Showing blog posts tagged with: chemo and other treatments

Breast Cancer Awareness Month

by Hilla Duka - View comments

Pinkribbon

October is, as is hard to miss, Breast cancer awareness month. Last year, I saw all the little pink ribbons, lying on display at every possible checkout, but they affected me little. I think I bought one, maybe I wore it for a while: unknowingly pinning it to my breast where the same sickness was already wreaking havoc, but all in all, for me breast cancer awareness month passed quite unnoticed. Little did I know that the very same illness was already ravaging my body. Little did I know, that the next Breast cancer awareness month, it would hold a completely new meaning to me.

 

It’s recently been stated that breast cancer research gets an unproportionally large amount of funding, and a great chunk of that is from private donations. It would seem easy to argue that some of that funding should go to other cancer research projects. I have two points I’d like to make in the case of why funding breast cancer research is so vital.

 

One is that even though the amount of people diagnosed with breast cancer are proportionally smaller compared to the amount of funding breast cancer research gets, this disease is rapidly slipping down in ages. Once a disease affecting postmenopausal women, the amount of young women now taking ill is growing rapidly. This means that the people affected by breast cancer are no longer mainly older women with grown up children about to retire, but new families with small kids, women in the bloom of their career. If we don’t find find a way to cure this, we are facing a new generation with lost mothers, children who’ve spent their childhood watching their mother, who was supposed to be strong for them, in and out of hospitals, always worrying if the cancer will come back, start growing again. This means our workplaces, indeed society is losing out on vital contributors.

 

The other is more altruistic. The reason so much research funding is put into breast cancer research is that it is easy to induce and grow on mice (I know, animal testing is not an amicable subject) and the conclusions drawn will more often than not affect not just breast cancer medications, but other forms of cancers as well. Today, there’s a huge list of new medicines now available for kidney tumors, pancreas, brain cancers and other forms of cancer, that were originally tried out for breast cancer. Simply put, research wise - it’s a good place to start!

 

Lately, there’s been an international outcry for more research to be put into advanced breast cancer treatment, and this will also be something that benefits all patients with metastatic cancers. Once a tumour metastases, it takes on new abilities, and we to this date do not have any real means of fighting them. This means that for anyone that’s diagnosed with advanced cancer, there really isn’t anything that can be done from a curative point of view. We get meds meant to control the spreading, hopefully reduce it, but not cure it. At some point, it will return, unless we find new ways to fight the new abilities taken on by the metastases. Research here is vital, again, not just for breast cancer, but for all types of cancers. 

 

But if I can make just one case, and get through to anyone reading this - please check your breasts. Do it often. Check to see if your nipples are aligned, check their shape and colour, and if you can’t remember from time to time, take a picture. Feel the sides of your breasts for any lumps, all the way up to your armpits and collar bones. Weigh them in your hands to try to feel if there’s a difference, and if there is, go see a doctor immediately. Until there is a cure - early detection is key.

 

Also, take strange symptoms seriously. For me, I went to my normal doctors office countless times, for vague symptoms like fatigue (but hey, I was doing about 60h a week and had three kids, how could I not be tired?), getting a head rush from standing up too quickly (but hey, I knew I had low blood pressure), constantly coming down with a flu or a cold and not getting well in a long time, and being in the worst shape of my life (which I completely blamed myself for as I couldn’t work out as I was always coming down with something). These doctors prescribed me coughing medicines, and sent me on my way. Not one of them took a simple blood test, that would have revealed that I was severely anemic and most likely had cancer. If you feel that something is wrong, demand to get a blood test.

 

Breast cancer affects everyone, and even though this year you’re looking at the pink ribbons thinking it’s nothing to do with you, you never know where you might be next year. It may never affect you - and I sincerely hope so! But you may well find yourself with a mother, sister, colleague or friend who now struggles with cancer. Please donate to research. A pink ribbon, or other products available throughout October are fine, but even though it’s less sexy, please also consider donating straight to the research charities themselves. And please, please, please, check your breasts! If you have no idea how to do this, ask your GP to show you. In this strange society, breast have become something sexual first and foremost, and a biological part secondly. Don’t succumb to this. Do not accept it. Be it checking for tumours, getting help nursing, or anything else, your breast are first and foremost an important part of your body, not something to be embarrassed about and not to be sexualised.

 

Sorry for this very long and at times rambling post. This comes from one who is now battling with metastatic breast cancer, with an average survival of 18 - 36 months, recently drugged up on chemo which is wreaking havoc in body and mind, someone who is doing everything in their power to stay alive and well-ish after having discovered this much too late.


Adventures far away

by Hilla Duka - View comments

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We’ve had a truly wonderful week of sun, swimming, food and drinks, and are now back home again. Before I go into all the loveliness of the week, I want to direct a huge, absolutely massive Thank you! to all the people who contributed to make this week a reality! I really can’t thank you enough - but I hope that you can feel my gratefulness even though my words are inadequate. With all the madness of being on sick leave, insurance companies making trouble and refusing to pay, there really is no way I could have afforded to do this trip if it wasn’t for you. It’s a memory the kids will always have of a week away from this horror that has become their lives (and if they forget, I’ve taken about a gozillion photos to help them remember!). 

 

Jonathan jumping in to the pool

 

The kids swam in the pool non stop. Jacob (almost) learned how to swim - which is a huge step as he’s been quite scared of water before. And since he’s so skinny, we can’t really go to the swimming pool close by - he gets cold after five minutes (and by cold, I mean his lips are blue and he’s shaking non stop). Here, he could practise jumping into the water and getting his head completely under water, eventually brave enough to remove his arm pads and practise floating (not so easy when there isn’t an ounce of fat on you apparently), and eventually trying to swim. He can manage a few metres, and most importantly, he’s no longer terrified to start his obligatory swimming lessons next year. Jonathan, who’s always loved being in water had  an amazing time, jumping in and trying to do tricks in the water as often as possible. Milo’s still wearing his arm pads, but can move around and has finally stopped referring to getting his head dipped as “drowning”.

 

Milo by the pool side

 

When I needed a rest, Ilir took the boys to the sea, where they got to swim in the Atlantic, get splashed by waves and look for sea shells and pretty stones.

 

Jonathan and Jacob by the sea

 

Milo by the sea

Milo got to meet Bamse, though he was somewhat hesitant he finally gathered up his courage and went to say hi. He was fascinated, even though he explained several times that he knew there were people in the costumes, at the same time they were the characters from Bamse as well.

 

Jonathan was most impressed with the idea that someone would wash and change the towels and sheets for us, he thought that was a luxury quite beyond belief. And I realised that of course, they haven’t stayed at a hotel before: whenever we’ve traveled we’ve rented a flat, or stayed with relatives: this was all new to them. And even though they enjoyed the idea of always having food prepared, they all agreed that they preferred Ilirs cooking, saying how spoiled they felt for having someone cook such good food for them. So for tonight they’ve ordered him to make carrot patties for dinner!

 

I decided I might as well go scarf-less, since wether I wore scarf or not seemed to have little impact on the amount of stares, pointing and whispers I got, so I figured I might as well be as comfortable as I could!

me and milo by the pool

The flight, though a good five and a half hours, was a breeze, at least as far as the kids were concerned. And considering how the other kids on the plane behaved I was so proud of my calm, well behaved little ones. I was less happy with other kids on the plane, but I suppose there must be at least one baby screaming his lungs out on all planes… I’m just happy that kid doesn’t belong to me! Usually, I’m not the one with the best behaved children, they run a bit wild, are highly opinionated, and tend to get into arguments with each other constantly. But they do have good flight manners! No loud voices, no kicking the next chair, no wrestling for armspace or reclining your chair, and definitely no, absolutely no crying. Actually, I’d say they’re better than most fellow passengers on any flight!

And as we were heading home, the kids told me how happy they were with their holiday, how much fun they had had, and how pleased they were to be back home, and my heart filled with gratitude that I had been allowed to experience this with them. Again, thank you! Now we're safely home again, and tomorrow it's back to reality as I head in for treatment number six.

 

Booked!

by Hilla Duka - View comments

Holiday

This past week has been so rough, physically and mentally. Physically mainly because of the different tests I’ve had to undergo for my halftime evaluation, and in part because I chose to participate in life. I went to vote, and I deliberately wanted to do it on the election day (even though it meant standing in line for ages). I don’t know how many more times I’ll get to go and vote, so I wanted to do it properly. I went bowling with the kids, and after much persuasion I actually did some bowling myself (the last time was in my teens, I ended up dropping the ball and someone was hit in the head...) My fingers and my hands hurt for the rest of the day and then some, but it was worth it to do something fun with the kids (they all love bowling).

 

Mentally, because I’ve been waiting for my half term results. I got them today, and I’ve been a nervous wreck waiting for them. Imagine if you got the result of all of your university exams in one day, and then multiply it by some factor - it’s not just a university exam at stake here, but my whole life, my whole future.

 

My head was in complete and utter turmoil, but it turned out to be good news. The ultrasound didn’t produce much - as the tumour is lobular it’s spread in a very spidery way, making it very hard to tell if it’s shrinking or not. The mammography results weren’t back yet, but my doctor was more than pleased when she examined the breast - much smaller, almost as small as the healthy one!

 

My blood tests showed that I was producing blood by myself, at least some of what I need, which is a good sign that the metastases in the bone marrow are receding, even if my blood values where lower now and I’ll probably need a blood transfusion on Friday when I have my next round of chemo. And my lymph nodes were almost normal in size! So, all in all, really good news. The best bit was that there was no new metastases, and the fluid in my right lung that had been there before had gone away.


To celebrate, I’ve booked tickets for the holiday that Heidi and all the lovely people who contributed enabled me to go on through the fundraising campaign! A week of sun, bathing, drinks and ice cream with all my boys - the kids are going to love it! And I will too. And it’s just two weeks away! It’s been hard settling on a date - basically I’m in no condition to do anything for the first week after treatment, and then comes four days when I’m extremely sensitive to infection - not a good time to be on a plane. And after that I have about ten good days, before it’s time for another round, so it had to be on October first. Thankfully, I found a great trip on
Fritidsresor. I’ll be home a day before the 6th treatment, and we leave just as soon as I stop being so sensitive to infection after my next round - perfect! It will be just perfect.

 

 

The picture is borrowed from Fritidsresor, of the hotel we'll be staying at


The art of living

by Hilla Duka - View comments

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In June 2014, my life changed forever. I finally got to see a doctor who took all my strange symptoms seriously, examined my breast and my swollen lymph nodes, and who answered me gently, but made it clear that cancer was a real risk. The next day, after I had left some blood samples, a doctor called me and ordered me to go to the emergency to get a blood transfusion. As my doctor’s office and the emergency didn’t have the same data system, my doctor’s office had faxed my papers, and as I signed in to the emergency room, I was given those papers, to give to the doctor I would see. Naturally I checked them, and from the statement and values it was clear to me that I had cancer. The next day, I was told that it had spread to my lymph nodes, and a week later that it was also found in my skeleton and bone marrow, meaning that it was stage four cancer, with no way of ever being cured from it.

 

Since then, so much of what it is that I’m coming to terms with, is a question of learning how to live with death as a part of life. This is not something we’re forced to do in this day and age, and learning how to is alien and stressing and strange. My reality is that the best I can hope for is that my body can manage all ten chemos now, and that the cancer cells can't, and then… Well, yes, then it’s the question of what then. Basically, after that, it’s living with death around the corner. Even if (or when) I manage to get through all ten treatments, and they give me the amazing news that they can find No Evidence of Disease (NED), the rest of my life will be spent worrying about some lump I’m feeling or a pain in the side or whatnot. I’ll go on checkups, and when I get all clear and they tell me they can’t find anything, I’ll celebrate. And then the next day I’ll start worrying about the next checkup, the next lump, until one day they tell me they can find new spreadings. Coming to terms with this kind of future is taxing and difficult and horrific, and is not something I would wish upon anyone.

 

I’ve done my fair share of trying to negotiate with this unarmed weapon pointing at me, hell - I’ve probably done most peoples share of that. I will willingly, gladly, accept this future as long as there is a future and it’s long, but simply accepting it isn’t the same as understanding what it will mean. It’s a bit like when parents tell someone who doesn’t have kids that they’re tired, and that person goes ‘Yeah, I totally understand’. They don’t, because you can’t unless you’ve been there. It’s not that they don’t want to understand, it’s just that unless you’ve stood there with the baby that just won't stop screaming unless you carry it and rock it at exactly the right pace, while you’re legs are aching and you’re ready to fall asleep standing up, indeed walking around, for the fifth night in a row, you really can’t get it. I think it’s the same now. It’s like I’m standing on one side looking into this thing that will hopefully be my future, and trying hard to accept it and understand what it will be like, only I can’t really understand it yet, because I’m not living through it yet. Almost, but not really yet. One leg is there, and the other is still standing in chemo-reality.

 

But as they say, hope is the last thing that leaves you, and as humans we must have something, that is just maybe out of reach but not entirely, to hope for. And as I’m not religious I can’t really hope for salvation or heaven, and I’m not really interested in eternal peace anyway. The only thing I can hope for is more time, more future. So it stands to reason that a lot of the machinations of my brain will therefore investigate what kind of future I can hope for, if all goes well. It turns out, even in the best outcome of this I have to accept death, as part of my new life.

 

Ironically, I’m actually way better at living since I found out I’m dying. I mean, not right now, and in some sense we’re all dying, but you get the idea. I’m so much better at life, when life also involves death. I’m better at embracing my feelings, I’m better at being grateful, I’m more conscious of the sort of thoughts I allow into my head, and whether they’re worthy thoughts or not. I’m better at enjoying the here-and-now moments, and I’m so much more grateful. Before, I had a good job, decent money and great friends and family, and while I did appreciate every bit of it, I think in some ways I felt entitled to it. It was due to me, as a result of who I was, of what I did.

 

Now, as I’ve struggled to understand how wholly unfair life actually is and that there really isn’t anything you can do about it, whether or not I deserve something is completely unimportant, because you don’t actually get the things you deserve. In comes the gratitude. Yes, I may have cancer and it will change everything about my day to day life and my future, and my death, and it’s not fair in any way, but it’s just part of the portion I’ve been served. I’ve also been given incredible kids, a wonderful husband, loving family and friends, great opportunities to do amazing things… The list goes on and on.


I’ve had to give up basically everything that I was, everything that I thought defined me, but in return I’ve gotten something back. It may not be a fair bargain, but I’m so not left empty-handed in this. If the price I’m paying for living is a life with death as a participant, I’m ok with that.


Perfect imperfections

by Hilla Duka - View comments

Hillabald

As crazy as it sounds, I don’t think I’ve ever been happier with myself and my body than now. Now, when it’s being pumped full of toxins, when my head is bald and my skin is freckled to the max, three of my nails have darkened and are threatening to come off completely, and my eyebrows and eyelashes are gone. Now is when I love it the most.

 

I’ve always had a weird relationship to my body. Though sadly, this relationship should perhaps be described as normal. Most of my friends have the same one with their bodies. I’ve hated that I’m so short, wishing desperately for just ten more centimetres, preferably straight to my legs. Or just as desperately wishing for ten less kilos, or better yet twenty. I developed anorexia and bulimia pretty much as soon as I hit my teens, and even though I came out of it by the end of my teens, the mindset remained. I adored skinny girls, and I hated my curves. I would curse my body for being built so sturdy, for the muscles and fat that would never go away. Now, I’m so very grateful for them. Had I been one of those super skinny girls, there’s no way I would have been able to take ten rounds of chemo.

 

I’ll not pretend like I enjoy seeing my own scalp when I look in the mirror, or the strange, lashless eyes that look back at me, but I love my body for working so hard to get through this. And I feel connected to it in a way that’s very new to me. Before, my body was the means to achieve a goal. It was my transportation, not part of the real me. Now, I feel like I’ve taken possession of it in a brand new way.

 

My dad told me of how, when my grandmother learned she had cancer she had raged ‘How could my body betray me like this?’ but I look at it very differently. I feel as though it was the disconnection between my self, my personality or soul or what have you, and my body, that allowed the cancer to creep in. And, if I’m lucky, connecting the two together again will be what will let it heal.

 

I caused this, at least in some sense. Or at the very least, my negligence to my own health and my body meant that I didn’t see the small signs something was terribly wrong. A lack of respect for my body meant I didn’t take it seriously enough. I didn’t check my breasts very regularly. I didn’t know all the things to look for when you do. And, when I noticed there was a difference between my two breasts, I didn’t think it was the breast with the tumour that was the problem - that one was looking perky and nice. No, was I looking at the healthy one, wondering why that one had decided to go dog-eared on me. I didn’t think of myself as a vain person, but if I had looked at my body without vanity, maybe some concern for these changes would have prompted me to look into all this sooner? We’ll never know.

 

Recently, I changed my profile picture on Facebook. It’s a small bloody thing, but it was big to me. I removed the picture of me laughing on our office terrace, my long hair taking up half the picture, and instead uploaded one of myself with no hair. The one that’s over this post in fact. I used my long hair to hide behind. I wanted to hide my apple cheeks and my double chins and my sadly sloping eyes. Being bald lets you hide nothing. But being loved makes you bold, and for me, it has allowed me to show myself and see myself as I really am, these days. Bald head and all.

 

Going through chemo is really, really rough on the body. I’m now on my fourth treatment, and physically, it’s extremely taxing. If you’re not well-read on the effects of chemo, the basic idea is that since we have no way of actually targeting cancer cells, we just pump the whole body full of toxins, that strike at every single part of your body, hoping that it will also hit the cancer cells. Of course it’s a bit more complicated than that, but that’s pretty much the gist of it. It especially hits the fast-growing cells, like hair, skin, blood, mouth and stomach, but long term use (I will be on chemo for about eight months) will affect the heart, kidneys, lung, and nervous system. To some extent it already is, and I can feel that. It’s somewhat ironic that one of the things I was mourning when I found out I had cancer was the fact that I wouldn’t get to be a little old lady, and now that’s exactly what I feel like - an old lady with bad joints, a heart that races at times, knees and hands that won’t function the way they used to… But throughout all of this, I’m so proud of my body, I’m so thankful for how hard it’s working, to cope with the chemo and to fight the cancer in my body.

 

Cancer is not a gift, and no one should make the mistake of thinking I’m happy for what I’m going through, but it has changed me for the better in many ways, and how well I am now connected to my body, how proud I am of it, how much I love my life, even when so much has been taken from it - these are just a few of the positive changes I’ve had in my life in the past three months.

 

Squandering the day

by Hilla Duka - View comments

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There’s no beating around the bush with it - not working is really hard for me. Work has always been such a big part of my life, when I was a stay at home mum it drove me insane, and then I had babies and toddlers all over the house. It drove me so much round the bend, I ended up starting my own company during Milos infancy. Needless to say, it’s been more than a little difficult learning to be on sick leave. And as basically all of my friends work full time and have careers of their own, when we meet up, the question always comes up - Really, what do you do all day??

 

Honestly, not much, but maybe more than one would expect. I say good bye to the kids and Ilir in the morning (he gets them up and dressed and fed since I’m still not a morning person - that much hasn’t changed), and then I clean up the house. I’ve usually cleared it a bit at night, but somehow the morning rituals seem to just completely clutter the house again. I reason that if I can start the day by getting it nice looking around me, I’ll have started on a good note, and it will bode well for the day to come. It’s become a bit of an obsession - I reason that the day I die will not start with me cleaning and making all the beds, so if I do this every day, I’ll ward off the grim reaper, or something to that extent. Plus, since I’m now spending so much time at home, it only makes sense to keep my surroundings nice and tidy. As a result, our home has never looked nicer.

 

I usually make time for unpleasantness during the day, be they planned or out of the blue. As I’ve written several times before, I need to make room for the horrible thoughts less they consume me, so (I know this will shock anyone who knows me), I do some guided meditations, and let all the sadness come out. Better that than the alternative - panic attacks. I can honestly say that I’ve never cried this much in my entire life, and that includes the pregnancies with their hormonal roller coaster rides.

 

I try to learn stuff, I have a long to-do list with stuff that I want to learn how to do for this site, but basically anything I didn't know will do. Today I learned that if you don’t have eyelashes or eyebrows, you really shouldn’t just put soap on your face and leave it there for a bit. It will sort of just slope down into your eyes. Bet you didn’t know that?

 

I read a lot. Like, loads. Biographies mainly, but since my attention span sometimes, depending on where I am in treatment, is that of a goldfish, I often just resort to social media… I know, it’s sad. I’ve taken to putting on music when I’m alone around the house, not really the things I used to listen to, but mainly Chopin. It’s kind of soothing and doesn’t really demand very much from me, and it’s still not boring. I'm basically like this little old lady walking around with stiff joints fluffing pillows and listening to classical music. But with wine. 

 

The thing is, I don’t really have that much energy. So if I manage to go out to meet someone for lunch, or go for a walk or fix some snacks for when the kids get home, for me that’s a good day, a day of accomplishment. Life has become so very small. And as I try to remind myself, my main job right now is to go through treatment and take care of myself as much as I can. Well, I try to remind myself. It's probably a good thing people around me do it too. 


Fair is fair - right?

by Hilla Duka - View comments

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That’s what we teach our kids. Either all you gets ice cream, or none of you get ice cream. If he got to play on the computer then your turn will come. Because fair is fair. And when they lash out at us and through tantrums because something's not fair, we do our best to make it fair. If everyone in your class really does have a cell phone then maybe I should get you one. But life isn’t fair, not even in the slightest. Right now, I’m trying so much not to let my kids see how hard I’m fighting to give them something they’ve never even thought they would not have - me.

 

Fair isn’t fair, we’re all born with different preconditions, different potentials, different challenges. And for some of us, life throws a lot, while for others it seems more of a smooth sailing. But even I - at the age of thirty five, will break down in tears and rage at the world about how unfair it is. And it’s true, it is. Breast cancer is like a game of russian roulette - it strikes out of nowhere, and it doesn’t care that you’re young, that you have kids that need you, that you’re kind of healthy. It’s not fair, but it’s life, and the only thing we can really do is deal with what life throws at us, stop whining that it isn’t fair, and get on with things. Maybe that’s what we should be teaching our kids instead?

 

I try very hard to believe with all that’s in me, that I will be the miracle patient. That I’ll go into remission, and just stay there, for years and years. And that then there will come a way to kill metastases: cancer won’t be incurable anymore, and I’ll go on to become a little old lady. I want that scenario to be true. But I also know that that might not be the case, that indeed it isn’t the likely case at all. And if that’s not going to happen, then I want to have made the best of the time I had. I want to have been the best me I could possibly be. Actually, I want that even if I get to be a little old lady.

 

I want to have left a mark, to have done some good. And so I start with myself, and I tell myself not to mope around that life isn’t fair, but to do something instead. I watch myself for those unworthy thoughts that sometimes creep into my head, and I work at being a better, nicer, kinder person. If this whole trip doesn’t go the way I want it to, I want my kids to remember, if not my voice or what I looked like, then the sound of me laughing, the feeling of me hugging them, how I would always tell them how proud I am of them. I want them to know that I worked at being a better person, and that this is a legacy I would like them to continue in their own lives. I want them to know how sacred a life is, and how I fought to stay with them.

 

Fair is not fair, but no-one knows the future. Maybe I will be that miracle patient. Maybe I won’t. One thing I do know, and that is that this whole experience has changed me, and I think for the better. I believe I’m a nicer person now than before I got the diagnosis, and that’s worth something, to me. Life may not be fair, and maybe we’d do well to teach our children that, rather than shield them from it all. But life will hand you good things and bad, and if we learn to take the punches when they come, maybe we can enjoy the good turns better, when they come? Because they do come.

 

The picture above is taken at Gröna Lund earlier this summer, before we knew anything about cancer, and the challenges facing us. Just a simple, beautiful day with the kids, all of us happy and carefree...