Showing blog posts tagged with: chemo and other treatments

Sum up the year

by Hilla Duka - View comments

Paris

It’s not even Christmas yet, and already I see all these posts on different blogs summing up 2014 - the good, the bad, and the ugly. Though  mostly the good. Either I follow insanely happy, successful and beloved people, or we just tend to try to enhance the good and hide the bad.

 

I ended 2013 with a Facebook post saying “Goodbye 2013. 2014 - you’ve got big shoes to fill”. 2013 truly was a great year for me, in every way. I was suddenly making a career, something I hadn’t really planned on but found myself truly enjoying. I got to travel, meet amazing people, broaden my views. And at home, I finally felt as if everything started working out. For the first time since Jonathan was born, I started sleeping full nights again, and that did wonders for me. I felt the kids had grown past that baby phase, which was always so hard for me to cope with, and had now turned into these three amazing little people - my favourite people in the world. Though home life was still stressful at times, it was in 2013 that I stopped feeling as if I was constantly falling.

 

And then came 2014, which is as I should remember the year I’m trying to sum up now. It’s been a year of extreme opposites. A year of devastating news as well as love and happiness greater than I’ve known ever before. Looking back, to me it seems it all began to fall apart that night in Berlin, where after a work thing late at night on my way back to my hotel, I slipped on a patch of ice and dislocated my knee and tore a ligament. That was the end of January, and that was the end of my health and my strength. It took me a few months to get back on my feet (quite literally, I was hobbling along) only to realise I just never got really well again. And that, of course, was the start of finding out about the cancer.

 

Never in a million years, as I welcomed the new year with bubbles and kisses all round, did I think this year would bring me to that. But I guess that’s the case for all of us - we just don’t see how it could ever happen to us until it does. I’ll not try to put to words the feeling of finding out you’re dying, I just can’t. Most of all, I felt small, and helpless, and terribly, terribly sad for my childrens sake. Then I felt angry, angry at the loss they would face, all the things I would miss out on. And then I decided the doctors were wrong, I would prove them wrong, I would be the miracle. And these are still the feelings I go through, and probably always will. It’s like a silly waltz I do: One, two three, one, two, three, sad, angry, denial, sad, angry denial. Round I go. Hello, new life. Dizzying.


But, as much as I hate having cancer, and believe me I hate it with a vengeance I never knew before, looking back on 2014 also means seeing Ilir and the kids and our wedding, remembering the times I’ve spent with good friends and great wines, all that laughter. Yes, I’ve seen more of the inside of a hospital than I ever would have wanted, I’ve been in pain and I’ve watched my own body be slowly poisoned beyond repair or recognition, but I’ve loved, and I’ve laughed, and I made others laugh too, and I am still here. 2014 will always be the year I found out about the cancer, but more than that, it will be a year I have seen through, and for that I am grateful. And as I sum it up, I weigh it out, and there is just as much love and happiness as there is sadness and sorrow. Perhaps the only thing that matters is that it is a year I am happy to have had?


Good days and bad

by Hilla Duka - View comments

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How can you stay so positive? It’s not just once I’ve had that question, and I hope, if my dreams of becoming a miracle patient go pear shaped, that my kids will remember me as someone who was happy. Because I am. I am and I’m not, you know? It’s a landscape of extremes. I am so incredibly happy for what I have, more so than ever before. It’s in some ways as if the cancer diagnosis put new glasses on my nose, and I can see everything so much clearer, feel so much stronger. I love my life, and the people in it with a new sort of ferocity. I never knew how much I would be willing to sacrifice, just to stay around with them a bit longer. As parents, we often say how we would give an arm and a leg for our kids, now I get to see how true that is.

Milo and Jonathan

And at the same time, trust me, I’m not so bloody happy all the time. I cry, so unbelievably much, it’s insane I haven’t dried up yet. It’s inconceivable to me that I will die, long before my time, and not see my kids grow up, not be there for them. And when the realisation hits me that this is a likely scenario, it smites me down every time, and there I am, floored, crying my eyes out and making sounds that don’t belong in a human mouth. I can live with my present, I can live with looking odd and being in pain, but I can’t live with the idea that I will leave my loved ones. So when that idea takes a grip on me and holds me in it’s claws, I’m not so positive anymore.

 

I’ve lost quite a lot of functionality in my right hand. Chemotherapy induced neuropathy, it’s called, and apparently it’s here to stay - at least for as long as I am. I am, of course, right handed. I can more or less type on a computer, though not write by hand. I can’t draw much, or crochet, and I really shouldn’t hold a cup with that hand. It hurts, or rather aches, quite a lot of the time, and it’s very swollen. Still, I don’t care. Take it - take my arm! I want to shout at the cancer, or the chemo - it’s very hard at this point to know who or what I hate. Take it all, if you will just leave me with some life left in me.

Ilir and Milo
These are the thoughts that go through my head, especially as I recuperate after another round of chemo. When my days are filled with vomit tasting and aches and pains and loneliness and mind tricks. And then I pick myself up, after these long days are over and I finally have some energy again, and I go out and have a coffee with you, and you ask me how I can stay so positive. This is how. There are good days and bad, even if I don’t show them all.


Wigging it

by Hilla Duka - View comments

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I came into this chemo experience with very strong opinions about wearing a wig. Well, there’s a surprise for you, when did I not have strong opinions? Anyway, I felt quite strongly that I shouldn’t have to change to make others more at ease, I felt that wearing a wig was an uncomfortable way of trying to hide your illness, faking it, and I wanted no part in it. I would be bald and comfortable. In some ways I still feel that way, but I’ve also learnt to see the other side of it. Perhaps because comfortable just isn’t on the map anymore.

 

I will sometimes wear a scarf and sometimes go bald, depending on how I feel. If my scalp is really sore and itchy I’ll wear a scarf both to hide it and protect it, while if I have a bit of a stub at the moment and don’t have a headache I’ll go bald. People who’ve previously seen me bald and then see me in a scarf often question it, like “Oh, but I thought you were ok being bald now, why are you wearing a scarf today?” Because it’s not only about how comfortable I am about having no hair.

 

But wearing a scarf means combining it with clothes, choosing one you want for the day, and then choosing a way of tying that you like and that feels comfortable for the day. All of these choices that you never have to make if you have hair. And then the scarf sits uncomfortably and the headache you were trying to avoid by putting it on comes on in full force from the knot of the scarf… There’s just no way to come out on top here.

 

And to be honest - the longer I do this cancer journey, the more I long to be well. I just cannot put into words how I yearn to be well. I would give anything to just not have cancer. And these days, I can understand why one would put on a wig, just to get a chance to escape from being seen as a cancer patient all the time, pretend for a little that life is as it was. As it should be.

 

So, six months into chemo hell, I made an appointment to try out a wig. Today was the big day, and off I went, half dreading the experience half excited and hopeful. And even though it felt weird, the wigs were actually a lot more comfortable than my scarves, which I had never thought. It was strange to see myself with hair again, but comforting, in a way. We didn’t find the exact same shade that my hair used to be, but this one’s fairly close. I didn’t get one today, but I probably will. If you see me suddenly having hair again, feel free to laugh. I do too - I laugh at the absurdity of worrying about what’s on your head when you’re fighting for your life. I laugh at the duality of it all - my life and my thoughts have become some sort of hellenistic saga of opposing concepts, that oftentimes seem to negate each other…

Oh and that arm you see in the picture? That's one of the many side effects I'm having to chemo - It's swollen beyond belief as you can probably tell, aching, and my fingers seem impossible to maneuver with any kind of accuracy... Oh chemo, how I love and hate you!
 
 

Chemo verdict

by Hilla Duka - View comments

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Today came the verdict - six months of chemo, my whole life altered at the very core, and the score? It seems it could be 0 - 0. It could be that I have scored a bit better than the cancer, but after half a year of focusing on the goal and mentally picturing becoming the miracle patient, basically I find out that we don’t even have the instruments to tell if I ever get there.

 

The blood count has continued to go up - which is a good thing and should be seen as proof the cancer cells in the bone marrow are receding. At least that could be the reason, and since no one knows anything, that’s what they tell me to believe. The jury’s out when it comes to the metastases in the skeleton. Apparently, the only way to know if I’m in remission is to see when new cancer cells start growing there. If that doesn’t happen for a few years, then I was in remission for those years. So, no news, really.

 

The only good news is the fact that I have no new metastases. Which I really shouldn’t have since I’m on chemo, but still something to be grateful for when there isn’t much else.

 

I think a lot about my grandmother these days. She was 88 when she was diagnosed with cancer, and assured everyone she was quite done with life, and didn’t mind going. I wonder if in reality she felt inside as I do. I think that she must have had moments when the sadness took over, and she broke down in tears at the thought of leaving her children, her home, her body. How can you ever truly be done with life?

tel aviv by night

I have so many things I still want to do! I don’t because my bleak future restrains me, and I don’t want to leave Ilir with too much of my mess. Most of all, of course, I want to be there with him to watch my boys grow up, to help them and support them as they carve out their place in this world. But other, smaller things too. Like owning a dog again, getting a cottage in the countryside and go there on weekends, going to Israel and go for a late night swim in Tel Aviv. Getting strong again and take great long walks in the forrest.

 

But the cancer doesn’t care about what I want. It didn’t care whether or not my grandmother was ready. It rages through my body just as I rage against it. At the moment we're at a stand still. So cheers, here’s to No Progress. It’s not the miracle I had hoped for, but at least I’m still not dying right now either.

 

Hygge

by Hilla Duka - View comments

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There’s a danish word Hygge: it means something along the lines of cosy and comfortable. My brother told me about this word as he joked that this is what I’ve become obsessed with: making hygge. I think he’s right in a way: Since I took ill, I’ve become much more interested in decorating, and the changes at least when it comes to direction and style are quite clear.

I grew up with a dad who was a newly graduated architect - keen to put his mark on the world and with very strong ideas about what was good design. Things were supposed to be modern and clean, no extra adornments anywhere. The walls had Pablo Picasso prints, and Théo Tobiasse lithographies. Modern, modern, modern. How very strange that I wanted something completely different. And a long time it took me to admit even to myself that I liked the complete opposite - old furniture and pillows with flowers on them. It wasn’t until I got the very real reminder that I didn’t have forever to grow into myself that I decided to not care that I was supposed to like polished steel and modern lines, and thus threw it out. Now, I only put into my house what I really like - and I don’t really give a damn what anyone thinks of my style - because it makes me happy.

 

And in the evenings I light candles and make as much hygge as I possibly can, and I cuddle up with the kids in the sofa and feel my heart lift with gratitude that I got this day as well, this love too.

 

This round of chemo has been so hard emotionally, so taxing. At times I fill with this vast sadness, how much I hate this illness, how fervently I wish I could be well again. When nothing else helps, lighting some candles, cooking something nice and making hygge seems like a good way to at least try harder to enjoy the present.


The reason I write (or don't)

by Hilla Duka - View comments

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It feels like I’ve been quiet for ages, but I guess it’s not much more than a week since I posted anything. I’ve had my hands full, in a manner of speaking. I’ve been battling windmills for a while now, in the unwelcome form of my insurance company. Through work I had a health insurance with Skandia, and after my diagnosis with advanced breast cancer, they decided to dig deep into my old medical journals, to come up with some way of denying my claim. So first they went with an idea that I had asthma, and that because of this they wouldn’t have to pay. Then as I could prove I didn’t have asthma, they went further back, and found a post partum depression, and claimed they wouldn’t have to pay because of this. I was basically just set on fight mode - not for financial reasons, as my lovely work, recognising vultures when they show their faces and not wanting to be any part of that, are financially levelling what Skandia are refusing to pay, but because the more I tried to sort it, thinking it was all just an unfortunate mix up, the more I realised that this is something Skandia have systematically been doing for ages - dragging very sick people's medical records through any alchemical mix they can whip up, to try to make anything, a prescription for cough medicine, seem like a good reason not to pay. So finally I had enough, after hearing the same story from women in my breast cancer group, from my doctors office, I decided to go public with it. Not because I like to take my dirty laundry public, or because I enjoy feeling like a victim, but because it’s not right. It’s not right what Skandia does, but as much as it hurts me that they get away with it, I now need to draw the line and admit that I can’t fight any more - I must focus my energy on positive things, and try my hardest to stay well for longer.

 

Then as the story went public, I had my round no 7 of chemo. I have to be really grateful for two things: It was not as bad as chemo no 6, and the worst is over now. I should probably be grateful for more than that, but as I’ve felt as if I’m pregnant with a Coca Cola baby now for a week, that’s about all I can muster. The hyper sensitivity thing is really freaking me out: I can smell someone’s perfume miles away, I hardly allow Ilir to put any on. I can smell the citrus scent of peeling clementines from across the room, and the smell is so strong my eyes tear up. The little new hairs on my head hurt my scalp as they move. The list is endless, and it’s surprisingly hard mentally to never be comfortable.

 

I guess that’s the other reason it’s been a while since I wrote any kind of update - this whole cancer thing is really starting to wear me down, mentally. Some days, it’s as if I have to go through the realisation all over again, because my mind has just stopped remembering to understand that I have cancer. All of a sudden, the notion that I would be ill seems so ridiculous, I want to laugh at it. And then I remember, I touch my portacat and the cord that goes into my main blood vessel, I feel the tiny hairs on my head, and look down to see my blackened fingernails. I think back on all the countless of procedures and checkups I’ve done, the lymph node biopsies, the bone marrow drilling, the lying in tiny machines that force me to take such coctails of anti anxiety pills that afterwards I can’t even remember I did them. Ok, so cancer kind of makes sense then. But only kind of. Part of me is still waiting to get up and get back to work, to be apart of something more, to laugh with friends over silly things and just not be dying.

 

But perhaps it’s the other way around - perhaps I’ve been feeling worn out because I haven’t been writing. There are so few things left to me now, and around the first week of chemo, I basically only see my own home. The one thing where I am completely free is in what I write, there I can still explore my own mind, and when I feel like it I can be (a bit) witty, and I can focus on whatever I choose. I chose, as I found out about the cancer, to keep writing so that i could preserve something honest from this, something more than social media updates that even at the best of times will not paint a true portrait of your life. Imagine how fake it is during the worst of times… So from the beginning I used this blog to be uncompromisingly honest, to write about what moves in my head as I’m trying to learn how to do something each and every one of us will have to do at one point. I kept writing because it became something I have built by myself, from the technical framework to the texts. I kept writing hoping that it might some day help the kids to read. But I think one of the key reasons I write, that I missed but that matters, more than all the others, is because it helps me. Maybe writing obscure bits of texts on life and parenting and death and chemo has become my second therapist (much cheaper than the first I must admit), and I can no more chose not to write when I feel too sad than I can chose not to eat when I’m starving? What a very twisted thought. Weird, but oddly comforting...

 
This little guy on top, the least magical creature in all of Fairy Land, was originally doodled at the plane back from our holiday. Today, he can  represent me in my utter failings as Don Quixote. 

The here and now

by Hilla Duka - View comments

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I am now past what has been the worst week of the worst treatment so far - finally I can say that it’s over. The treatments, or rather my reaction to them, seem to worsen for each time, and this round I was knocked out for six days straight. Six days of having nothing but the taste of vomit in my mouth, not being able to eat or drink anything with relish, of my head feeling very drugged up, and my body aching, left completely without strength. As day four, and then day five approached, I hoped and thought that they would bring comfort, that I would feel better, more like myself. On both those mornings I woke up, looking for signs that I was past it, only to find it was still as bad. That crushed hope was hard to take, although I hope now to have learned for how long it will be bad, and accept it better next time. Next time… Four treatments left, all-in-all a month of feeling this ill, albeit split up over four different weeks. I try not to dwell on that too much, but look forward to two weeks of not feeling like that anymore, and to try to imagine a time when the treatments are done for this time, to imagine receiving good news at the last checkup, to having some time to be well after chemo is over for this time.

 

The days that I am so weak are hard for me to go through, but I think much harder on those around me. I hate that they suffer, hate seeing them worried about me and not be able to reassure them in any way. Cancer has affected everyone in our family, and their lot seems to me to be worse than my own: I can think of nothing as heartbreaking as watching someone you love go through this and feel so helpless as there is nothing you can do. But then I think of how horrible it would be if I did indeed go through this alone, without anyone to care for me or worry for me, and I am grateful to be surrounded with people who love me, who are prepared to be there to offer what support can be had, even though it hurts them.

 

As I was at my worst, in a rare moment of actually being in control of my head, I realised something that I think is fundamentally important: This is in no way different from anything else in life. Yes, I have cancer and it is a chronic and terminal disease - but so is life. Life hands us good turns and bad, and when we’re on a high, feeling loved and successful we feel as though nothing could touch us. But then life takes a turn, be it cancer, or divorce, or any other punch in the stomach, and we’re down, feeling like failures and miserable to the boot, but we get up, lick our wounds, and come back.

 

These turns are part of everyones lives. There is only one time, and one time alone, that we do not get back on our feet and put ourselves back together again, and no one can know when that time is to come. And we cannot live our lives in fear of that time, or in denial of that time, we can in no way let that one, future time when we don’t get back on our feet rule the life we have. I am thirty five years old, I have thirty five years of experience in putting myself back together and making the best of new situations. This I must rely on. It is exactly the same now, with the cancer. Right now, I’m in a bad situation, one I would not wish upon anyone, but I need to focus on getting through the treatments, and picking myself up, because after there will be good times to be had, times of feeling loved and successful, before the next blow comes. And I will be ready to enjoy the next good roll. I know there will come bad blows again, the cancer will flare up again, and then I will work with my body to help it rid itself of it again.

 

When I found out I had cancer, it was as if I died then and there. I mourned the life I would not have, the loss my children and loved ones would have to go through, even before it happened. This new understanding has brought me back from that place, has made me realise that I can live with cancer. No one can say for how long, and I will not dwell on prognoses: they are statistics, no one has seen me fight this before, and so cannot predict for how long or how well I can do this. I don’t mean that in some megalomaniac, narcissistic way: I by no means think that I am fundamentally different than the scores of other women fighting this illness, I just mean that each person is unique. Our makeup, our DNA makes us all different, in ever so small but important ways.

 

When doctors use the term “terminal cancer”, they mean that medically, but we as patients take their words as law - the diagnosis and the prognosis. Yet if I am in remission, if there - for a period of time - are no cancer cells in my body to be found, then I myself must think of myself as well, and enjoy that time, be it six months or ten years. And I must make as much of that time as I can, that is what I owe to life, and to myself. It is the debt we all have to life, and to ourselves: to enjoy our time as much as possible, to face life full on, grab it by the throat and enjoy it in every single way we can.

 

If the end goal of life is to cheat death, then we are all losing. We live in a time when most of us are not forced to live with death as a part of our lives, and so we ignore it and think that we can go on ignoring it forever. But all of us will one day die, the goal cannot be to survive for then we will all fail, it must instead be to have as much time as possible, as good of a time as possible, and a clean death at the end of it.

 

If I look back on the thirty five years I have lived so far, there are of course things I regret. Lost chances and words spoken harshly mainly. But there are so many things I feel I have done well, and I afford myself to look on those things with pride, to take pleasure in remembering them. I am proud of myself for the chances I did take, I am proud to have loved and been loved, and I am proud of my children. The things I regret I don’t dwell on, but use them like I use the things I am proud of: as guides to what mistakes to avoid in the future. So that when my time comes, I can look back on my life, and feel peace in that I lived it well, that I fought to get as much time as I could, that I fought to make that time as good as it could be.