So, I have breastcancer. That sucks.
I wanted to have a place where people can follow my progress if they feel like it, so here we are. These are my personal accounts of dealing with breast cancer. Cancer is different for everyone, but I wanted to share my experience to not only inform people of what’s going on with me, but also to perhaps help others prepare or deal with their own struggles. Writing about it also helps me process everything and is a way for me to let it all out, so to speak. I hope my accounts will prove useful in some way and I thank you for reading.
Most recent blogs are listed first.
I had a regular check-up for the wound on this day. Nothing special, I will continue with the band-aids and the algae fabric. The Lucrin jab is scheduled for two weeks from now and I am taking the Tamoxifen so I know the estrogen can’t do anything in my body. The hot flushes slowly start to return, mostly in the nights for now. I think they won’t be back in full force until after the Lucrin starts working again. At the moment the hot flushes symbolize the lack of estrogen in me, which I now recognize as a good thing. I hope I can continue to do that but I know it will be hard. I just have to think about the numbers. I want the best odds. I don’t want to have a 33% chance the cancer will come back within 5 years, I rather have it be 17%. And even that seems scarily high to me. So bring on the hot flushes and the sleepless nights, the mood swings and the weight gain, and all the little side effects that I know will add up. It will be worth it.
I have to switch hormone therapy. I will now take Tamoxifen daily. This is the most common anti-hormone therapy pill. On top of that we switch back from three monthly jabs of Lucrin to the monthly ones again and we will keep a close watch on my hormone levels. That means back to the side effects. Back to the hot flushes, back to the mood swings, back to lacking energy. To be honest, if I hadn’t had these few weeks with estrogen I don’t think I would have minded the side effects too much anymore. I got used to most of them. But now I know how it could be, how it was, how it should be. It is making me sad. Luckily I am writing this while I still have some estrogen left, so I can look at the bright side. Lucrin combined with Tamoxifen gives the cancer a return rate of 1 in 6 (16,6%) in 5 years. If it was just the Tamoxifen I would be taking that return rate would be 1 in 3 (33,3%). I don’t even want to know what the return rate is without either of those two. So I remind myself of these numbers when I struggle with it all.
I didn’t connect the dots then, but it is all so obvious now. I had my period on this day. And this is not OK. Having my period means that my ovaries are active, and that means they create estrogen. The current hormone therapy that I have is selected on the basis of me being in menopause. If I am not, then this hormone therapy will actually increase the amount of estrogen in my body. My oncologist asks me to keep them informed, does the period persist? Any pains, any other side effects noticed? The period stops after 3 days, if it even was one. It could be a random bleeding, but that wouldn’t explain the high level of estrogen in my blood.
Upon return I have my wound checked again and a fairly simple plan is formed for treatment. For the next two weeks I will need to change the bandage every two days. Fairly simple. There is a small piece of some fabric made from algae that I cut in the right size and push in the hole and I close it with some silicone band-aid over the top. Two days later I remove it all and put new stuff in. The pain is very mild and I only feel it when making the wrong moves. The surrounding area will stay bruised for a bit longer but it is fading.
About two weeks ago I had a blood test done to check my hormone levels. At this point in the treatment I have had Lucrin since May 2017 and there should be no doubt about me being in menopause. The blood test says differently. I have estrogen in my body that should not be there. The lady schedules an appointment with my oncologist for 2 weeks from now. For now I get to enjoy the lack of hot flashes and the fact that my body is actually losing weight again without me trying hard not to eat too many calories. I notice my waistline becoming more pronounced again, I notice myself having more energy, I notice myself being more upbeat. I also sleep better, deeper, and longer. I did not know I was missing these hormones as much as I was.
After talking to the radiotherapist we were sent to her assistant to get more information on how the radiotherapy would happen. We also got a very long list of side effects. Getting tired and having an ultra irritated/burned and darkened skin seem to be some of the standard ones. There’s also a whole bunch that can happen but might not. Only time will tell. It will be a tough period for sure, but it still feels so good that I have an end date in sight that I feel like it’ll be manageable.
Only one more day to go, I have had dinner with friends before the weekend, spent the weekend itself with family and will have dinner with my sisters/sister in law and Owen tonight. Distractions all around, but I have one more appointment before I can actually have surgery. They will take pictures of my breast and inject it with radio active fluid to find out which of the lymph nods is the sentinel. They draw a nice X with waterproof marker on the spot where they see the sentinel node. All ready to go now.
Today was the last day of the Starladder Invitational in Kiev. I was very tired by the end of it, but so was other talent so I am not sure if that was because of the treatment. I had my sister with me this event for extra help, she made sure I had healthy snacks and made it so I only had to worry about my job and nothing else. That, in combination with Starladder also providing healthy food and excellent care, made it so that this event felt great for me. The hot flashes were obviously still there, and I did mess up one throw to a video because of it, but everything felt under control.
I emailed the hospital this morning, informing them on the status of my toes. There has been no improvements, and it’s even a bit worse compared to last week. In the afternoon I get a phone call from one of the assistants that had a chat with the oncologist regarding my toes. She informs me that we will skip this weeks chemo because of the neuropathy in my toes. She insures me that this is a common thing and skipping a chemo at this stage will not have negative consequences. This means that the total rounds for this chemo treatment is now 11 rather than 12. For me the timing is perfect since I have plans to work again coming week (Starladder Invitational, Kiev).
The chemo yesterday went well, it’s a normality now. On this Wednesday I fly to Stockholm for DreamLeague to work for the coming 5 days. It is a bit of a gamble since I don’t know if I can keep my energy up, but my doctor told me I could do everything I wanted as long as my body cooperates. While in Sweden we stay in apartments that have a nice gym in the same building. I try to go when I can and when I feel good enough, and it helps a ton. On the longest broadcast day I don’t feel like I am more tired than my colleagues. It feels good to work, and feels even better to know that all the exercise of the last two months is paying off.
I have had seven out of the twelve chemos now. My energy is still good, and I am hoping for the feeling in my toes to come back over the weekend. Monday I will receive a call and will relay the status of my toes to my doctor. He will decide if I can continue or not. I didn’t think I would say this, but I hope I can get chemo coming Tuesday.
Getting green light was easy. My blood showed that my kidneys were doing good and I was in good condition to continue. I also took this opportunity to ask my oncologist about my path after the chemos are done. A lot of information is shared but in the end only one thing is clear: nothing is certain. There is a chance that I won’t need radiotherapy and can have the mastectomy and reconstruction at the same time. There is also a chance that I will have the mastectomy and will need a lot of radiotherapy afterwards, making reconstruction at the same time too big of a risk. I find it difficult to have hope for good news. I hoped for good news the day I came in for my diagnosis, and that didn’t do me much good. I know I have no control over what is going to happen, and I have been getting better at accepting that. One thing that I did get (some) control over are the PET and MRI scans that are needed after chemo is done. It felt good planning things post-chemo.
Today is the day before talking to my oncologist again and getting a green light for the next three chemos. I feel good, I am confident that I can work a bit during this treatment and I can see the end of the line of chemos. Three down, nine to go!
I wish I could say that the smoothies helped, but the fact is I don’t know. My blood was not better, the amount of white blood cells was lower than before. I was lucky that it was exactly on the threshold for allowing the chemo to continue. At this point I knew I had the chance to go to Seattle 2 weeks from then. Airports aren’t the most hygienic of places, and neither are esports events. To avoid any risk with my low white bloodcell count I was to have an extra injection the day after chemo to boost my white bloodcell production. This way I would have a healthy immune system by the time I travelled.
TI7 in two weeks time, that was the goal. Get the 4th chemo and get as healthy as possible afterwards. This one definitely took a larger toll on my body than the previous one, maybe because of the extra injection. My brother and mom took turns taking care of me this time. I was more tired than I had been in the past. Walking from bed to couch tired me out a few times, that was weird. At some point I questioned if I was going to be healthy in time. But I kept walking and eating healthy. Eyes on the prize.
And just like the other three times before this I recovered. I got my energy back, and this time was different. Not just because TI7 was just a week or so away, but also because this was the 4th chemo. The last of the first heavy ones. I’m already given some information on the next set, but that doesn’t start until the 16th of August. I’m writing this while in the plane to Seattle, I just had my halftime MRI scan yesterday and the results of that I will hear on the 15th of August.
That means I have two weeks to fully dive into The International. Two weeks to breathe Dota2. Two weeks of bliss.
The lower blood values I had before my third chemo stay on my mind. I don’t want that again, I want to be as healthy as I can be before going into that treatment. So I start drinking smoothies, spinach smoothies to be exact. Lots of iron in there, and combined with banana you don’t taste any spinach at all. I hope it works. The hot flashes are still present, and I continue to drink sage tea and soy milk, in the hopes that it can reduce it. They are now a bit less intense and that is also helping me sleep a bit better. The Saturday before the fourth chemo I go on another hike. This one a bit longer than the first one, 17 kilometer in about 3 hours. I feel like it was easier than the previous one. A couple of days left until the 4th chemo, the last one of the heavy batch, supposedly the biggest hurdle in my chemo treatments. I feel healthy, I feel fit, I feel ready. I hope my body is not deceiving me again.
The days after chemo treatment I would describe myself as an old dog. I take walks, I eat and I sleep. Not much more than that. After the first chemo I was able to go see an afternoon movie 2 days afterwards. Felt like quite the victory for me. After the second one I was able to see a movie 3 days afterwards.
The second chemo session is scheduled on Thursday the 8th of June. My blood is already approved the day before and the fact that I am on heavy antibiotics for an infection will not delay the chemo.
My younger sister will come with me on this day and we will play more Snipper Clips.
This second time the cold cap is a lot less friendly. The first 15 minutes were hell but I refuse to give up. At this point I have already lost a lot of hair but so far it still looks ok, just a bit thinner. A massive headache comes with the cold cap as well and makes this round of chemo a lot more unpleasant than the previous one. Once again Snipper Clips makes the time go fast and we are outside in the afternoon.
This time I know that walking helps and sitting still will make my body more unhappy with the chemo. So we walk. We walk a lot, short break for food and more walking. At this point I don’t want to sit still, I dread going to sleep, so I walk.
The night was as bad as I expected it to be. Feverish dreams, tingling all over, and drifting between awake and asleep, never really being either. I eat and drink whenever I can during the night hoping that it helps, it probably does a bit but I still feel like shit.
The morning comes around and it’s raining. That combined with the fact that I was still dead tired and my sister was still sleeping makes me delay the walk. Probably a bad idea on hindsight.
I don’t really remember the day that well, but it was my worst day yet. The antibiotics might have something to do with that as my body was still processing those as well.
At this point I have to mention what enormous support I have received since making my situation public.
First of all Owen has been a great support, he is there for me when I need it and is able to help me without making me feel like a cancer patient. He has cancelled events to be able to be with me more and makes sure I am always entertained even when I am super tired and all I can do is be a zombie sitting on the couch.
Then there’s my family who have been so amazing through all of this. They make sure I don’t have to go to appointments alone and that I am taken care off after chemo. I know that they would drop anything and help me out if I would need them to.
My friends keep me distracted by chatting to me, hanging out with me or go on walks with me whenever I want.
And the Dota community, never could I have imagined the amount of support coming from all around the globe.
I knew it would be news of course, but I was not expecting it to be as massive as it turned out to be.
Since that Sunday (14th of May) I have received countless messages with people expressing support and sharing their own experiences with cancer.
The reddit admins made it so there is a pink border around flairs when you put my name in the text. And even now (I write this a couple of days before my 3rd chemo) I see the pink lining and it makes me feel so supported. It is such an amazing feeling that a thank you wouldn’t even begin to cover it.
And then the Manila Masters, the first event I had to cancel due to chemo. I was watching the tournament from home with Owen and a guy that does the battle of the rages gives me a shoutout (thanks Puppey Jr) on stage, and a couple of guys have taken it upon themselves to provide pens and paper for people who wish to send me a message. I have not received them yet but I know there are about 400 letters on their way to me.
The first couple of times I streamed after telling people I had cancer my stream was full of random people showing support and helping me in the way of donations and subscriptions and support messages. People that don’t normally watch my stream, people that don’t normally even watch Dota2 at all, all just stopping by to let me know they care.
It has all been so incredibly heart warming. I am eternally grateful for all the support.
I was scared. Not gonna lie.
My brother was coming with me that day.
Up until that point I had of course had several emotional moments, but every time there was something else I could focus my mind on. The wig appointment, the dentist, hairdresser, dinner with friends, all were forms of distraction for me. When those fell away I had nothing to look forward to, and in my mind I was basically a different person. I was changing from healthy me, to cancer patient me.
Every time I spoke to a doctor or looked online about what would happen to me during chemo I was met with vagueness. I could feel ok, but I could also be bedridden for weeks while throwing up every 10 minutes. It could be horror, or it could be minor inconvenience. No one knows, no one could know. Everyone’s body reacts differently.
The moment my brother walked through the door I broke down. When I was able to collect myself we walked to the hospital. A 10 minute walk that I was already very familiar with by that point.
We were early, but at exactly 10 in the morning, the actual time of the appointment, we were taken from the waiting room to a room with 1 hospital bed in it and a few chairs. I was told to be on the bed as the cold cap would be heavy and I would want my head to be supported.
When the cold cap was minus 3 degrees Celsius I got it strapped to my head. This process consisted of heavy tugging and pulling as the cap needs to be on super tight to be able to freeze the first layer of my scalp that holds the roots of my hair. After it was on the temperature was lowered to minus 6.
I was told that in the first 15 minutes of the cold cap a lot of women change their mind and want it off. Too cold, too painful, not worth the discomfort. I think I was lucky that first time, as the discomfort I experienced was not half as bad as I expected it to be after hearing the bad stories.
I got an IV drip in my hand that first gave me a bag of anti nausea and steroid fluid. After that it was chemo time. Bright orange fluid was the first bag of it, I was told that I should press a panic button the moment I felt any kind of burning on my hand. If the chemical would be in my veins it would be fine, but if it touched any other tissue it would burn through it.
That warning made me really realize that it was actually happening, poisoning my body for the greater good. I watched the orange fluid enter my bloodstream. Weird how my body wasn’t aware yet it was being poisoned.
The day itself passed rather quickly. Me and my brother played Snipper Clips on my Nintendo Switch. After a couple of interruptions to our game play when nurses changed the bags of fluid we got told that it’s done. All that we need to do now is 90 minutes of extra cooling with the cold cap before we can go.
Snipper Clips is such a good game to take your mind of things if you are with multiple people. It really did make time fly.
With chemicals coursing through my veins my brother and I left the hospital at around 3 PM. What to do next?
It felt weird, my body was tingling. But I didn’t feel bad, I actually felt quite energetic (the steroids probably helped with that).
We ended up grabbing a late lunch and bought some soup and bread for dinner later. When we got back to my apartment it started to hit a bit. I felt tired, and ended up watching my brother play Horizon Zero Dawn for a while.
That evening I found out that the nausea pills were amazing and that walking really helped. Two lessons that would prove to be invaluable.
My brother left at about 9 pm and I ended up going to bed quite fast after that.
This PET scan was scheduled on Monday the 8th of May. The Tuesday morning after I would instantly have the results and meet my oncologist for the first time.
My dad went with me on that morning. First things first: it hadn’t spread! That was a relief.
We got a ton of information about everything regarding my treatment and the reasoning behind every part of the treatment. We had a lot of questions and got a lot of answers.
After talking to my oncologist we talked to his assistant who gave us even more information and gave me a “keppie”. This is a head cover that I can use at night if I end up bald from chemo. It was all very real now.
We were in the hospital for 4 hours total. Measuring cold cap, having blood taken and getting a ton of medicine that would support me through chemo.
The next day there was another short hospital visit for some final talks, and I got the green light. All set for chemotherapy.
Here are some of the facts of those hospital visits:
With my oncologist I decided to go for two separate chemo treatments. The first consists of 4 sessions, each 3 weeks apart. The second is 12 sessions which will happen weekly. This second treatment should be easier to endure than the first.
I will be trying the coldcap. This is a method that freezes the scalp during the chemo treatment. It gives a chance (33%) to keep my hair. It will make each treatment take 3 hours longer, but I want to try.
The treatment plan I have chosen is well considered. I know why I do what I do. I know why each step is taken and have discussed this with my oncologist. Every question I have gets answered to my satisfaction. I trust in my oncologist and in the treatment plan laid out.
My first chemo session was scheduled on Thursday 18th of May, meaning I had a week time before starting. I was able to work a couple more days of DreamLeague before flying back to the Netherlands to prepare.
Preparations started with a dentist visit (infections in the mouth are very common during chemo, and it is best to start the treatment with clean teeth). Next was a visit to a place that made wigs. I tried out multiple wigs and told the expert what I liked and disliked about them. Our next appointment I would try on more, based on my feedback and on my natural hair.
The day before chemo I got my hair cut short as that would be more practical. On the evening before I had dinner with a couple of my closest friends.
On Wednesday May 3rd I went to the doctor with my mom. Definitely cancer, the doctor said.
He told us the type, showed us the picture. Lots of tears. What is the plan, what is the next step. Can I still work DreamLeague? Can I keep my hair? Has it spread? Is it treatable? Survival chances?
A lot of questions.
At this time I was scheduled to fly to Sweden the next morning to work DreamLeague. Owen booked a ticket for that afternoon to get me to Sweden (and to him) faster as he already flew the day before. I was able to work a couple of days and pretend nothing was wrong.
Of course I instantly informed my employers so they were aware of the situation. They all responded super supportive, something that I am very grateful for.
Here are some of the facts:
Type: Lobular, grade 1. Adenocarcinoma estrogen receptor positive, progesterone receptor positive, HER2-neu negative.
Tumor size: 6x6x2 cm
Treatmentplan: I will have to discuss my exact treatment with my oncologist, but this doctor said I would first have about 6 months of chemo, followed by a mastectomy. Afterwards I will have radiotherapy, followed by a breast reconstruction surgery.
Estimated full recovery time: 1 year
So that was bad news.
Next step was a PET scan to see if it had spread.
First I will take you back to the beginning, to where I first noticed there was something wrong with my breast.
I had noticed that the breast started to angle a little bit more to the side than the other. Figured I was getting old, that it was leaning to the side I always sleep on because of that. About a month and a half after that it got a bit worse and that’s when I noticed something hard in it. Uh oh, not good! In my family there is no history of breastcancer what so ever, so that did not come to mind straight away. So I started googling, figured a doctor visit would be in order (I had a very annoying deep cough for 2 months at that time that I wanted to have checked out anyway as well, two birds with one stone.
I went to the doctor on Friday the 14th of April, he checked out the cough, said it would pass with time (it hasn’t yet fully btw), and he checked out the breast. At this point it was very clear there was something hard in there that was quite big. He couldn’t tell what it was and told me he was going to refer me to a Mammapoliclinic. This clinic would do all basic investigations in a few hours. So into the healthcare mill I go.
I was able to get an appointment on Friday the 21st of April. I started with a mammogram, followed by an echo. I had massive Grey’s Anatomy vibes during the echo. The doctor that started the echo was probably halfway through her twenties and was having issues with the echo. There was a very obvious large hard thing in my breast and she could feel it very clearly, but on the echo is was a lot less clear. It was a strange thing that she had not encountered before, so she called in help from a senior doctor. I would estimate that this doctor was still younger than me. She came and looked at what the other doctor was doing, and decided to take over the echo. She ran into the same problem as the previous doctor, but there was consensus between the two doctors and both their assistants that a biopsy was needed.
They give me a local anesthetic and first dig into a lymph node to take a sample. The digging lasted quite a while as she wanted a particular node that she noticed during the echo. Taking a bit of tissue from the hard bit was next. I was told there would be a very loud “click” sound when the hollow needle cuts. Turns out, this click was louder than anything I could imagine, this giving me a scare that made me jump (not great when there is a needle sticking in you). Unfortunately the anesthetics weren’t done deep enough so after the jump-scare I was in excruciating pain. The tissue taken turned out not suitable for analyzing, but luckily the following two samples taken didn’t hurt as much and were good enough.
After the biopsy we had to wait an hour for a preliminary result of the sample and discussion of the mammogram.
Unfortunately the sample was too bloody to be conclusive at this time, and we would have to schedule a new appointment to get the full results. The mammogram didn’t give any information as there were too many glands messing up the image. The doctor wanted me to come in for an MRI to get a clear picture of what was going on in my breast. By some miraculous luck I was able to get the MRI scheduled that same afternoon, a couple of hours before my flight to the Kiev Major. The results would come in the week after, but I postponed the appointment to the Wednesday after the Kiev Major was complete so I could still work at the event.