We talked about cancer history in my family (none). She did an exam and pointed to my numerous spider veins on my bosom, counted 24, and said that they (unilateral naevoid telangiectasia) were typical of massive estrogen excess. As I’d already deducted that this tumour had to be hormonal, she told me that this was most probably an estrophile tumour and there was a research project (whereupon I immediately told her I was interested) where the treatment was based on shutting down hormone production and thereby starving the tumour.

I told her that I was planning to ask if there were any medical studies I could be a part of, and explained that I was interested for two reasons: curiosity – being a science project is almost as fun as being a scientist – and that I feel indebted to all who have been guinea pigs before me and that this is my way of ‘giving back’. I also told her that I’ve already donated my body to science (when I die).

She did say the magic words “chemo, surgery and radiation” at which I cheered, she said the tumour was > 5 cm and therefore they automatically do a mastectomy so I asked if they could make it a double at which she told me I’d have to ask the surgeon!

February 2nd

CT organs. Every cancer patient is checked for metastatis (ie spread from main organ to other organs). Metastasis in breast cancer patients usually starts in the lymph nodes (mine were clean) but to rule out the breast tumour originating from someplace else, other examinations are performed. One of them is a CT abdomen to check the organs. This was done at my local hospital. Not saying that they are inferior, but they do far less needle work and therefore are not as gentle as at Ahus. When the nurse warns “You will feel a slight pinch” brace yourself cos it’s not slight and they usually go on a fishing expedition in my veins with the cannula.

The nurse was also quite grouchy because there had been a breakdown in communications so I met at 8 am with a full bladder, only to be told that I was supposed to have come there at 9 and then start drinking a litre of water. Miscommunication is not my problem, nurse, and being bitchy about it won’t resolve anything. Maybe that’s why she jabbed me.

The only reason I mention her is that she’s the only nasty person I have met to this day. All others have been nothing but nice, kind, gentle and sympathetic. Regardless of reason for the examination, and how crap your morning was, as a patient, I expect that one should always be treated with courtesy and respect by medical staff.

February 3rd

Friday was a stressful day. I also have marginal periodontitis (in prior years, I was an avid collector of stupid, horrible diagnoses that have no cure, need loads of treatment every single day and still give me horrible outbreaks; including herpes simplex/cold sores, prurigo nodularis, chronic latent shin splints/medial tibial stress syndrome (MTSS) and jumper’s knee/patellar tendinopathy in both legs).

My coordinator called and told me I would probably be starting chemo on Monday. I spoke with my periodontitis clinic as my perio surgeon was quite clear that I needed to see my hygienist at least twice before commencing chemo and they could fit me in Monday 2 pm, after an already long day at the hospital and before chemo – I was dreading Monday…

February 6th

Skeletal scintigraphy (bone scan), appointment with oncologist, dental hygienist, and possible start of chemotherapy. Having played around with scientific gadgets for some time I was thrilled to hear I had a date with a sparkly new toy! Sparkly and new for me. Actually, I was almost sparkly, as it uses Technetium-99 to check for skeletal metastases.

As the first set of blood work was at 7:30 and with the possibility that I was starting chemo in the afternoon, I had spent the night at a friend’s place and she was my support person (SP). Which was good, sometimes one needs someone to make you guffaw with laughter over nothings.

The radiology waiting area had some weird wall poetry (random words in short sentences that make no sense, scribbled on walls, but I think it’s a hip thing) and gossip magazines (SP and I had discovered that we have no knowledge of current Norwegian celebrities and looked forward to doing som reading/research).

It was a bit disappointing, really. Getting the Tc-99 didn’t make me feel more sparkly, I didn’t glow in the dark, and we realised that we didn’t recognise a single non-Royal celebrity in the mags.

But we did have an awesome time with the oncologist. She is absolutely amazing and I am so lucky to have her as my specialist! We had some small talk (how was I feeling, did I have any questions, had my breasts always been so lop-sided, all my tests were perfect) and then she said “We have this study that you might be eligible for…” “I know! I want in! Where do I sign?”. She looked slightly surprised, found a stack of papers, explained that I could take them home and read them and then decide whereupon I grabbed a pen, leafed to the last page without even reading the title on the first, and signed.

You can’t do two things at once, so it was good I had my SP who could watch the doc’s expression which apparently was priceless. Too bad I missed out on that one. I’d already made up my mind so why wait? I’ve always wanted to do something like that! Signing that document also meant no chemo yet, instead an extended biopsy of the tumour cells was necessary to decide which treatment arm I was to be administered.

February 9th

Deep biopsy is similar to a muscle biopsy in that large chunks of flesh are cut out of your body and used for various tests. “Large” being a relative term, but cubes of approximately 5 mm are cut out and examined closely. The surgeon was very nice, telling me how I was the “talk of the town” (town being the interdisciplinary board in charge of the PETREMAC study at Ahus. They like my feisty, positive attitude, they certainly aren’t used to anyone being truly positive to a cancer diagnosis (one of the nurses even expressed her surprise and said that she’d never heard anyone be happy about it before) and have high hopes for me. Which is good, because that is what I was aiming for.

Warning! If you don’t want to read details about the surgery, please skip the next paragraph.

The biopsy itself reminded me slightly of the muscle biopsy, but instead of feeling as if someone was trying to stir something solid inside my shoulder, I could feel snips where the surgeon cut out pieces of the tumour. I was glad the nurse had recommended I take 1 gram paracetamol before the surgery… as I lay on the table, trying not to talk while she was cutting, I thought of all the leaves, stems, roots and other materials I have dissected fungal and bacterial tissue from to cultivate in labs. My mind wandered on to one of Tor Åge Bringsværd‘s earlier short stories, En hjertesak, and then ended at Animal Farm. As always, I am impressed by the way the mind finds context in the oddest places.

The surgeon said she would try to make the scar as small as possible. I replied that my modelling days were long gone and managed to keep a straight face long enough for her to wonder if I seriously meant it. Then I laughed, and told her that it was very sweet but since I was having a mastectomy it didn’t really matter that much and besides, I already have visible scars so I wasn’t too worried. She laughed with me at that. She also told me that the tumour was 8 cm, not exactly a surprise to me.

The samples were sent to Haukeland sykehus in Bergen, where the head of the study is seated, and the results could take up to three weeks to process. I’m a patient person when I have to be. Knowing that the doctors weren’t stressed about me getting meds asap makes me confident that I can safely wait three weeks.

Feb 22nd

As part of the study, I get to take a gazillion extra tests to make sure they have plenty of medical information to compare before and after. One of these is a myocardial perfusion scan so I got to be radioactive again! Two doses this time. As I didn’t have my SP with me, I was hoping to find some kind of gossip magazine to try to get up to date but they’d all disappeared. Instead, I found a really sweet, completely non-PC book from 1984 where it was obvious that the authors had a cat that got pregnant and decided to take loads of photos and make a book. You’d never get such a book published today, it was all about letting the cat run free and have it with numerous back alley cats, they praised the kitten who caught a mouse and looked forward to the next litter…

The scan itself was rather boring (no fancy noises) but when I turned on my phone when I was done, I realised that one of the study nurses had phoned me. And what great news! They had received the biopsy results and I was all set for treatment arm A. Could I come in the following day for EKG, blood work, meds, shots, talks with medical staff and such?

Wow. Game on. Show time.