So, I have breastcancer. That sucks.

Treatment Progress: 38%
Chemo counter: 12/12

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.

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.

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.

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:

Chemotherapy

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.

Cold cap

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.

Reasons

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.

Preparations

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.

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.

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.

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.

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.

It took a little bit longer to recover after the second chemo, as it was a bit harsher on my body. But I still recovered, started feeling like the old me again. And although I was still losing hair every day, I felt good. Good enough to go on an over 15 kilometer hike the Saturday before my third chemo. On top of that I was able to commentate 12 games of Dota2 by myself for the TI7 Qualifiers. I thought I was back to my old self.
That wasn’t quite the case.
My third chemo was scheduled on the 29th of June. That means that on the 28th I went to the hospital to get my blood checked out and talk to my doctor, or in this case, one of the assistants of my doctor. My blood values were a bit on the low side. Luckily not low enough to need extra medicine and not low enough to cancel the chemo, so that was good. But even though it seemed like this was fairly normal because of the treatments, I felt a sense of failure because of it. My body didn’t do as well as I thought it did. How did I not notice that, why has it let me down? I get that this is somewhat melodramatic, but I felt betrayed.
Before talking about the third chemo I want to talk about an extra treatment I am getting.
Having chemo takes its toll on your body, it affects a lot inside your body. Sometimes it can even cause permanent damage. One of the organs this could happen to are the ovaries. Becoming infertile is very probable when on chemo therapy. However, there is a way to give the ovaries a high chance of remaining intact. A way that I took. For the entire duration of the chemo therapy I am kept in artificial menopause.
The injection that I get every four weeks makes sure that my ovaries are kept dormant, and my hormone levels are near nonexistent. Turns out, estrogen has an important role in the body that it can no longer fulfill in mine. It is the hormone that controls your temperature. And with nothing left to control that, and with my body not having found another way of dealing with that, hot flashes are imminent. During a hot flash your temperature control gets confused, and decides that it is very hot. When your body is hot your veins become widened to increase blood flow, and you sweat. This only lasts for a couple of minutes after which your body decides it needs to cool down, and depending on the temperature around you it will. When you are in a colder place it will first make you too cold, and when you are in a warmer place it will take long to cool down.
I know what you are thinking, it is just a bit of heat, just a different temperature. How bad can it be? Very bad, that’s the answer. One hot flash is fine, but unfortunately for me I had a lot. Later on I would measure how often. One hot flash every 45 mins. Like clockwork. The first one right as I wake up, and every 45 minutes onwards until I go to sleep.
Heatwaves rolling through my body every 45 mins. To call it a discomfort would be an understatement. From the doctor I heard that there is a chance that this will not stop, better yet, there is a chance that I will have this for the coming 6 years due to the (anti) hormone therapy I will receive. Not the news I was hoping for. Most counter medicines out there for hot flashes contain hormones, the very thing that makes my tumor grow.
Google is my friend though, and I search for ways to reduce the flashes. I now regularly drink sage tea and soy milk/ yoghurt. At the moment of writing this (4 days before the fourth chemo) the hot flashes are every 50 minutes to an hour, and most are less intense than what they used to be. I hope that with a bit more time my body will be used to the lack of estrogen and will be able to deal with it properly.
Whether or not the protection of my ovaries is working will remain to be seen. Once the hormone therapy ends they will either remain dormant, or will start being active again. Time will tell.
Third chemo incoming. My older sister comes with me and we watch a movie while I have a frozen scalp and chemicals leaking into into my hand. I have been told that the third one is supposed to be feeling heavier than the two before this. Mentally I am prepared to deal with the worst.
It starts the same as normal, feeling a tingling all over as we walk out of the hospital. Have some food, have a walk. This time I feel tired very early already so I take a nap. Then more food and another walk. I wake up a few times during the night but it was not as bad as the second time. On the day after I walk some more, eat some more, sleep some more. Come afternoon I was wide awake and actually felt like I had some energy. We end up going into town and shop shoes for my sister, and even sit down and eat something. Some more eating and sleeping and walking when home. The days after this chemo end up being the easiest ones yet. Sure I feel bad, and do need a lot of rest and some anti nausea medicine, but that is all part of it. Compared to the second and first chemo this one seemed to be easier to deal with.
The fourth day after chemo is the first day without the steroids that I am given, but I wake up energetic and want to go into town to buy sage. Owen comes with me, we find the sage and head back via tram. At some point while sitting in the tram I feel bad, real bad. Out of the blue with no warning I feel nauseous, dizzy, and downright awful. Luckily we are almost at a stop and get off instantly before it gets worse. Sitting in fresh air helps, and after a bit we walk the rest of the way. Walking is still a miracle worker since I feel fine after a few meters already. It was only a small incident but it reminds me that I still have to be careful.

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.

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.

I had an amazing time at The International. I was able to commentate games during the groupstages and be part of the content team for the main event. My energy was good and the only things different from normal were wearing a wig every day and dealing with the hot flashes. Luckily the US is the land of airconditioning which helped me quite a lot in getting through the hot flashes. Only at the end of The International did I notice my energy running out a bit. Probably a combination of the active two weeks and the knowledge of new chemo rounds waiting for me back home. Thanks to Valve providing me with business class flights I was able to arrive well rested in The Netherlands, which was needed.
It all started again on Tuesday the 15th, a day after landing, when I had an appointment with an oncologist. (My own was on holliday so I spoke to a collegue of him.) I received the results of the MRI scan I had before I left for TI7. I had noticed the difference in my breast over the course of the previous set of chemo, and I was hoping for some amazing before and after pictures of a tumor that had shrunken in size. No such luck unfortunately, as the tumor did not decrease in size but only decreased in density. According to the oncologist this was the right progress to expect with the type of tumor I have, so it was good news. I couldn’t help feeling a bit disappointed by the lack of decrease in size however, probably because I was really looking forward to seeing the difference that I felt myself, on the scan. The disappointment was quickly eclipsed by the good news that I could try some medicine against the hot flashes. It might not work, but knowing there was a chance to reduce them, or even completely remove them made me extremely happy. Hot flashes have made my nights a constant struggle, waking up on average 6 times a night bathing in sweat is not great to say the least. If the medicine works it should work in about 3 weeks time, fingers crossed!
My blood was all good and healthy and I did not have any other significant complaints or issues with side effects so I got the green light to start the next set of chemotherapy. This set will last for 12 weeks with chemo appointments every week.
Here we go again. Chemo time.
I have chosen to no longer wear the cold cap. My hair is thin and some parts of my scalp are near bald as the cold cap did not fully work. To go through the cold cap process 12 more times while it’s not working properly did not seem worth it. On top of that I am fine wearing a wig and wearing it daily during TI7 made me very comfortable with it. This means that the chemo sessions are reduced by at least 2 hours each time! For the new chemo I am given an anti-allergy medicine that gets different reactions from different people. There is a chance I won’t notice it at all, and there is a chance I will pass out during the treatment. For this first treatment I belonged to the latter category, the jetlag helped for that one I think.
New chemo, new side effects. No one can tell you exactly what to expect as seems to be the norm for cancer. Time to wait and see. After the first chemo I was really tired from the medicine and basically slept the whole day save for some food breaks. The next day I felt kinda OK, I even went back to streaming because I felt good enough.
I am writing this bit after having three treatments of this specific chemo. The biggest difference compared to the previous one is no nausea. I seem to be able to function quite well, as long as I don’t get too physically active the first day or so afterwards. I notice that I get fatigued easier on those days. But it seems manageable, even to the point where I think I can work again! My oncologist has told me to be on the lookout for a few side effects such as tingling in fingertips and feet, but sofar I have not really felt that so so far so good. I am even hopeful that I can continue building my stamina throughout my treatments.
The third treatment is done, still going strong. This treatment as well as the previous one I was able to stay somewhat awake during it. I have also taken to retail therapy. I am the proud owner of a fitbit, and since I still have hot flashes I allowed myself to buy a fancy pillow that is supposed to keep my head cool during sleep. I am feeling fairly good all things considered.
On this day I even made a great discovery. I have started growing armpit hair again! I know, TMI and all that. But to me this is a clear sign that says that this treatment is indeed a lot more mild, a lot more friendly to my body than the previous one. I would have never thought that I could get happy over having some short thin blonde hairs growing in my armpits, but here we are.

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!

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.

I mentioned before that I was planning on working a bit again. This coming weekend is to be a bit of a test for that. On this day, the day after chemo, I have a flight planned to attend a wedding the next day in a different EU country. If I can do that, and be fine, then I can work and be fine. Luckily everything was indeed fine and my energy was good. I had a great weekend.
However, this was the weekend that my hair started to fully fall out. A very emotional experience and something that I don’t think anyone can ever prepare for. I knew it might happen, and I knew that I would have to get the remaining hair removed at the wig salon. I didn’t want a mirror and Owen was standing in front of me while the lady that removed my hair kept me talking while she worked. I walked out with my wig on, and didn’t see my own bald head till that evening when I got home.
It was hard seeing myself like that for the first time. I think I hadn’t really looked sick till that moment. But at the same time there was something liberating about it all. It was such a hassle before, not being able to do my hair properly, only washing it once every 3/4 days. And when I did wash it I had to be careful with the brush, and every time I would lose a bit of hair again.
Now all that hassle is gone. My wig fits me better, I can wear hats and scarves, and showering has never been more efficient.
I have now had 5 chemos and this is the first time where I notice that the feeling in one of my toes is gone. It is constantly asleep and goes from tingling to painful. Not good, so I email the oncologist and get told it will be okay, and we will still have the full dose of chemo next time, no change.
I think my stamina has increased over the last couple of chemos. I feel good, my energy levels are great, but I have these numb toes that are very annoying. Today I have another appointment with the oncologist. He tells me that what is happening to my toes (8 toes now, rather than the one) is normal, but not good. He will decrease the dose for the coming chemo’s to 75% but it might not work. Nerve damage is a weird thing, and not a lot is known about it. The toes might be fine, or they might not recover at all. If the decrease does not fix the issue there is a chance that they either have to postpone the chemo, or maybe even skip the rest of the treatment and go straight to surgery.
That is a shock to me. I thought everything was going fine, even had it all scheduled out with the chemos and work planned around it. Skipping chemo sounds good on one hand, but I don’t want to take any chances with my health. No unnecessary risks.
Reducing the dose of this specific chemo is apparently a common thing, but skipping the rest all together happens in about 20% of the cases only (according to my oncologist). I don’t want to be a part of that 20%, but I have no say in this of course.
In the meantime I have still been getting hot flashes every hour. Sure, they are a little bit less intense than what they used to be, but still very annoying. They also still have a negative influence on my sleep. As of today I get to increase the dose of ‘clonidine’ one last time to see if that works. It will take about 2 to 3 weeks before I might notice a difference. Fingers crossed!

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.

When I got the call today I could tell the doctor that my toes have not been getting worse, and I am even thinking they are getting better a bit. They don’t hurt as much as they did last week at least.
The fact that they didn’t get worse was enough for giving the green light to continue the treatment. Tomorrow I will have my 8th chemo of this batch.

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 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).

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.

Time for a chat at the hospital. My blood results are good again, a bit better than last time even which is great. As for my toes, there was no improvement. It changed a bit, getting a bit less in toes that had minimal neuropathy, but it got a bit more intense in the two toes that had the most. This is where it gets tricky, because they don’t know if the damage that is done will go away, and they don’t know how much worse it will get if I would get a new dose of chemo. The assistant advises to stop the treatment because the risk of (more) permanent damage is too high. She goes away to check for a second opinion from an oncologist who confirms that this is the advised path. So that’s it. No more chemo.
I have had 8 out of the 12. It feels weird. Somewhere I want to cry because it feels like a big and nasty chapter is finally over. Somewhere I feel like my toes and my body failed me for not being able to complete it. The happiness is stronger though, and I go to the wing of the hospital where I usually get my treatment to say goodbye to the nurses who were always cheerful and chatty and never made me feel like a patient or a number.
Onward to the next step: surgery. I already had scans scheduled for after the chemo, but now that chemo is done they need to be moved forward. I am able to have a PET scan already the next day, but my MRI is on the 1st of November. The appointment to discuss the scans is a week after that. These scans will be able to tell me if I need radiotherapy or not. Depending on that I will get a mastectomy and reconstruction in one go, or mastectomy first and reconstruction after radiotherapy is completed. A lot of unknowns, but I’m still on the right track so I am very happy with that.
It has now been three weeks since my last chemo, and I have to say that it is not as different as I was imagining it would be. I have come to the realization that aside from the energy difference, the side effect that has the biggest impact on my life are the hot flashes. They are the reason I wake up at night, they are the reason I feel like I’m dying of thirst every hour, they are the reason I get frustrated regularly, they are the reason my brain won’t work properly at times, they are the reason I can’t drink coffee or alcohol in the evening, they are the reason I get reminded about being sick every hour. The medicine I am getting helps a little bit, but doesn’t make them go away. Rather than being there every 45 mins, they are now returning every 70 minutes. I have learned that when I am cold they are a lot shorter, so I don’t dress for the weather and I feel chilly most of the time. The moment I am in a comfortable warmth my body betrays me by making me feel uncomfortable in the heat. Snug and cosy can turn into sweats and discomfort in a matter of seconds.
With regards to the toes there is a little change, I mostly notice one toe in particular that is not improving at all. It feels like I constantly have a stone in my shoe, I cant wear shoes without a lot a toe space because of pain. Part of my leg/feet tries to make up for the fact that my toe does not carry it’s weight, making those parts be painful. I jog to try and keep in shape, but I can’t last as long as I would like to due to my toe. The massages are not yet helping, but perhaps the acupuncture that I am planning to get will.
In the meantime I will keep focusing on the positives. I have more energy and higher stamina. I should not have chemo ever again if all continues to go well. My hair will start growing back in a few weeks, so will my eyelashes and eyebrows. I am looking forward to my first hairdresser appointment, and to the first time I have enough hair to go without wig again. A lot of good things to look forward to.

TO BE CONTINUED