breast cancer

Chemo brain status, 2023

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I’ve long since lost count of which year I got cancer and it doesn’t really matter one bit.

This might get long so you really need to listen to Host because I am madly, totally, completely, lovingly hung up on that album. I even did a review of “IX” cos I started writing reviews for puls.no at some point. Host is Nick Holmes and Greg Mackintosh from Paradise Lost and you should really check them out. “Draconian Times” has been stuck in my car for months and months but that’s not what I was going to write about.

Digressions are good.

One of the very last things I did before I decided cancer was a smart move, was participate in a medical study about “Biological predictors in memory” which was SO much fun. We’re talking mere days prior to finding the tumour. Day one was doing easy exercises in an MR machine, basically looking at loads of clip art drawings, part one was answering “Can you eat it?” or “Can you lift it?” and part two was “Have you seen this image before? Do you remember what you were asked if you could do? Were you asked if you could eat or lift it?”

Day two was loads of different tasks. Remembering series of numbers. Repeating them backwards. Remembering loads of items in two different lists, than classifying them and repeating them several times. Weird word pairs to remember. Complex drawing. That kinda stuff. Weight measurements (I think I was a whopping 132 kg then).  

Since then chemo brain has been a massive part of my life but some of the fog has lifted slightly so when I was invited to do a follow up, I jumped at the chance! I figured that my brain is functioning ever so slightly more but this would be a good opportunity to see which parts are still completely non-functioning.

MR was a blast. Full score (except I pushed the wrong button a couple times, but I did that last time, too). Day two: 88 kgs (that’s 44 kgs down). Bp 129/82 which is still really good.

Darn! That’s a third of what I weighed at the time!

Remembering numbers: kindaish, but five digits backwards nope. Long list of different items: first try was a bust, second try slightly better, third try even better, so it seems if I push I can find long lost albeit very fresh memories.

Still not functioning at all: memorising weird word pairs from a screen. I was presented with 36 word pairs (concert fur), was given a piece of paper with one of the words and was supposed to remember the second one. Ladifknhootidah. First round I remembered one pair. Second round, three. Had to draw a complex drawing (I can’t draw for shit) which was fair enough when I had the thingy to look at. Fifteen minutes later, “Please draw it from memory” yup nope, that’s not happening. I got most of the main form and then my mind was blank.

Mimi is really sweet, she’s from Canterbury and she’s going to be massive one day. Remember, you read about it here first!

Anyways. Conclusion from this medical study (and hopefully they’ll let me participate in three years’ time for another follow-up) is that I do well with images. There’s nothing wrong with my eyes or my perception of images. If I saw the image a second time, I always remembered what I’d answered.

Hand-eye coordination when drawing a mirrored image – as expected. Quite normal.

Doing computer games where the object was to remember if the image you were presented with was the same as one you had seen previously, either the last, second last or third last one. That worked, too! Most of the time. I think my “score” was about the same as last time.

Remembering a list of items that I heard – decent. Improved when I heard the list a second time and even better the third time. 

Managing to remember words I read – that’s a big, fat zilch. And I kinda knew that. Reading is still pretty hopeless most days. Good for me is that I don’t need to read and remember to proof read scientific articles and I don’t need to be able to read to write articles!

Conclusion: don’t give me books and expect me to read them. I love looking at the pictures, though!

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.

 

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.

Tits and wot? Giggles??? Cancer and laughs?

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If I had found that lump a few years ago, I would probably have still been waiting for my first mammogram and probably be freaking out right now, size and speed of increase considering. Instead I am amongst those lucky enough to be diagnosed with breast cancer in Norway, and therefore sent on the fast track of diagnosis, treatment and recovery.

December 21st, 2016 – the first sign

Whilst washing my hair in the shower, I bend over to rinse out the shampoo and notice a dimple in my right breast. It disappears as I stand up. Bending over, it’s quite visible. I didn’t know then that this is one of the first signs of breast cancer, just figured that it was weird, out of place, and that something was off. There are a number of different early warning signals that everyone (man or woman) should be aware of. In my case it started with a dimple and a slight asymmetry (the right breast was suddenly less droopy). I checked carefully for any kind of lump.

Not knowing what such a ‘lump’ feels like – when in doubt, compare your breasts. We have loads of glands around the nipple, but they should feel kinda symmetrical. My lump started off as a largeish mass and has only recently become a solid lump.

December 28th – so that’s what a lump feels like

Your mind will play tricks on you.

I first felt what I suspected was a lump a week after that first dimple. Not being sure of anything and realising the power of the mind, I still wasn’t certain. I did notice that my breasts were now visibly asymmetrical – the right one was regaining its firmness and posture. Not a good sign. If I had been in doubt, those thoughts were completely gone, and I knew exactly what it was.

The New Year 2017 – a time for reflection

I also decided to not call my GP in hysterics. I needed to figure out some stuff first. Mostly, how did I feel about this? A cancer diagnosis, chemo, radiation and most probably a mastectomy, how did I really feel about it all?

And I decided that this tumour was probably the best thing that could have happened to me.

I’ve been on partial disability for some years now. My contract was up for renewal on February 2nd and as I’d already been given an extra year, I was more than likely not going to get another renewal. However a cancer diagnosis would change all that and make a renewal more a formality than a major issue.

My body has been at war with me for the past 6 years. I am getting “better” in baby steps (meaning it will probably be fully functioning by 2525). It hasn’t been my body for many years. My body was muscular, strong, hard working, and could keep on going forever – never tiring, never in pain. This new one is fat with muscular pain, joints that sometimes malfunctioned, a back that could carry no weight and the complete opposite of my body. I didn’t need much thinking to know that a (double) mastectomy wouldn’t really bother me in the slightest. Not my body, not my problem.

Chemotherapy and radiation. They’re often made out to be the “bad guys”, bad for your health, leading to other medical issues. And although minor doses of radiation aren’t harmful, the kind that is used on cancer patients is harmful – otherwise it wouldn’t kill of cancerous cells.

But chemo – that’s quite a different matter. It’s been used as an experimental drug on patients with diagnoses such as CFS/ME and MS – with good results. As my symptoms don’t fit any known diagnosis and probably never will, I figured that chemo might just as well kill off the culprits who’ve hijacked my body.

And last but not least – seeing as I have no history of cancer on either side of the family, it was bound to be hormonal. My hormones have always given me hell, but in the last 8-9 years they’ve been worse than ever (and I do keep coming back to them as one of the main culprits). As cancer therapy against a hormone-induced tumour would necessitate killing off all pesky hormones involved, it seemed probable that it would also take care of some of the other pesky hormones, too.

All in all, it’s a win-win for me.

But laughter? And cancer?

I’ve never been one to lie down and cry when life hits me in the back of a head with a sharp shovel. It’s not as if I haven’t been through crap before. And every time I  ask myself: Is this the time I give up? Is this that infamous straw? Will it ever get any easier?

Then I think about all my reasons for not dying and know that the answer is, and will always be, a no-no-maybe.

So I’ve been laughing and smiling even if I have this huge secret, because I needed to own this before I could share it. I needed to have complete control and know that this is what I’ll be doing this year and know that I am ok with it. Last year it was a double neck prolapse, bronchitis and pneumonia. This year it’s cancer. This year will probably be a lot less painful and loads more fun.

And the reason I know this, is that I have a secret weapon. I have the most amazing tribe. Losing is not an issue. Giving up is not an issue. Being someone other than myself is not an issue, as they know who I am and what a hopelessly weird case of the human race that I am and they still love me.

Onwards we march – together we will overcome!

Who am I?

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I am Siri.

I am 44, engaged, and am the willing slave of several cats.

I live in a Little house on the prairie in Norway (it used to be Little house in the big woods, then the trees were felled).

In the end of December 2016 I noticed a dent in one of my breasts whilst showering. There was no lump at the time, but it appeared within a week – and it grew very quickly. I knew what it was yet my first reaction was relief and joy.

Two weeks after I found that lump, I had a mammogram, ultrasound and biopsy. The technician, a very competent doctor, told me it was 4 cm and that I would have surgery and radiation. My first reaction was “No! I want chemo!!!”.

January 30th, ten days later, I had a new ultrasound and the tumour had doubled in size. The doc didn’t want to say anything about the size (he didn’t have to).

The next day I had my first app’t with a breast doc. She said “It’s now over 5 cm, so we will have to do a mastectomy” and my response was “Could you please make it a double?”.

I have breast cancer. I have an aggressive, rapidly-growing tumour, and I am still delighted. I am happy. I feel blessed. This is such great news for me!

You’re probably thinking that I must be out of my mind to be happy for this diagnosis. 20% of those who receive the diagnosis will die of it. 30% of those who have my kind of breast cancer will relapse within 5 years. In 2015, 3,415 women and 24 men got the diagnosis and 669 people died from breast cancer in Norway (these include all breast cancer related deaths).

So why the joy?

For the last 6 years I have been fighting an invisible enemy, one that has taken over my body. Before that, I could easily walk for miles without getting tired, I could work a long day in the forest with my chain saw, I could carry 40 kg sacks of animal feed without problems.

And one day, practically overnight, my body stopped working. My hips, thighs, lumbar, back, shoulders and arms hurt at the slightest hint of use. I gained 40 kg in 5 years even with a healthy diet and physical work. I experienced a great deal of cognitive issues, including severe headaches, loss of short-term memory and concentration.

I am sad that my body has been fighting my soul for so many years that a diagnosis with horrendous treatment gives me joy. I am furious at my body for giving me so much hardship and hell over the last 6 years that I greet a potentially deadly diagnosis as a much welcomed and sorely missed friend. I am sorry that I look forward to chemo and all the other medicines I will be receiving, in the vain hope that they will fight off other problems as well.

I know that even if I am joyful and happy and glad and excited right now, the fight I have ahead of me will be gruelling and tough physically and mentally. I am lucky enough to have the best tribe supporting me through it all and (probably) the best cancer treatment in the world with the best team of doctors, nurses and engineers helping me through it all.

This isn’t my story. This is our journey. I hope you will walk with us!