To strive, to seek, to find, and not to yield

It‘s been a stormy few weeks. I had my scheduled check-up and I was fully prepared to do another „everything‘s all good, here‘s a picture of my hair“ post here. Only this time, we were looking at some dodgy stuff.

One of my lymphnodes was acting up, and while that can happen when you‘ve been ill, vaccinated, had an infection of whatever, what was dodgy about it was the following;

1. it was the sentinel node by my breast

2. it was over 2 cm

3. it was onesided (only left)

4. I haven‘t been ill since early december.

So, the odyssee started again; ultrasound 1, mamography, ultrasound 2, bloodwork. (between all of these 5-7 workdays of waiting). Then those words „ah yeah well we don‘t really know what caused it but you‘ll be fine, see you in a few months“.

We’ve been down that road before, so… Cue me getting a second opinion. I am in a sentinel lymphnode clinical trial, so I contacted them and they agreed it sounded dodgy and wanted to check it for themselves.

That was today. They checked (more thoroughly??) and discovered it was actually not one-sided, my rightside lymphnodes are enlarged too, which speaks for infection, and that the structure and colouring of the nodes looked healthy. They still don‘t know what caused them to suddenly inflate, but at least they ruled out metastatis/tumor cells. Apparently your ‚nodes can be lowkey fighting all sorts of stuff (germs from a pinprick, hangnail, dust in your eyes) when you don‘t even get any symptoms. In short, this could have been anything, but we had to make sure it was not THAT.

It sounds simple enough when I write it down like this, but it was 4 weeks of my brain at 3 am going from „I‘m sure it‘ll be fine“ to „I should make a mixtape for my funeral“. So. Good times.

Also, here‘s a picture of the hair I shall now get to keep a little longer…

It‘s been a while since I wrote an update. In a way that‘s a good sign? Nothing to report. My most recent check-up last week was all good. Six more months of 3-monthly checks, then we go down to 6-months.

I‘ve been having less panic attacks about my health now; it‘s no longer the nr 1 conversation piece, my hair looks normal. I refer to that time like „back when I was ill“. In all, I feel at peace with it, though hearing stories about people in remission suddenly falling back still freak me out. But that‘s what the checkups are for.

I had my outgrown bob freshened up today, here‘s what it looks like now:

TLDR: 3 month gynocology check-up (all clear), and an annual check-up at the oncology center, also all clear.

Today I had an abdomen ultrasound. My oncologist said it wasn't strictly necessary but she would do it anyway for my peace of mind. My gyn, who ordered it, is probably just going the extra mile with me (maybe to make up for missing my cancer in the first place). I also had blood drawn for tumor markers and hormone check, again not standard procedure. My last hormone monitor was over a year ago, so I am curious to find out if my cycle has recovered or if I will stay post-menopausal. It sometimes feels like PMS inside my body, but maybe that is also part of menopause? Women's science is so undervalued that no one bloody knows.

Either way, the oncologist told me that my type of tumor has the highest risk of returning - but also the most short-term. Which means that if it hasn't come back by the time I cross the 2 year mark, it'll probably just stay gone. (unlike other types of tumors where a risk can remain for 20 years) This does not make me immune for other types of cancer (obviously) so I still have to go to all the screenings. Just... feels good to know this immediate danger will soon be over? knock on wood and all that.

Hospitals aside, it was also time to finally cut my hair one length. Begone, stupid bangs! I could not be happier with it! FINALLY a haircut that no longer looks like "it'll get better in time". This haircut looks the way I want it to look, period. A before/after under the cut :)

I had a post set up, then lost my connection, and it never posted. Sigh. Classic tumblr. Anyway- my mamography was clear. I also had a nicer doctor than last time, who explained what she was seeing on the screen and did her best to make me feel comfortable, checking in with me during the screening because she said I looked "anxious". She also apologised for the bad experience of last year when I told her about it. Bedside manner A+, take notes, last year's asshat!

So, I'm good. Next regular check-up is in 3 months; next mamography in a year. Trying not to jinx anything, taking it as it comes. The anxiety still comes in waves, but each 'all clear' helps a little.

I got a haircut again, evening out some more of the choppy natural layers. I am not very satisfied with it as the bangs are still shorter than the rest (I wanted a radical cut but the hairdresser persuaded me against it), and he said that in 12 weeks the bangs will have reached my chin and then we should be able to cut everything the same length, like a bob. I hope that will look good.

Happy new year! Stuff‘s been hectic here, so many viruses hit our household the past months that I just haven‘t been able to take the time and update. But I am here, I am alive, no recent scares, and my next checkup is in February. Next mamography too.

I really did not want to get another mamography at the place that treated me so badly last year, but I have called every radiologist in a 50 km range of our town and literally no one can take any new patients. So, back to the asshole doctor it is. They have several, maybe I am lucky and get someone else this time.

I managed to lose what I secretly dubbed my „chemo weight“; though to be fair I gained more in recovery than I did during chemo. But yeah, those extra pounds that brought on the elastic waistbands. Being able to wear my „pre-cancer clothes“ does help; not to forget but to feel a little more me again? Having a wardrobe full of stuff I couldn‘t wear anymore was serving as a reminder of having changed. It feels good getting some of that back, even though I am aware than we are all changing all the time-just usually more gradually?

Speaking of gradually; my hair‘s been doing its thing, looking like a real (if unkempt) haircut now. No curls anymore, I should probably change my blog name again 😅 I kind of need a haircut, but it feels like too much of a social chore to see someone and tell them what I want, if I don‘t even know. I don’t want to talk to them about my bald head and it’s just something I am avoiding right now. Pictures under the cut!

It’s been a while again. I have checkups every 3 months now, and the last one was all clear so there was not much news. The next one is in november.

Mobility in my left arm is ok again, and the sensation on the skin of my right arm is finally returning. The scar tissue occasionally hurts. That’s about it physically.

The reason I haven’t updated is that we had a cancer scare in the family, and although it turned out to be a wrong diagnosis and the person is now on the mend (!), it threw me in a weeklong loop of anxiety and existentialist dread as we all prepared to say an early goodbye.

I am slowly coming down from it now, every day a little better.

I am trying to stop telling people that I haven’t seen since covid “my story”. I no longer look ill. It’s not a secret, but it depresses people and makes them pity me. It’s tiring. At the same time it feels like I need to “excuse” my life; weird haircut, weight gain, anxiety, unfit. I don’t want people to think I “just let myself go”? 🤷‍♀️ I am pulling the C-card too much and I hate it.

Hair update : I had a haircut in August to even out the bangs a little and make it look more like a real haircut, thought that has since grown out a little again. The hairdresser said my chemo curls were on the way out (the new roots no longer come out wavy) and he was right, though the longer bangs are still a bit springy. It’ll be straight again when I grow it out I guess? Some pics under the cut.

A little late with the update again (still summer holiday time). My next check-up isn’t until coming Friday, so medically, no news. 

Hair? Growing into long-ish bangs, and it was giving me flapper vibes, so under the cut... fun pics :) TBC Friday...

I made it; this update is a little late because I was on holiday, but: I made it 12 months. Still in remission. Still here. They say the first 2 years are critical. That means I’ve made it to half of the ‘critical’ scary period. Go me! (an instagram filter meme showing you ‘the year when you will die’ recently landed on ‘2021′ for me - lol - what do we say to death? NOT TODAY. It’s 2022 and I live. Fuck cancer.)

Not much to report, as I had no check-ups since last month. I was busy getting a tan and natural highlights at the beach. I did tan responsibly- with tons of sunblock and a tshirt over my chest because the radiated breast should not be exposed to sun anymore (it has an increased skin cancer risk) so the worries were never far from my mind, but I was also able to enjoy a holiday without health restrictions. I could walk, swim, eat and do whatever I wanted, so I did.

Hair update? Curls still going strong, plus natural sun bleached highlights. Click for pics...

Another month, another scare. Another false alarm...

This month, I developed a red blotch / bruise on my radiated breast. I waited it out, but when it was still there after 4 weeks, I had three doctors look at it: the gynocologist (who told me to go see a specialist), the radiation specialist (who said it was not radiation damage or skin cancer and I should get a lotion for it) and my GP, who said it was most likely just a skin irritation and we should see if it goes away on its own. So waiting it is- I mostly just wanted to make sure it was not cancer. It’S not, so I’m ok.

It feels like every time I have one scare de-scared, the next one is around the corner. I’m so very, very, very tired. 

Last week I heard some news about a woman I knew from kindergarden; younger than me, small kids - who had beat breastcancer a few years ago. It had come back, and she passed away only a few weeks after discovering it had returned. Stories like this shatter me for a couple of days. Aside from my heartbreak for this lovely woman and her family, I can’t help being selfish and thinking: “this is my future”. Everyone around me is celebrating my “win”. I “beat it”. Yeah. I did- but it can also just come back and then that’s it. I don’t really feel like I can talk about it with anyone beside my therapist, because it’s bringing everyone down. They want to celebrate - I want to hide in a hole. Or, you know, go see a doctor about every tiny little freckle, itch and pain.

But what more can I do but go to my check-ups, and wait? As the GP so aptly said: “No one knows these things. You can also get run over by a bus tomorrow”. Thanks, do you think that helps my anxiety much?

In other news: my hair, still doing small curls. It’s long enough to make a tiny ponytail to keep it out of my neck when the weather is warm, so that’s good, eventhough the top and sides are still too short to be tied back so it’s just a wisp of a ponytail from the back of my head. Pictures incoming...

Ten months sounds a lot when it’s written down like that. I still haven’t gone more than 10 days without some medical follow-up appointment since then. You can imagine how much my health insurance likes me. 

Speaking of whom, the other day they tried to send me an insurance claim form, saying that their file said my hospital visit was ‘caused by an accident’ and they wanted to know ‘WHO DID IT’ (so that someone else can pay the bill). I had to fill out what happened, when I was hurt, and who was responsible. I sure hope they track this “Mr Mutated Cell Devide” and that he’s got good coverage.

Jokes aside, I am sick and tired of hospital visits and check-ups. I know this is my life now but damn. Had another cardio check-up this month (all good). Blood levels ok. Next up will be bone density tests and possibly meds to prevent ostheoporosis, as the chemo destroyed the hormones that keep my bones from crumbling. Lovely, I may fall and break a hip now.

Nothing else new, really. We carry on. Hair keeps growing in small waves- check the cut for an update :)

Not much has happened since my last update. I am getting my second booster shot soon as I am still on record as immunocompromised. Chemo has also messed up my hormones and I am now, according to my recent bloodwork, post-menopausal. I can’t go on arteficial hormones because they increase the breast cancer risk (oh ironies) so for now, I am stuck with taking vitamins. They say my cycle may return as my body recovers from chemo, but I am going on 41 and had a hysterectomy, so I am not sure how realistic that is. Time will tell.

I am still seeing a trauma therapist as we delve deeper into the complexity of my issues. Every now and then I rejoice when I go days/weeks without major panic attacks, only to be smashed down again when the next one hits. It‘s slow, frustrating progress. I have more insight in what is happening inside, but it has yet to make me feel better. Time, again, may help - and jfc am I SICK of saying that. Can time please hurry tf up with this?

Anyway… hair update, as usual, under the cut.

I had my second opinion at the hospital yesterday, and before I get into it: they managed to reassure me that it is, in fact, a harmless thing this time. So there’s that.

I had many doubts and guilt about asking more questions, about doubting the judgement of my gynocologist twice. I went back and forth between needing more reassurance, and telling myself off for needing it. In the end of my last post, though, I did admit that it would not get better without being reassured, so we set things in motion and made the appointment.

The chief doctor at the breast cancer center, who did my surgery, did a manual examination and answered some first questions about what she suspected it to be. She also reassured me that they would biopsy it if they felt it was warranted. Then she sent me to the radiologist who did all my past imaging in the hospital - aka the man who saw my ‘harmless lump’ and recognised it for what it was. While the whole team has been good to me, I consider this the man who saved my life; who took me seriously and did a biopsy when my gyn wouldn’t.

So this man, whose judgement I trust, looked at it and then explained in very clear words why he was absolutely certain this was a harmless cyst filled with fluid. He admitted he is not infallible, but that he would bet anything on it. He then let me ask questions. He waited for me to finish crying and ask the same questions again. He drew me a diagram. And he did not send me out of the room until I had confirmed that I really had no more questions. And then, at the door, he said ‘It’s ok for you to cry. I cry a lot too. Crying helps. It shows you are clinging to life.’ 

Guess what I did? Cry some more ;)

Then, as I went back to the surgeon to pick up my things, the assistant asked if I needed to see the doctor again or not. I was already reassured, wasn’t I? Instinctively, I started to say I was ok- then realised, no. I had more questions, and I asked if I could see her again after all. This took A LOT of courage from tiny me, but I somehow did it.

I asked her how I needed to deal with future cysts. She told me that she personally believes the chance of a new tumor forming in the same breast, especially this soon, is very unlikely, but that all dotors around me know of my history and are on high alert, and that she trusts the gynocologist not to take any chances with me. But she also added that I did nothing wrong coming there, that she understood my concerns, and that should I find myself in this spiral again, I can come back and have it looked at again (and again). 

You have no idea how badly I needed to hear that. Eventhough my friends and family all said ‘it’s good to get a second opinion’, I also needed to hear it from the people whose precious time I am actually claiming just for my state of mind. They said it was ok, so now I can tell myself that too.

The cyst. It’s been 4 weeks. We checked up on it. It got bigger. Also it randomly hurts.

…

Scroll back to february 2021, let that sink in, and then imagine my reaction when my gyn said “it’s fine, see you next month.”

Yeah, no. No. I cannot sit by while a thing in my breast grows measurably larger within a short timespan and hurts- just like last time. So, after about 24 hours of crying, I have decided to get a referral back to the hospital. They may call me crazy, or a hypochondriac, but if this little shit does not get biopsied I may never sleep again.

Suddenly this phase no longer feels like “aftermath”. It feels like “intermission”.

WHY did I not have a full masectomy? This feels like I have a timebomb strapped to my chest. Apparently, cysts can appear, disappear, spread, multiply, grow and shrink randomly- and the type of cancer I had likes to play hide and seek, disguised as cysts and lumps.

So is this what my life is going to be now? Running to the hospital every time my boob decides to play-do itself a new buddy?

I am not sure how many times I can go through this. Everything seems pointless now. Why waste time at physio trying to get sensation and movement back into my arms if I may fall back any time? Is cleaning a bathroom or folding laundry the best use of my time or should I be planning my funeral, writing letters to my kids for birthdays to come? Is overreacting and being extremly morbid constructive? Is this even an overreaction?

The cyst. It’s been 4 weeks. We checked up on it. It got bigger. Also it randomly hurts.

…

Scroll back to february 2021, let that sink in, and then imagine my reaction when my gyn said “it’s fine, see you next month.”

Yeah, no. No. I cannot sit by while a thing in my breast grows measurably larger within a short timespan and hurts- just like last time. So, after about 24 hours of crying, I have decided to get a referral back to the hospital. They may call me crazy, or a hypochondriac, but if this little shit does not get biopsied I may never sleep again.

Suddenly this phase no longer feels like “aftermath”. It feels like “intermission”.

WHY did I not have a full masectomy? This feels like I have a timebomb strapped to my chest. Apparently, cysts can appear, disappear, spread, multiply, grow and shrink randomly- and the type of cancer I had likes to play hide and seek, disguised as cysts and lumps.

So is this what my life is going to be now? Running to the hospital every time my boob decides to play-do itself a new buddy?

I am not sure how many times I can go through this. Everything seems pointless now. Why waste time at physio trying to get sensation and movement back into my arms if I may fall back any time? Is cleaning a bathroom or folding laundry the best use of my time or should I be planning my funeral, writing letters to my kids for birthdays to come? Is overreacting and being extremly morbid constructive? Is this even an overreaction?

It’s been a hell of a week, so this update is late. Before I go into it, tldr: I’m ok.

But that’s not how it looked on Monday. To me, anyway…

Last Monday I had my mammography on both sides. Not at the hospital, but at a local radiology center. I had assumed they would not discuss the results with me but send the pictures to my gynocologist (which I would be seeing on Wednesday) as this is usually what a radiology center does. This time, however, a doctor came in to do extra sonography. He said the mammography looked fine, but they wanted to do a routine sonography anyway. The screen was half turned away from me, but then I saw it. A black blob. A blob that (to me) looked just like the tumor blob last year. The radiologist said “oh, that’s fine, it’s just a cyst. It’s harmless.”

…now where did I hear that before? 🤨

I tried to explain about my misdiagnosis and having a “harmless mass” turn out to be a grade 1 killer cancer, and that I had so many questions, but he brushed it off. Just a cyst, move on, get dressed, next.

(imagine just having your breasts with fresh scar tissue flattened to a bruise between two glass plates and are now sitting naked and sore in front of an unsympathetic stranger and your brain is working up to a panic attack)

So that was my Monday. I had an emergency call with my therapist in the evening, and for the next 2 days took sleeping meds to get some sleep at night until my appointment with the gyn.

Now this is the gyn who misdiagnosed me, and thankfully she understood my distress. (and she probably also realised that she was part of the problem I have with believing doctors who use the word „harmless“). She offered to make another sonography and give me a second opinion. She located the cyst next to the scar tissue and explained how she could tell it was filled with wound fluid and was not a solid mass. She also said that almost every breast forms them after surgery, and that they can go away in their own (though it can take a long time). They do not puncture/drain such cysts unless they are huge and cause pain, and mine is tiny.

Okay; now that sounded credible, and I am convinced this gyn is determined not to make the same mistake twice, so if she had ANY doubts about this, she would have given me a referral. And she didn‘t - so that eased my mind. She also offered to make another sonography in 4 weeks, so should it behave in any way suspicious, we‘ll see.

It did take me until today to stop feeling like I was run over by a truck, hence the late update. All the panic and sleep meds were for nothing, but can you really blame me? If last year taught me anything, it was to always check twice. Will not be going to that radiology center again...

As usual, hair pics under the cut…7 months post chemo: